Empowering Ability Podcast: Recent Episodes
Eric Goll
Whether you're getting ready for your loved one to move out of the family home,
OR - just trying to prepare them for independence,
There is one important life skill they need to learn.
And no, it's not about cooking, cleaning, or handling money...
It's about knowing how to ask for help.
I remember when I first started to gain more independence.
Then when I moved out of my parents home for the first time and went to college.
I did not know everything that I needed to know. (Even though I thought I did)
I couldn't cook, clean, or manage my schedule properly.
I learned as I went, and that's how most of us do it.
What got me through was... the ability to ask for help.
Many families may fear that their loved one isn't ready to move out.
But no one ever has every skill they need at first.
Listen to this episode to learn how to support your loved one to learn how to ask for help.
š If these strategies resonate with you, Subscribe for Weekly Goodness here: https://bit.ly/YoutubeEricGoll
About Eric Goll:
Welcome to Empowering Ability! I'm Eric Goll, and my mission is to help you ensure your loved one with an intellectual/developmental disability lives an Awesome Ordinary Life! As a family member and coach, I support families touched by autism/ developmental disabilities. I provide the knowledge and tools to cultivate an awesome, ordinary life for your loved ones, ensuring their care and support now and in the future.
š Download my FREE copy of my āLife Planning 101 Guideā to start your loved one's Life Plan Now: https://www.empoweringability.org/life-planning-guide/
šļø Follow the Empowering Ability Podcast: https://bit.ly/EmpoweringAbilityPodcast
š Visit the Empowering Ability Blog: https://www.empoweringability.org/blog/
š Subscribe to this YouTube channel: https://bit.ly/YoutubeEricGoll
šØāš©āš§ Join the Empowering Ability Family Members Only Facebook Group: https://www.facebook.com/groups/empoweringabilityfamilygroup
There's a cafe a few towns over that hires mostly individuals with developmental disabilities.
You may have seen these types of businesses in your area: a cafe, a thrift store, or a packaging facility.
The family behind the cafe started it to provide employment for their daughter and to create opportunities for other people with disabilities.
A heartwarming story...
BUT once you look past the feel-good story, you can see the challenges with this model of employment for people with a disability.
In this podcast, I teach you how to think critically about employment for your loved one with a disability and set them up for success.
š If these strategies resonate with you, Subscribe for Weekly Goodness here: https://bit.ly/YoutubeEricGoll
About Eric Goll:
Welcome to Empowering Ability! I'm Eric Goll, and my mission is to help you ensure your loved one with an intellectual/developmental disability lives an Awesome Ordinary Life! As a family member and coach, I support families touched by autism/ developmental disabilities. I provide the knowledge and tools to cultivate an awesome, ordinary life for your loved ones, ensuring their care and support now and in the future.
š Download my FREE copy of my āLife Planning 101 Guideā to start your loved one's Life Plan Now: https://www.empoweringability.org/life-planning-guide/
šļø Follow the Empowering Ability Podcast: https://bit.ly/EmpoweringAbilityPodcast
š Visit the Empowering Ability Blog: https://www.empoweringability.org/blog/
š Subscribe to this YouTube channel: https://bit.ly/YoutubeEricGoll
šØāš©āš§ Join the Empowering Ability Family Members Only Facebook Group: https://www.facebook.com/groups/empoweringabilityfamilygroup
Learn how to help your loved one live an awesome, ordinary life! Register for the Life Plan Workshop now: https://www.empoweringability.org/2024lifeplanworkshop/
To get more videos like this, Subscribe to my YouTube channel here: https://bit.ly/YoutubeEricGoll
Once Your loved one is defined as 'Special,' their life trajectory changes drastically.
You might have been told they will never graduate, live independently, or get a job. There are a lot of āthey will neverā thrown your way.
Well, I'm here to tell you that "they CAN!"
Join me in this episode as I share inspiring success stories of parents just like you who have helped their loved ones transition from the "special" category to living an awesome ordinary life.
Plus, don't miss out on our upcoming free Life Plan Workshop, where I'll guide you through creating a personalized plan for your loved one's success. Let's make extraordinary happen together!
Register for the Life Plan Workshop now: https://www.empoweringability.org/2024lifeplanworkshop/
š If these strategies resonate with you, Subscribe for Weekly Goodness here: https://bit.ly/YoutubeEricGoll
About Eric Goll:
Welcome to Empowering Ability! I'm Eric Goll, and my mission is to help you ensure your loved one with an intellectual/developmental disability lives an Awesome Ordinary Life! As a family member and coach, I support families touched by autism/ developmental disabilities. I provide the knowledge and tools to cultivate an awesome, ordinary life for your loved ones, ensuring their care and support now and in the future.
š Download my FREE copy of my āLife Planning 101 Guideā to start your loved one's Life Plan Now: https://www.empoweringability.org/life-planning-guide/
šļø Follow the Empowering Ability Podcast: https://bit.ly/EmpoweringAbilityPodcast
š Visit the Empowering Ability Blog: https://www.empoweringability.org/blog/
š Subscribe to this YouTube channel: https://bit.ly/YoutubeEricGoll
šØāš©āš§ Join the Empowering Ability Family Members Only Facebook Group: https://www.facebook.com/groups/empoweringabilityfamilygroup
Register now to get your spot in the free Life Plan Workshop: https://www.empoweringability.org/2024workshop/
To get more videos like this, Subscribe to my YouTube channel here: https://bit.ly/YoutubeEricGoll
There are times that you get worried about the future of your loved one with a developmental disability... You are not alone.
My sister, Sarah, finished high school without any good opportunities and ended up in my parent's basement for the next 10 years until we finally found a solution.
Our society often isolates people like my sister and your loved one, offering little opportunities and separating them from ordinary life.
But it doesn't have to be that way.
In this episode, I share how we helped my sister create an Awesome Ordinary Life with a Life Plan.
It's never too early or late to start, so watch the video to learn how to get started with your loved one.
š If these strategies resonate with you, Subscribe for Weekly Goodness here: https://bit.ly/YoutubeEricGoll
About Eric Goll:
Welcome to Empowering Ability! I'm Eric Goll, and my mission is to help you ensure your loved one with an intellectual/developmental disability lives an Awesome Ordinary Life! As a family member and coach, I support families touched by autism/ developmental disabilities. I provide the knowledge and tools to cultivate an awesome, ordinary life for your loved ones, ensuring their care and support now and in the future.
š Download my FREE copy of my āLife Planning 101 Guideā to start your loved one's Life Plan Now: https://www.empoweringability.org/life-planning-guide/
šļø Follow the Empowering Ability Podcast: https://bit.ly/EmpoweringAbilityPodcast
š Visit the Empowering Ability Blog: https://www.empoweringability.org/blog/
š Subscribe to this YouTube channel: https://bit.ly/YoutubeEricGoll
šØāš©āš§ Join the Empowering Ability Family Members Only Facebook Group: https://www.facebook.com/groups/empoweringabilityfamilygroup
Learn how to create your loved one's Life Plan. Join the Life Plan Workshop Waitlist now: https://www.empoweringability.org/workshopwaitlist/
The 'Special' plan that others have for your loved one with a developmental disability is not a good one. (i.e. a group home and a day program)
This is why you must work with your loved one to build your life plan.
Person-centered planning is about building a life plan for your loved one that is individualized to them and leads to an awesome, ordinary future full of meaning and opportunities.
Listen to this episode to learn more about Person-centered planning and how to get started on your loved one's plan!
Join me for an insightful journey into person-centered planning in my upcoming Life Plan Workshop. Let's create a future full of hope and possibilities.
Secure your spot on the workshop waitlist now: https://www.empoweringability.org/workshopwaitlist/
š If these strategies resonate with you, Subscribe for Weekly Goodness here: https://bit.ly/YoutubeEricGoll
About Eric Goll:
Welcome to Empowering Ability! I'm Eric Goll, and my mission is to help you ensure your loved one with an intellectual/developmental disability lives an Awesome Ordinary Life! As a family member and coach, I support families touched by autism/ developmental disabilities. I provide the knowledge and tools to cultivate an awesome, ordinary life for your loved ones, ensuring their care and support now and in the future.
š Download my FREE copy of my āLife Planning 101 Guideā to start your loved one's Life Plan Now: https://www.empoweringability.org/life-planning-guide/
šļø Follow the Empowering Ability Podcast: https://bit.ly/EmpoweringAbilityPodcast
š Visit the Empowering Ability Blog: https://www.empoweringability.org/blog/
š Subscribe to this YouTube channel: https://bit.ly/YoutubeEricGoll
šØāš©āš§ Join the Empowering Ability Family Members Only Facebook Group: https://www.facebook.com/groups/empoweringabilityfamilygroup
Download a FREE copy of my āLife Planning 101 Guideā to start your loved one's Life Plan Now: https://www.empoweringability.org/life-planning-guide/
To get more videos like this, Subscribe to my YouTube channel here: https://bit.ly/YoutubeEricGoll
At 16, I faced a pivotal moment when my parents told me that they named me in their wills to care for my older sister.
As a sibling, being told I have this responsibility was daunting.
You might face a similar situation, unsure how to engage a sibling for support.
In this episode, I will show you how to engage neurotypical siblings for support and relieve the unspoken tension from future care conversations.
Don't forget to grab your free copy of the Life Planning 101 Guide to get started. Let's empower your loved ones to live their best lives. Get Guide: https://www.empoweringability.org/life-planning-guide/
š If these strategies resonate with you, Subscribe for Weekly Goodness here: https://bit.ly/YoutubeEricGoll
About Eric Goll:
Welcome to Empowering Ability! I'm Eric Goll, and my mission is to help you ensure your loved one with an intellectual/developmental disability lives an Awesome Ordinary Life! As a family member and coach, I support families touched by autism/ developmental disabilities. I provide the knowledge and tools to cultivate an awesome, ordinary life for your loved ones, ensuring their care and support now and in the future.
š Download my FREE copy of my āLife Planning 101 Guideā to start your loved one's Life Plan Now: https://www.empoweringability.org/life-planning-guide/
šļø Follow the Empowering Ability Podcast: https://bit.ly/EmpoweringAbilityPodcast
š Visit the Empowering Ability Blog: https://www.empoweringability.org/blog/
š Subscribe to this YouTube channel: https://bit.ly/YoutubeEricGoll
šØāš©āš§ Join the Empowering Ability Family Members Only Facebook Group: https://www.facebook.com/groups/empoweringabilityfamilygroup
Download a FREE copy of my āLife Planning 101 Guideā to start your loved one's Life Plan Now: https://www.empoweringability.org/life-planning-guide/
In this story, I share Gabby's journey from loneliness to empowerment. Just like you, Gabby's mom, Jane, wrestled with the worry of who would be there for her child when she couldn't.
That's where support circles stepped in.
Come along as we analyze the power of support circles and how they can change your loved one's life. From building meaningful relationships to fostering independence, the possibilities are endless.
Learn how Gabby's life transformed with just five caring individuals by her side. Experience the happiness, growth, and sense of belonging that reshaped Gabby's world.
Ready to take the first step toward creating a brighter future for your loved one? Click to listen now and discover a path filled with hope!
Don't forget to grab your free copy of the Life Planning 101 Guide to get started. Let's empower your loved ones to live their best lives. Get Guide: https://www.empoweringability.org/life-planning-guide/
About Eric Goll:
Welcome to Empowering Ability! I'm Eric Goll, and my mission is to help you ensure your loved one with an intellectual/developmental disability lives an Awesome Ordinary Life! As a family member and coach, I support families touched by autism/ developmental disabilities. I provide the knowledge and tools to cultivate an awesome, ordinary life for your loved ones, ensuring their care and support now and in the future.
š Download my FREE copy of my āLife Planning 101 Guideā to start your loved one's Life Plan Now: https://www.empoweringability.org/life-planning-guide/
šļø Follow the Empowering Ability Podcast: https://bit.ly/EmpoweringAbilityPodcast
š Visit the Empowering Ability Blog: https://www.empoweringability.org/blog/
š Subscribe to this YouTube channel: https://bit.ly/YoutubeEricGoll
šØāš©āš§ Join the Empowering Ability Family Members Only Facebook Group: https://www.facebook.com/groups/empoweringabilityfamilygroup
Download a FREE copy of my āLife Planning 101 Guideā to start your loved one's Life Plan Now: https://www.empoweringability.org/life-planning-guide/
To get more videos like this, Subscribe to my YouTube channel here: https://bit.ly/YoutubeEricGoll
As a caregiver, you're the backbone of support for your loved one with a disability. But what happens when you're not there?
This fear might haunt many families, and we'll tackle this crucial question in this episode.
Most paid support workers won't be there for your loved one, which has been our family experience.
They usually come and go, leaving little lasting impact.
So, who's the person you should be trusting with your loved one?
It's the neurotypical people in genuine relationships with your loved ones. They stick around because they care. But how do you find them?
Listen to the episode to learn more.
Don't forget to grab your free copy of the Life Planning 101 Guide to get started. Let's empower your loved ones to live their best lives. Get Guide: https://www.empoweringability.org/life-planning-guide/
š If these strategies resonate with you, Subscribe for Weekly Goodness here: https://bit.ly/YoutubeEricGoll
About Eric Goll:
Welcome to Empowering Ability! I'm Eric Goll, and my mission is to help you ensure your loved one with an intellectual/developmental disability lives an Awesome Ordinary Life! As a family member and coach, I support families touched by autism/ developmental disabilities. I provide the knowledge and tools to cultivate an awesome, ordinary life for your loved ones, ensuring their care and support now and in the future.
š Download my FREE copy of my āLife Planning 101 Guideā to start your loved one's Life Plan Now: https://www.empoweringability.org/life-planning-guide/
šļø Follow the Empowering Ability Podcast: https://bit.ly/EmpoweringAbilityPodcast
š Visit the Empowering Ability Blog: https://www.empoweringability.org/blog/
š Subscribe to this YouTube channel: https://bit.ly/YoutubeEricGoll
šØāš©āš§ Join the Empowering Ability Family Members Only Facebook Group: https://www.facebook.com/groups/empoweringabilityfamilygroup
Download a FREE copy of my āLife Planning 101 Guideā to start your loved one's Life Plan Now: https://www.empoweringability.org/life-planning-guide/
Let me share a personal story about my sister, Sarah. Despite initial challenges, she now lives independently. Initially, I thought Sarah was lazy, but I was wrong. She had learned helplessness. So, I shifted from telling her what to do to coaching her through tasks. From making breakfast to doing laundry, Sarah gained confidence. Watch now for strategies to empower your loved one and nurture their independence.
Don't forget to grab your free copy of the Life Planning 101 Guide to get started. Let's empower your loved ones to live their best lives. Get Guide: https://www.empoweringability.org/life-planning-guide/
š If these strategies resonate with you, Subscribe for Weekly Goodness here: https://bit.ly/YoutubeEricGoll
About Eric Goll:
Welcome to Empowering Ability! I'm Eric Goll, and my mission is to help you ensure your loved one with an intellectual/developmental disability lives an Awesome Ordinary Life! As a family member and coach, I support families touched by autism/ developmental disabilities. I provide the knowledge and tools to cultivate an awesome, ordinary life for your loved ones, ensuring their care and support now and in the future.
š Download my FREE copy of my āLife Planning 101 Guideā to start your loved one's Life Plan Now: https://www.empoweringability.org/life-planning-guide/
šļø Follow the Empowering Ability Podcast: https://bit.ly/EmpoweringAbilityPodcast
š Visit the Empowering Ability Blog: https://www.empoweringability.org/blog/
š Subscribe to this YouTube channel: https://bit.ly/YoutubeEricGoll
šØāš©āš§ Join the Empowering Ability Family Members Only Facebook Group: https://www.facebook.com/groups/empoweringabilityfamilygroup
Download a FREE copy of my āLife Planning 101 Guideā to start your loved one's Life Plan Now: https://www.empoweringability.org/life-planning-guide/
To get more videos like this, Subscribe to my YouTube channel here: https://bit.ly/YoutubeEricGoll
Are you looking for ways to get more support for your loved one with a disability?
You're not alone.
In this episode, I'll share a heartfelt story and reveal 4 proven strategies to help you navigate the journey ahead.
Here's what you'll learn:
- The importance of asking for help and how small requests can make a big difference.
- Why do things WITH your loved one, not just FOR them, promotes independence and prevents burnout.
- How technology can enhance your loved one's independence and reduce caregiving responsibilities.
- The significance of researching available paid support and how it can prevent caregiver burnout.
Don't miss out on these empowering approaches! Click the video to watch now and take the first step toward a brighter future for your family.
Ready to make a difference in your loved one's life? Listen to the podcast and discover how we can build a brighter future together.
About Eric Goll:
Welcome to Empowering Ability! I'm Eric Goll, and my mission is to help you make sure your loved one with an intellectual/developmental disability lives an Awesome Ordinary Life! As a family member and coach, I support families touched by autism/ developmental disabilities. I provide the knowledge and tools to cultivate an awesome ordinary life for your loved ones, ensuring their care and support now and in the future.
š Download my FREE ā7 Strategies for More Independenceā guide to boost your loved one's independence: https://www.empoweringability.org/independence-tips/
šļø Follow the Empowering Ability Podcast: https://bit.ly/EmpoweringAbilityPodcast
š Visit the Empowering Ability Blog: https://www.empoweringability.org/blog/
š Subscribe to this YouTube channel: https://bit.ly/YoutubeEricGoll
šØāš©āš§ Join the Empowering Ability Family Members Only Facebook Group: https://www.facebook.com/groups/empoweringabilityfamilygroup
Download a FREE copy of my āLife Planning 101 Guideā to start your loved one's Life Plan Now: https://www.empoweringability.org/life-planning-guide/
To get more videos like this, Subscribe to my YouTube channel here: https://bit.ly/YoutubeEricGoll
Ever wonder what it's really like for our loved ones to live in group homes for adults with disabilities?
Let me tell you, it's a tough reality.
In my latest podcast, "Whatās It Like to Live in Group Homes for Adults With Disabilities," we dive into Chris' story. Chris' journey will open your eyes to the challenges our loved ones face every day. From lack of choice to loss of control, Chris' experience is a wake-up call.
But here's the thing: You wouldn't want this life for yourself, and neither do I for our loved ones. They deserve better.
Ready to make a difference in your loved one's life? Listen to the podcast and discover how we can build a brighter future together.
About Eric Goll:
Welcome to Empowering Ability! I'm Eric Goll, and my mission is to help you make sure your loved one with an intellectual/developmental disability lives an Awesome Ordinary Life! As a family member and coach, I support families touched by autism/ developmental disabilities. I provide the knowledge and tools to cultivate an awesome, ordinary life for your loved ones, ensuring their care and support now and in the future.
š Download my FREE ā7 Strategies for More Independenceā guide to boost your loved one's independence: https://www.empoweringability.org/independence-tips/
šļø Follow the Empowering Ability Podcast: https://bit.ly/EmpoweringAbilityPodcast
š Visit the Empowering Ability Blog: https://www.empoweringability.org/blog/
š Subscribe to this YouTube channel: https://bit.ly/YoutubeEricGoll
šØāš©āš§ Join the Empowering Ability Family Members Only Facebook Group: https://www.facebook.com/groups/empoweringabilityfamilygroup
Worried about what's ahead for your loved one with a developmental disability?
It's totally okay to feel unsure, especially when you are trying to plan for their future.
In this episode, I share Jamie's storyāa powerful reminder of why just having a Special Needs Trust might not be enough.
Jamie's parents did what they thought was best and set up a special needs trust, but when they were gone, Jamie's life got tough. It took her 3 years to find her way again. I don't want that for you or your loved one. That's why I'm talking about three necessary steps you can take alongside a Special Needs Trust. These steps can really make a difference for your loved one's future, even without you.
I also describe what a Special Needs Trust (USA) and Henson Trust (Canada) are, and why they are important to set up for your loved one with a disability.
Come join me in the video as I explain these steps. Let's face the future together with hope and possibility.
š If these strategies resonate with you, Subscribe for Weekly Goodness here: https://bit.ly/YoutubeEricGoll
About Eric Goll:
Welcome to Empowering Ability! I'm Eric Goll, and my mission is to help you ensure your loved one with an intellectual/developmental disability lives an Awesome Ordinary Life! As a family member and coach, I support families touched by autism/ developmental disabilities. I provide the knowledge and tools to cultivate an awesome ordinary life for your loved ones, ensuring their care and support now and in the future.
š Download my FREE copy of my āLife Planning 101 Guideā to start your loved one's Life Plan Now: https://www.empoweringability.org/life-planning-guide/
šļø Follow the Empowering Ability Podcast: https://bit.ly/EmpoweringAbilityPodcast
š Visit the Empowering Ability Blog: https://www.empoweringability.org/blog/
š Subscribe to YouTube channel: https://bit.ly/YoutubeEricGoll
šØāš©āš§ Join the Empowering Ability Family Members Only Facebook Group: https://www.facebook.com/groups/empoweringabilityfamilygroup
Download a FREE copy of my ā7 Strategies for More Independenceā guide to boost your loved one's independence: https://www.empoweringability.org/independence-tips/
To get more videos like this, Subscribe to my YouTube channel here: https://bit.ly/YoutubeEricGoll
As a caregiver, you dream of your loved one leading an independent life, meaning more freedom for your loved one... and for you! In this video, I share insights from families who are making significant progress towards independence with their loved one month after month.
Discover three key strategies for more progress:
1) Persistence with Intention
2) Patience for Your Loved One's Pace
3) Embrace Positivity
Listen to this podcast to learn how to implement these strategies to make 2024 the best year yet for your family.
š If these strategies resonate with you, Subscribe for Weekly Goodness here: https://bit.ly/YoutubeEricGoll
About Eric Goll:
Welcome to Empowering Ability! I'm Eric Goll, and my mission is to help you make sure your loved one with an intellectual/developmental disability lives an Awesome Ordinary Life! As a family member and coach, I support families touched by autism/ developmental disabilities. I provide the knowledge and tools to cultivate an awesome ordinary life for your loved ones, ensuring their care and support now and in the future.
š Download my FREE ā7 Strategies for More Independenceā guide to boost your loved one's independence: https://www.empoweringability.org/independence-tips/
šļø Follow the Empowering Ability Podcast: https://bit.ly/EmpoweringAbilityPodcast
š Visit the Empowering Ability Blog: https://www.empoweringability.org/blog/
š Subscribe to this YouTube channel: https://bit.ly/YoutubeEricGoll
šØāš©āš§ Join the Empowering Ability Family Members Only Facebook Group: https://www.facebook.com/groups/empoweringabilityfamilygroup
Download a FREE copy of my ā7 Strategies for More Independenceā guide to boost your loved one's independence: https://www.empoweringability.org/independence-tips/
To get more videos like this, Subscribe to my YouTube channel here: https://bit.ly/YoutubeEricGoll
Do you want your loved one with Autism or a developmental disability to have better social skills so that they can have more friends and better relationships with family members?
In this podcast, I give you 3 game-changing strategies to improve social skills by enhancing communication and relationships for your loved one with a developmental disability or Autism.
š Key Points:
1) Highlight Your Loved One's Value
2) Practice Conversations
3) Use Social Stories
Implementing these strategies not only enhances how others perceive your loved one but also boosts their confidence. More connections mean increased safety in times when you can't be there. Watch the video to learn how to use these 3 strategies to help your loved one improve social skills and have more connection and relationships in their life.
š If these strategies resonate with you, Subscribe for Weekly Goodness here: https://bit.ly/YoutubeEricGoll
About Eric Goll: Welcome to Empowering Ability! I'm Eric Goll, and my mission is to help you make sure your loved one with an intellectual/developmental disability lives an Awesome Ordinary Life! As a family member and coach, I support families touched by autism/ developmental disabilities. I provide the knowledge and tools to cultivate an awesome ordinary life for your loved ones, ensuring their care and support now and in the future.
š Download my FREE ā7 Strategies for More Independenceā guide to boost your loved one's independence: https://www.empoweringability.org/independence-tips/
šļø Follow the Empowering Ability Podcast: https://bit.ly/EmpoweringAbilityPodcast
š Visit the Empowering Ability Blog: https://www.empoweringability.org/blog/
š Subscribe to this YouTube channel: https://bit.ly/YoutubeEricGoll
šØāš©āš§ Join the Empowering Ability Family Members Only Facebook Group: https://www.facebook.com/groups/empoweringabilityfamilygroup
Looking for more strategies to nurture your loved oneās independence? Download my free ā7 Strategies for More Independenceā guide: https://www.empoweringability.org/independence-tips/
The holidays can be tough when you have a loved one with a disability, but guess what? I've got your back! š¤
In this podcast, I'm sharing 3 incredible ways to make this festive season a bit brighter for both you and your loved one.
āØ Key Points:
Give: Discover how a thoughtful, effort-filled gift can showcase your loved one's capabilities and spread joy.
Contribute: Learn how to help your loved one find a valued role at gatherings, supporting confidence and connections.
Space: Navigate the holidays with ease by understanding and respecting your loved one's comfort level with other people.
š Subscribe for Weekly Goodness! If these strategies resonate with you, hit that subscribe button! š
š Free Gift for You! Looking for more ways to nurture independence? Dive into my '7 Strategies for More Independence' PDF guide. https://www.empoweringability.org/independence-tips/
Let's make this holiday season a little more joyful! I'm Eric Goll, and together, let's take a small step forward toward an awesome, ordinary life. šš
Are you seeking fresh, effective ways to support your loved one with a disability in finding a fulfilling paid job? I've got you covered.āā
In this new podcast episode, Milton Tyree, an Employment Specialist for people with developmental disabilities, teaches us the best practices of customized employment that you can use to support your loved one with a disability to get a job and keep it. There are people with all sorts of disabilities and disability levels that have paid employment, and paid employment is possible for your loved one, too.
There are all sorts of jobs for people with disabilities.
Also, you don't have to accept substandard disability employment support or disability vocational support any longer. Milton's best practices in this episode will help you support your loved one with a disability to land their next job!
With gratitude,
Eric
P.S. Ready to unlock a brighter, more independent future for your loved one with a developmental disability? Click below for your FREE copy of the "7 Strategies for More Independence" guide. Each page is packed with actionable tips to boost their capabilities and confidence.
Download Your FREE Guide Now: https://www.empoweringability.org/independence-tips/
āWhoās going to love and care for my loved one with a disability when I canāt?ā
I get it. Itās a tough question and itās overwhelming to think about.
But, Iām having this heart-to-heart with you because if you continue to ignore this question the result is a disaster for your loved one and family in the future.
Donāt worryāIāve got a way forward for you. Itāll take some effort, but believe me, itās worth it.
Want to know more? Listen to this episode to find out how to really secure your loved oneās future.
with gratitude,
Eric
P.S. Ready to change worry into action? Secure an awesome, ordinary life for your loved oneāstarting now, click below
Register for the Life Plan Workshop [FREE]
I know you want your loved one with a disability to be safe and well cared for in the future...
And... you might be thinking that a group home and/or day program is the answer.
But... I want to share something with you that I heard from a conversation with a government agency director that might just shake your entire belief system.
In a word: It's dangerous.
Curious? Concerned? You should be.
Listen to this short episode, where I uncover the dangers of group homes and day programs for your loved one and give you a better alternative.
With gratitude,
Eric
P.S. Transform worry into action: secure an amazing future for your loved one with a developmental disability:
Register for the Life Plan Workshop [FREE]
Ever catch yourself worrying that youāre loved one isnāt capable of independence?
Trust me, youāre not alone. My mom felt the same way about my sister Sarah.
Mom was so worried that Sarah couldnāt even get out of bed on her own. The truth was something else entirely.
ā¦ the lengths I had to go to prove it? Letās just say itās a story you donāt want to miss!
AND it could very well change how you approach your own caregiving journey.
āLet me tell you the storyā¦ listen to this episode!
with gratitude,
Eric
P.S. Transform worry into action ā Prepare your loved one for independence and a secure future:
Register for the Life Plan Workshop [FREE]
Iāve got a story you wonāt want to missāa true tale of transformation thatāll leave you feeling optimistic about the awesome ordinary possibilities for your loved one with a disability.
Meet Julia, a 25-year-old actress with incredible talent but a life script she couldnāt quite figure out.
Then came the game-changer: Karen (Juliaās mom) discovered my Life Plan Coaching Program. The very program Iāll be telling you more about in the coming weeks.
Curious about how Julia and Karen unlocked their potential, addressed safety concerns, and boosted independence? I bet you are. Especially if youāre grappling with the challenge of preparing your loved one for independence.
Donāt take my word for it, thoughālisten to the podcast to hear directly from Julia and Karen. Trust me, this is the motivation boost youāve been waiting for!
With gratitude,
Eric
Do you want the blueprint that Julia and Karen used to create an Awesome Ordinary Life? Iāll be showing you how to use this same blueprint with your loved one in the upcoming Life Plan Workshop. Tap the link below and register for free.
Register for the Life Plan Workshop [FREE]
Youāre a loving mother committed to your loved oneās growth.
I know itās challenging, but thereās a way to help your loved oneās independence flourish.
This short podcast reveals two stories, from family members like you, who transformed their loved oneās lives using daily routines, consistency, and even failure.
Growing your loved oneās independence is possible, and Iāve got the next steps for you in this podcast!
With gratitude,
Eric
Claim your free guide to help you grow your loved one's independence: Download here
Is your loved one's progress feeling slow?
I want to share a story with you, one that offers a path to independence that you've been looking for.
In this podcast, you'll learn from Lori's journey, a mother who started breaking down bigger tasks for her daughter into small, manageable steps. Lori's patience and pacing paved the way for her daughter's growing confidence and independence.
This story isn't just about Lori's daughter; it's a process you can use with your loved one.
Listen to learn how you can use small steps to help your loved one make more progress.
With gratitude,
Eric
Claim your free guide to help you grow your loved one's independence:
Download here: https://www.empoweringability.org/independence-tips/
Iād like to tell you a story.
Florence, like many moms, always decided for her teenager with a developmental disability, thinking it was for his safety.
But deep down, she realized this made him more reliant on her. So, she made a change. She started letting her son make his own choices.
The result? He became more involved, confident, and capable. Remember, every choice your loved one makes brings them closer to independence.
Listen to the podcast to learn how you can use decision-making to increase your loved oneās independence.
with gratitude,
Eric
Claim your free guide āGrowing Independence in 7 Simple Steps.ā
Download Free Guide
Tired of the constant nagging to try and motivate your loved one with a developmental disability to do more at home?
Imagine a world where your loved one is interested in growing their independence without resistance.
The secret is in identifying the perfect opportunity. Let me guide you through it, drawing inspiration from Karenās story.
In this podcast, Iām going to help you find that right opportunity to engage your loved one.
with gratitude,
Eric
Claim your free guide āGrowing Independence in 7 Simple Steps.ā
Download Guide
Letās face it, stepping into the realm of independence for your loved one with developmental disabilities can seem daunting.
But guess what? With a few clever tools and strategies, you can create a home environment that encourages independence while minimizing risk.
This episode is a treasure trove of valuable insights, taking you on a guided tour through two key areas of your home ā the kitchen and bathroom.
Youāll discover practical ways to reduce potential hazards, enabling your loved one to confidently perform daily tasks.
Remember, each small step towards independence adds up towards a giant leap towards an Awesome Ordinary Life.
With gratitude,
Eric
P.S. Want to discover 10 ways technology can enhance your loved oneās independence?
Download your free Independence Technology Guide here: https://www.empoweringability.org/techtools/
In this podcast, you'll discover the power of two supportive technologies for individuals with developmental disabilities. Iāll show you the potential of GPS tracking and video monitoring, which can create a safety net for your loved one and promote independence.
I also address privacy and consent when using these technologies, while acknowledging the positive impact these tools can have on your loved oneās life.
Youāll learn about user-friendly options like āFind My iPhoneā to more sophisticated devices like AngelSense Tracker. Additionally, I explore real-time support through video doorbells and peephole cameras, offering peace of mind, especially when your loved one is home alone.
As you plan the future for your loved one, embrace technology to increase safety and independence.
With gratitude,
Eric
Are you ready to boost your loved one's independence?!! Click the link below to download your free guide.Download Your Guide: 10 Tech Tools - To Transition Towards Independence
Are you a caregiver for your adult child with a developmental disability? Do you ever feel overwhelmed and scared, wondering who will love and care for your child when youāre no longer able to? I know your fears and struggles, and Iām here to help you discover the power of smartphones in redefining communication, safety, and independence for loved ones with developmental disabilities.
I initially doubted the impact of a smartphone on my sister's life, but it became a gateway to her independence.
In this podcast, I explore how smartphones enhance independence through communication, safety, and organizing life.
Together, we can create a plan for their safety and care in the future.
Are you ready to boost your loved one's independence?!! Click the link below to download your free guide.Download Your Guide: 10 Tech Tools - To Transition Towards Independence
Welcome to this new episode of the Empowering Ability podcast. Today, Iām thrilled to introduce our guest, Darcy Elks. Darcy is an educator, consultant, human services evaluator, and advocate for people who are societally devalued. With over 35 years of experience working with marginalized individuals, Darcy has collaborated with various groups, including persons with disabilities. Darcy wears multiple hats, not only as a mother but also as a professional facilitator and coach specializing in social role valorization (SRV). Her wealth of knowledge makes her an invaluable resource for families seeking guidance in their own inclusion journeys.
In this episode, we dive into Darcyās journey as a parent of three adult children, one of whom has a developmental disability, and her experience navigating the path of inclusion over the last 30 years.
Darcyās personal journey began with her oldest daughter, Mary. From the moment Darcy held Mary in her arms, she and her husband were overwhelmed with love and hope for their daughterās future. They dreamed of Mary having a good education, developing friendships, pursuing her interests, and eventually finding a job and perhaps even getting married. However, it was through the inspiring families they met in Alberta, who were already living fully inclusive lives, that Darcy and her husband found the strength and encouragement to embark on their own inclusive path.
Their journey started with finding the right preschool for Mary. Instead of seeking a special preschool, they turned to their neighbors and discovered a welcoming Montessori school. This marked the beginning of Maryās inclusive education, as she became the first child with a developmental disability to be included in that school. Throughout her schooling years, Darcy and her family faced challenges, such as being told Mary couldnāt attend her neighborhood school because of her Down syndrome. However, they persevered, and Mary not only attended her neighborhood school but also developed strong bonds with her peers.
Darcy shares poignant moments from their journey, such as the encounter with Mrs. Wilson, a fourth-grade teacher who initially expressed resistance to having Mary in her class. Darcyās resilience and determination to advocate for her daughter continued into highschool and led to Maryās classmates standing up for her inclusion, reinforcing the importance of having supportive relationships.
Upon graduating from high school, Mary expressed her desire to attend university, even though opportunities for individuals with developmental disabilities were limited at the time. Darcy and her family worked tirelessly to make this dream a reality. Mary enrolled as a non-matriculated student, focusing on theater and health. She received support from a grad student on campus and engaged in valuable learning experiences while educating others through her presence and participation.
Maryās inclusion extended beyond education to the workforce, as she began working part-time jobs from the age of 15. Today, she works in the theater industry. Mary continues to contribute to her community, embodying the vision of a fully included life.
Throughout the episode, Darcy emphasizes the power of relationships and the role they play in fostering inclusion. She highlights the importance of seeking to understand othersā perspectives and approaching challenging situations with calmness, patience, and firmness.
Join me on this important discussion and letās take that crucial step forward.
The 12-Independence Tips Guide!
If youāre ready to help your loved one grow their independence, I invite you to grab our free guide, ā12-Independence Tips: Insights from Parents, for Parents.ā Just click the link below to get your hands on it.
https://www.empoweringability.org/independence-tips/
Welcome to this new episode of the Empowering Ability Podcast! Today, itās my pleasure to bring to you Cesilee Coulson. Cesilee is the Executive Director of the Washington Initiative for Supported Employment, also known as WISE. With 25 years of experience in competitive integrated employment training and technical assistance, Cesilee is an expert in the field. She holds a masterās degree in sports psychology from the University of Oregon, an Executive Coaching certification from the Hudson Institute, and a somatic coaching certification from The Strozzi Institute.
In this episode, we dive deep into the world of supported employment for individuals with developmental disabilities. Cesilee shares her expertise and insights on how to support individuals in gaining and sustaining paid employment. We discuss the importance of cultivating employer relationships, setting clear expectations, and customizing support services to meet individual needs.
Cesileeās extensive experience in the field, combined with her passion for empowering individuals with disabilities, makes this conversation incredibly informative and inspiring. Whether youāre a family member, a professional, or someone interested in the topic, youāll find valuable insights and practical advice throughout the episode.
So, without further ado, I invite you to jump right into the conversation with Cesilee Coulson.
The 12-Independence Tips Guide!
If youāre ready to help your loved one grow their independence, I invite you to grab our free guide, ā12-Independence Tips: Insights from Parents, for Parents.ā Just click the link below to get your hands on it.
https://www.empoweringability.org/independence-tips/
What are the direct impacts on your loved one with a disability in a special vs ordinary workplace?!
In this podcast, I help you understand the impacts by looking at;
-> the work environment,
-> rate of pay,
-> relationships, and
-> growth opportunities.
The differences are drastic, and I hope that this podcast gives you the tools to be able to make better decisions with your loved one.
The 12-Independence Tips Guide!
If youāre ready to help your loved one grow their independence, I invite you to grab our free guide, ā12-Independence Tips: Insights from Parents, for Parents.ā Just click the link below to get your hands on it.
https://www.empoweringability.org/independence-tips/
Have you ever wondered about the difference between a āspecialā (i.e. only neurodivergent) and an āordinaryā (i.e. mostly neurotypical) workplace?!!
Itās easy to assume that our loved ones with developmental disabilities simply focus on their job and that the environment they work in doesnāt matter. But have we taken a moment to consider the implications of the workplace environment?
We live in a world where people with developmental disabilities are still pushed towards the āspecialā environments, and when it comes to work the legacy of sheltered workshops is still deeply ingrained.
As parents and caregivers, the choices we make between āspecialā and āordinaryā options have a profound impact on the lives of our loved ones, the community we live in, and even the world at large.
In this talk, weāll take a deep dive into the impacts of special vs. ordinary workplaces by looking at the larger world and community perspective. This will set the stage for next weekās video/podcast where weāll explore the individual impacts on your loved one of these āspecialā and āordinaryā workplace environments.
In this podcast, you will gain valuable insights that will empower you and your loved one to make informed decisions for their journey towards an Awesome Ordinary Life! Together, we can navigate the complexities and unlock the possibilities of creating a fulfilling and inclusive future.
Join me on this important discussion and letās take that crucial step forward.
The 12-Independence Tips Guide!
If youāre ready to help your loved one grow their independence, I invite you to grab our free guide, ā12-Independence Tips: Insights from Parents, for Parents.ā Just click the link below to get your hands on it.
https://www.empoweringability.org/independence-tips/
Are you feeling frustrated with the limited options available for your loved one with a developmental disability?
Do you feel like they're just going through the motions at their day program without really growing or experiencing life to the fullest?
If so, I'm here to tell you that there are better options out there.
Why is a day program presented as the only option for adults with developmental disabilities?
The truth is, there are better ordinary options available for your loved one. We're here to help you explore and discover the possibilities that exist to help your loved one live an Awesome Ordinary Life, with more independence, real friendships, and even paid employment. To help you learn more about these options, I've created this podcast to explain why there are better options than a day program and what those options look like.With gratitude,
Eric
P.S. Want to create an Awesome Ordinary Life with your loved one?!
Click the link below to join our free upcoming workshop:
https://www.empoweringability.org/workshop/
Spencer and his mom Elaine joined me in this conversation to share how they went from butting heads with each other to collaboratively creating an Awesome Ordinary Life for Spencer.
For them, it felt like other people were picking up their lives after COVID restrictions eased, and they were stuck in isolation.
Spencer shared that he didn't want to leave his bedroom and was on the edge of depression.
Elaine and I started to work together, and Elaine learned to shift from being the caregiver to the coach. When Elaine started collaborating with Spencer, they took some big steps forward.
One big step forward was starting Spencer's support circle of friends, which is a group of people in intentional, reciprocal and freely given relationships with Spencer.
Spencer's confidence has grown; he's exploring his interests in community, and even landed a paid part-time job!
P.S. Want to create an Awesome Ordinary Life with your loved one?!
Click the link below to join our free upcoming workshop:
https://www.empoweringability.org/workshop/
You might agree with me, or you might disagree with me. But, you must consider the truth of the living environment and experience of the person when we group people with disabilities and force them to live together.
It's also helpful to hear straight from someone with lived experience, so here's what a person shared with me about their experience living in a group home:
"I have a developmental disability and have lived in an extremely toxic group home. People who are placed in group homes don't have the right to pick and choose whom they get to live with, which can create hostility.
I have been yelled at by both staff and roommates, as well as assaulted by roommates. After leaving that group home, I chose to find my place to live with minimal support.
To this day, I have never looked back. I have the freedom to do what I want and eat what and when I want, and if I ever decide I want a roommate I will have the freedom to choose whom I want to live with me."
In this video, I share why group homes create a poor living environment, and how you can create a better living environment and home for your loved one.
P.S. Want to create an Awesome Ordinary Life with your loved one?!
Click the link below to join our free upcoming workshop:
https://www.empoweringability.org/workshop/
Alina, the mother of 17-year-old Juliana, joined me to talk about their experience of going from complete dependence on Mom to Juliana growing her capability and independence.
Alina was doing EVERYTHING for Juliana. The idea of independence was there, but Alina was locked into the habit of doing everything.
When Alina thought about Juliana's independence, her fears kicked in, creating a state of overwhelm and keeping them stuck. This resulted in Juliana learning that she couldn't do things.
Then things started to change when Alina and I began to work together. Alina's awareness and mental outlook shifted, which was the key to unlocking Juliana's independence.
Alina no longer feels like the caretaker and has to solve all the problems. Juliana and Alina are now on an equal footing, having more open dialogue, and Juliana is starting to lead her own life!
P.S. Want to create an Awesome Ordinary Life with your loved one?!
Click the link below to join our free upcoming workshop:
https://www.empoweringability.org/workshop/
Do you pay people to act like your friend?
I didn't think so.
So why is it acceptable for paid supporters to act like our loved one's friend when they are NOT in a friendship?!
The behaviour of a paid supporter acting like a friend causes harm to your loved one.
In this video, I share why it is harmful, what you can do to stop the harm, and how you can redirect that paid supporter to be a bridge to real friendships.
With gratitude,
Eric
P.S. Want to create an Awesome Ordinary Life with your loved one?!
Click the link below to join our free upcoming workshop:
https://www.empoweringability.org/workshop/
To help you see more ordinary life possibilities for your loved ones with developmental disabilities, I will share stories of families working with their loved ones to take steps forward to create an Awesome Ordinary Life.
Chloe was in a high school transition program for students with disabilities in her final years of high school.
She became increasingly frustrated by the lack of opportunity the transition program provided and felt like it was holding her back.
Chloe, supported by her mom, Laura, decided to leave the support of the transition program and pursue paid employment.
Today, Chloe is gainfully employed, building meaningful relationships with peers at work, and enjoying her interests in ordinary places in the community.
Want to create an Awesome Ordinary Life with your loved one?!
Click the link below to join our free upcoming workshop that Laura took to start building an Awesome Ordinary Life with Chloe!
https://www.empoweringability.org/workshop/
Iāve been talking about life planning and creating a life plan these last few weeksā¦ And Iāve receivedĀ many questions from families on this topic.
The most common question isā¦Ā āHow do I create a life plan with myĀ loved one?ā
To help you get started, I created this episode for you.
very best,
Eric
P.S. The upcoming 'Life Plan Workshop' will help you start building an "Awesome Ordinary" life plan with your loved one.Get your free seat by tapping the link below if you haven't registered yet!Register for your (free) 'Life Plan Workshop' seat
There are two (2) very different paths for your loved one who has a developmental disability...Which path is your loved one on?!...The "Special Needs" path -OR- the "Awesome Ordinary" path.Each path provides a very different life experience.Listen to this short podcast episode to help you discover what path your loved one is currently on and how it impacts their life.
very best,EricP.S. The upcoming 'Life Plan Workshop' will help you take steps down the "Awesome Ordinary" path.If you haven't registered yet, get your free seat below!Register for your (free) 'Life Plan Workshop' seat
If you don't have a plan, you're planning to fail. - Benjamin Franklin
We need to plan for who will care for our loved one with a developmental disability for when the time comes that we can't. I know this is your #1 fear, and it can be hard to talk about...
But, if you don't have a plan in place, your loved one is at greater risk of falling into the 'system' and experiencing harm. This is the truth.
You want your loved one to have the best life possible, so I've got a short video and article to teach you more about life planning and how you can get started.
very best,
Eric
P.S. If you haven't registered yet, I invite you to join us in the Life Plan Workshop on February 22nd to get started!
Register for the Life Plan Workshop: https://www.empoweringability.org/workshop/
Do you find yourself continually prompting your loved one to take care of their responsibilities around the house?!
It gets exhausting.
Iāve got a different approach for you to try this weekā¦
To start, take a moment to mindfully slow down and breathe and listen to the different ways that your family member is communicatingā¦
Check out this episode to learn more!
very best,
Eric
How do you keep your loved one with a developmental disability safe while enabling them to develop their independence?
There is tension between safety and independence that we experience as families.
If you want to learn how you can stop overprotecting your loved one and limiting their life experiences I share more in this podcast.
Very best,
Eric
P.S. If you want to get your FREE copy of the Ultimate Guide to Independence go here: https://www.empoweringability.org/independence
Happy 2022!
This year, I want to help you to live into the "Awesome Ordinary" life goals that you've got in your mind for your loved one and family.
Over the holidays, I read Will Smith's book titled "Will." So it was entertaining, yet profoundly deep and inspirational; I highly recommend it. In the book, Will Smith shares a great story about a Buddhist parable that teaches us that what got us to where we are today isn't going to get us to where we want to go.
I've got a short video/ article that shares the parable and how we can use this wisdom to help you achieve your goals in 2022.
very best,
Eric
P.S. If you want to get your FREE copy of the Ultimate Guide to Independence go here: https://www.empoweringability.org/independence
Charlotte wanted to support her son, Jamie, to move out into his own home but wasnāt sure how. I had the pleasure of working with Charlotte and Jamie to build an āAwesome Ordinaryā life vision in my coaching programs. And recently, Jamie moved into his own home! I had the opportunity to catch up with Charlotte to learn about Jamieās progress and how they did it!
CLICK HERE to join the waitlist for the Life Plan Coaching Program.
Iād love it if you left a kind comment below!
Are you tired of prompting or telling your loved one to do things, maybe do things around the house?āThis is something that many families that I work with keep bumping into, and it becomes exhausting for you and frustrating for your loved one.āIn this video/article, I give you my #1 strategy to motivate your loved one! This means less prompting from you, and more choice and control for your loved one.
very best,
Eric Goll
P.S. If you want to get your FREE copy of the Ultimate Guide to Independence go here: https://www.empoweringability.org/independence
What do we mean by wanting our loved one with a developmental disability to have more independence?
And, why is helping your loved one grow their independence so important?
In this week's podcast, I tackle these questions and share the story of Sarah's journey to independence. Click the link below for the video and writtenĀ transcription.
https://www.empoweringability.org/why-independence/
Sometimes we fail, we fall down... and we get back up, dust ourselves off, and try again. Falling down is a significant way to learn and find meaning in our lives. So why don't you let your loved one with a developmental disability fall down? FEAR! Your loved one might have vulnerabilities, and you do your best to protect them from harm's way. BUT, the protection you provide might be leading to more harm than the natural consequences that you're saving your loved one from experiencing. In this video, you'll learn the value of allowing your loved one with a disability to fall down and experience the natural consequences.
I'm honored to bring you this conversation I recorded with Joe Clayton. Joe is a survivor of Rideau Regional Center; an institution closed in Smith Falls, Ontario.
"We as the people, disabilities, we cry just like everybody else. We laugh like everybody else. We are human beings, just like everybody else. And like I said before, we just want the world to know we are not monsters who got out of institutions. We are human beings, and we need to be respected and to be loved. And we don't need to be treated like babies. We need to be treated like a human being and we... Yeah, that's it." - Joe Clayton
While being institutionalized as a child, Joe experienced several traumas and injustices and traumatic experiences which he shares with us in this podcast episode. Joe also shares his life after being institutionalized, and through his faith, he found forgiveness and the courage to live life. Joe is an indigenous man and a creative who expresses his creativity through photography and art. Joe now lives with his partner, Christina. Before you listen to this conversation with Joe, I want to warn you that Joe describes many of the horrific acts performed and forced on him. The description of these acts might be triggering for some listeners. Note: There is a full transcription of this podcast at the bottom of this post.
This conversation with Joe was recorded on April 16, 2020, and the time of this publication is September 1, 2020. A lot has changed in our world since I recorded this conversation with Joe Clayton. COVID-19 and its global impacts have been a significant stressor on our families, including mine. As well, there's been an awakening to the social justice issues in our world for black people, indigenous people, and people of color. So at the beginning of this episode, I share my stance and Empowering Ability's stance on antiracism, and what I'm doing to be an active antiracist. CLICK HERE for to read Empowering Ability's Antiracism commitment on our homepage.
Check out Joe Claytons Art and Photography on Facebook
Contact Joe Clayton: williamjc53@gmail.com
Below are some examples of Joe Clayton's Artwork and Photography
Podcast transcription below was completed by Otter.ai. Please note that this transcription was completed word by word in the conversation and hasn't been corrected for written grammar.
Eric Goll 00:22
Hi, I'm Eric Goll and today I'm honored to bring you a conversation I recorded with Joe Clayton and Joe is a survivor of Rideau Regional Center, an institution that closed located in Smith Falls, Ontario. And this conversation with Joe was recorded on April 16 2020. Today being September 1 2020, at the time of this publication, and a lot has changed in our world since I publish or since I recorded rather this conversation with Joe Clayton. COVID-19 and its global impacts have been a major stressor stressor on our families, including mine. as well. There's been an awakening to the social justice issues in our world for black people, indigenous people and people of color. So before I share this conversation with Joe Clayton with you, I'm going to share my stance and Empowering Ability's stance on antiracism, and what I'm doing to be antiracis. We are committed to the work of anti racism. We are learning about anti-black racism, anti-indigenous racism, and how white privilege and superiority impact the people and communities we serve and that I serve. I am aware of the intersection of disability, LGBT LGBTQ plus and how that increases the societal devaluation of bipoc. We must continue to have uncomfortable conversations to dismantle systematic racial barriers that have blocked social and economic progress for black and indigenous peoples for generations as well as people with disabilities. We know that the first step towards change is to speak up. And we want to be very clear, Black Lives Matter to Empowering Ability, and we commit to no longer being silent or neutral as we move towards tangible action and change. So for me as the founder of Empowering Ability, I've completed a six week antiracism training course and I commit to ongoing learning on anti racism. As a sis gender white man, I'm doing the work to recognize my biases, you know, such as, I just want to share a few of these realizations that I've had with you around You know, my privilege and as a white cisgendered man. I'm not worried or I don't have the fear of being shot or killed when being pulled over in my car, by the police, or even, you know, being harassed for that matter. I can see my race and gender widely represented in roles and in spaces that I aspire to be in or I aspire to. I'm confident that I can reach out to organizations and to leaders and have them open my emails, or even share my content. I can be confident that families will be open to working with me because I feel familiar or I feel safe to them. I can speak to you without my race being put on trial. I can step away from the conversations of race if I wish to. So these are some examples that I've realized of my white privilege. And now, you know, I'm very aware of these things. Whereas six months ago, I wasn't. So, you know, part of this learning was through completed through a six week anti racism course, and I'm continuing my learning and my journey to be an anti racist. And I'm listening, and I'm listening to diverse voices. And I encourage all of us to be doing this work of anti racism. So thank you for listening to me on this important issue. And today I'm bringing you this conversation with Joe Clayton. Joe is a survivor of the region rideau regional center an institution in Smith Falls, Ontario. That has closed and Joe experienced several traumas and injustices at a very young age, while being institutionalized, and Joe shares with us his experiences, and he also shares, you know his life after being institutionalized, and through his faith, faith, how he found forgiveness, and the courage to live life. Joe is an indigenous man, he is a creative. And he expresses that through photography and art, and he lives with his partner, Christina. So, before we roll this conversation with Joe, I just want to warn you that Joe describes many of the horrific acts performed and forced on him. And the description of these acts might be triggering for some listeners. So here is my conversation with Joe Clayton. Joe, welcome to the Empowering Ability podcast. So happy to have you on today.
Joe Clayton 06:04 Oh, thank you.
Eric Goll 06:05
Yeah, right on. Well, it's a pleasure to have you and Joe Clayton as a self advocate and a survivor of an institution, the Rideau regional center. I am honored to have you come on the podcast today and share your story and to share your experience with us. So I'm going to hand it over to you here, Joe. And, and we would be honored to hear your story.
Joe Clayton 06:39 I want to say thank you to everybody who's listening to my story. And anyways, here we go. I was born in Pembroke, Ontario on February 9. I was eight pounds nine ounces. I was with my mom for five years. My mom was sick and she could not care for me. So my mum's friend looked up to me after me until she died. On August 18 1958, at the age of five I went to the Childrens Aid Society. I remember that day as if it were yesterday. My mom say goodbye to me. And I got into the car and stood up on the backseat of the car watching out the back window. As mom got smaller and smaller, and then she was gone in my life. My life was like a game I'm I was always made to move one place to another, someone from the journey so they would throw my clothes in the trunk of the car, and they would take me to a new place. Upon arrival at the new place, I was told you have to stay here. I had no say in the matter. I felt like people were rejecting me all the time, and that no one really cared for me. Nobody seemed to understand my needs or my problems. And they never asked me to talk about them. My foster mom decided it would be better if I was institutionalized before I came too close or too dependent on my foster family on May 16 1966, at the age of 12, the journeys I put me in to Rideau Regional Center at Smith falls. Let me tell you, being an institution was like living in hell. First of all, I was put in the mission ward where we were made, where we made us to take our clothes off and stand before them naked. The staff didn't proceed to measure us to determine what size of clothes we need until our clothes arrive. About a week later, we had nothing else to wear as a nightgown. Once our clothes arrived, we had to put our names on every item to make sure no one stole them from us. During this day of the mission ward this staffs would take us for walks. And we were made two hands so that nobody would run away. This made me feel like a dog. The staff also line up like a herd of sheep. After two weeks in the mission Ward, I was transferred to tree D Ward, resident with 25 male patients remember that I was only 12 years old at the time. I can't tell you how afraid I was looking up at these older men who look like giants to me. We had to stand in line for our meals and for our pills, which they call candies. If I move a inch while In this line, one of the patients would attacked me. Needless to say, I only moved once in the lineup, and never again. We also had to walk down the hallway in line to get your shirts with our towels wrapped around our waist. We have to shower in the same place with no privacy, which made me feel like I was in prison. I was terrified and scared seeing all these naked men around me. They hit me with wet roll up towels, and I end up cuts on my body. I was also gang raped in the shower and pass out from this attack. There were there was lots of fighting and stealing in 3d. I fear for my life and my belongings. And older men attacked me with scissors. I was cut but nobody cared how I was treated. I was made to feel ashamed very lonely and afraid for my life. The doors to 3d were always locked and the only time I was allowed other staff members to go walks washroom, showers, meals or school. Once when I did not follow the rule is I was put in a dark room. They call this the side room where doors were a locked. I was made to sit naked on a cold floor. And when I was sitting on the cold floor, there is no toilets, there was no bathroom. So you would just bathroom on the floor, and then you when you leave the side room, you come back and you clean it. men would look in the windows and laugh at me. Another time when I did not follow the rules. They put my head in a toilet bowl and maybe kneel in a corner for two to three hours. Once when I swear they made me eat a bar of soap. I was sick to my stomach. There was never any privacy at Rideau. I did not understand why I was being treated so badly. I sat in the corner crying of fear and sadness. Not all the staffs are bad people, we had some good staffs as well. Every night I was attacked and raped by some of the patients who said, If I told the staff they would kill me, this went on for six years, and I was once told I would. I was being taken for a brain test, where they hook wires up to my head and put a piece of wood under my tongue. I was then shock. And my entire jaw shook. Nobody ever explained to me why they did this after running away or Rideau center. Several times I've been found and returned. I met a nice man\ Liel Nichols, at Rideau Reginal, who informed me that if I did not run away for a solid year, they will let me out. On May the 16th 1971 age of 18, I showed someone from that group came and picked me up, and I was happy and finally able to leave Rideau Regional center. Living there was like hell for me. It is great to talk about my story, but moving ahead in the future was difficulty because of the institution was blocking me. Many people offered to support me, but they could not get through to me. The institution was holding me back until I met Christina in 2014. And she helped me to see the way. The day I met Christina, I decided not to let the past take me down, but to live and be free from the past. First, I learned to love myself and to forgive anyone who hurt me. Then I learn to move, move on, and a balanced life after. After that I decided to share my story. Being able to share my story and experience of others has given me the knowledge and never ever let this happen to anyone again. I believe that sharing, such hardships in life are a big part of the healing process. I hope sharing my story will change the way people see others with disability. And I incourage those who have been abused to speak up and start the amazing healing process. My goal is to educate people about what happened in the institution is to do my best to ensure that this type of punishment and abuse doesn't happen again to any human being. Sexual abuse is the worst thing that can happen to anyone. Of the many others who where abused at Rideau Regional Centre some are dead, and their secrets lies with them. I'm still alive and I'm proud to be speaking for them. You just can't take a shower and wash away the horrible memories. I'm glad I did not succesfully end in my life. Because then I would just be another victim of abuse in an institution who takes his story to the grave. I'm a survivor. I know that someday I will die but I will rest well, because I actually did something that help our community and our world by speaking up for what I believe. I'm very happy today to be successful in my new life running Art Gallery, enjoying the things around me going camping, fishing, bicycle, photographing wildlife. I even enjoy the winter times in Northern Ontario. Yes, winter. I love it. I love to go snowshoeing and skiing. Learning how to do art on the computer with my photos is something I never did before. When I start to believe in myself all the worthless was gone and new creative door open for me. When I go home after telling my story, I would relive it and I would become very grumpy. Yes, me, grumpy inside. But I but I now found a way to handle these feelings. Taking photos, recreating art, finding other ways to solve the problems that have brought me to a healing process with which also his humanity. My faith in God in the universe has helped my journey. One thing I do remember when I was in the institution, this prayer helped me a lot a lot. This prayer is for all the people who died in the institution. And our prayers are for the natives who's in the people that did not make it to. And did not get out to tell their story. The prayer insane is when I was in the institution I was there and I only remember one prayer that my foster mom taught me was the Lord is my shepherd. So every time I would get abused, I would never this prayer The Lord is my shepherd. And that's all I knew, until later I now I can read the whole thing. The Lord is my shepherd I shall not want He makes me lie down in green pastures needs me to say the still waters. He restores my soul. He leaves me in the past of the righteousness for his namesake. Yay do I walk through the valley of shadow of death of fear no evil for dow are with me thy rod and thy staff. they comfort me. Thou prepares the table before me, in the presence of enemies, dow anoints my head with my cup runneth over. Surely goodness and mercy shall follow me all the days of my life. I will do well, I will do well in the house of the Lord forever. Thank you, everyone for listen to my story. And thank you again.
Eric Goll 18:25
Joe, thank you so much for sharing your story. And it was really a difficult story for me to listen to, and I'm sure for the others that are going to listen to this podcast. I'm sure their stomach turned more than once, just like mine. And, you know, I could feel the emotion for the tragedy that happened to you and the terrible experience that you live through as a child from 12 to 18. And no child should ever have to go through what you went through Joe, sexual abuse and physical abuse and emotional mental abuse. It's It's terrible. One thing that comes through to me Joe was just your resiliency and how you were able to have that experience that terrible experience that traumatic experiences at young age and still become the man that you you are today and enjoying life. And there's, you know, it's so much for us to learn from from your stories, and thank you for sharing. And I think, you know, if anybody listened to your story, and you hadn't mentioned that you were in an institution, for people with developmental disabilities, they would have assumed that you were in jail, and it's just completely completely wrong. Thank heavens at that institution Rideau regional center is is closed, it probably took way too long to to close it. But thanks, heavens, it's closed. And many other people I imagine had terrible traumatic experiences and abusive experiences, such of yourself as yourself, and thank you for helping to be the voice of those people that are no longer with us or don't have a voice. So, there's there's a couple questions that I have for you, Joe, if that's okay.
Joe Clayton 20:34 Yep.
Eric Goll 20:38
So, you mentioned that you were you ran away a couple of times. And, it sounds like the third, eventually you were you were set free. Can you tell us about those experiences of trying to escape and get out.
Joe Clayton 20:59 When I ran away from the institution. You know, like I said, there was an electric fence that time. I was in very big, it was just enough, you can just probably jump over. But the train was usually stops. And but they would say, the staffs would tell everybody say, if you ran away three weeks or four weeks, or you didn't get caught, you'd be free. And it was like a game or to me now I think about it was like a game. So but I didn't run away because of what they said I ran away is because I wanted to get away from what happened to me in there. The abuse and the things I was afraid for my life. I mean, I was raped no and treated like a criminal, well, I didn't. I was treated. I was put in an institution because I had a disability. And to me, I was a normal child. There was so many people who did not have a developed disability who were normal people. I never just throwing them in there and locking them up and making names for them saying they had this or that or whatever.
Eric Goll 22:30 Right to your point, there's nothing that you did, you were born you and because of how
other people viewed you, they stuck you in this terrible institution or jail.
Joe Clayton 22:45 Well, they just thought this would be like I read my story, institutionalize me, it would be better for me. But that's what they thought that these places were good people to go in. And when I ran away, that's what you do when you're treated bad. You run away, you know yourself and in The Great Escape, they ran away. In prisons, they ran away. But let's go, I think we'll cut that one. But maybe The Great Escape, we saw the movie, how they ran away because the way they were treated. And so I just, I didn't run away because it was a contest or a game. I heard about it. But I was scared for my life. And I and I wanted to just to get out of there. So by running away, I did draw attention to somebody and came to me and says, I tell you what, if you stopped running away for a year, you'll be out and his word came true, and I was out. So I'm glad I did run away. Because if I didn't, who knows where I would be right to this day, so thanks to that person. And I'm very happy that staff did that, you know, for me,
Eric Goll 24:16 Right. If that hadn't happened, Joe, how long do you think you would have been forced to
stay in that institution or, you know, jailed in that institution?
Joe Clayton 24:28 Some people have spent their whole life in the institution. So we don't know. I could have been worse, you know, I mean, they were doing a lot of treatments. They're redoing a lot of things. Experiments. There's a lot of things that I don't even talk about it. I just don't know how to talk about it because it's inside of me what I saw, but, you know, it's like it's unbelievable. The things that I seen and saw, the treatments that they give people I probably would be in there for a long time. You know, I because you have to understand in those days the Children's Aid Society that's what they were doing because there isn't, there is no room for a lot of people. So they figured institutions would be the best place. They would get care and love and support.
Eric Goll 25:31 But you got the exact opposite. Neglect, abuse and torture.
Joe Clayton 25:36 When the workers would bring people myself in the institution. They look around and go Wow, it looks very nice here. They were making the place look lovely. So people would think the place was nice, nice chandaleirs in the dinning rooms. Let's say all bowling alleys, swiming pools, auditorium, movies, you know, you know, like the theater, we had our own theater. We had, we had our own doctors in there. We had our own food in there. So what they did they made it look like it was a wonderful place to be. Disney Land. Yeah, Disney Land. So then people go in there and they they look around and they go, wow, this is a good place for this, you know, whoever. And so we got I think it was I think there's a word for it. I'm trying to remember the word to make people think in their mind that this is what do you call that word when the government; conspiracy. Because a lot of people walk in there and they bring their kids in and they thought it was a wonderful place. They would try to make things look good. But the inside no. And and if you if you saw my pictures, I
think I sent them to you when I was in the institution, those smile in my face, they get you to smile. They ask you to smile, to show people that you're happy. So yeah, so there was a lot of things going on there. But the thing is that happened a long time ago. And today is reality and today's a new life. And today, I want people to hear my story and to realize that we're not monsters that came out of the institution. We were human beings, and we we just want to be love and be respectful. And we are we are here now. And we just want to be happy. That's right.
Eric Goll 26:36
And you're a living example of that. So there was a lot of trauma you experienced, that you shared with us. And you said you've gone through a process of forgiveness and learning to love and learning to love yourself. I would think that forgiveness would be a really hard thing for those people that abused you and sexually abused you. What was what was helpful for you to work through that forgiveness?
Joe Clayton 28:58 That's a good question. My God, and my faith help me to learn to forgive. And, it wasn't easy it was very hard at times. I had to see a PhD doctor because I didn't love myselfand so I had to learn to say that word. So I had some people there helping, to say this word love, I love myself and to forgive all the people that hurt me. It took a lot of healing inside. But what what when I asked God and my faith and God to help me. And when I cried out to God and say, Please help me. I think that faith helped me and we all have different ways to express that to go different ways to be healed, but that healing for me it's amazing how I don't feel as angry anymore. I said this happen a long time ago. And and now here I am. But it was hard. Yes, it was really hard but with with the great supports that I had, and the great people that around me who cared about me, who helped me through this, and all the churches that I've been and the ministers who helped me in this and prayed with me. I think that my faith has helped me a lot. I had to find something and I found something, and I don't go and preach to anybody, I just live it every day and try to do my best.
Eric Goll 31:18
Yeah. Thanks for sharing that. Joe. What are your thoughts on what should happen with the institutions that are still operational Today. Many have been closed, but there are still institutions or institution like settings that people with developmental disabilities are being put in where it's not their choice. And I think even when I think about it, you know, group homes for example, where there might be four or six or eight people with a developmental disability being told that they all need to live in the same house and not really having a choice in that is still an institutional model. What are your thoughts on that? What do you think should happen with that in those institutions that do exist are institutionalized models such as group homes.
Joe Clayton 32:20 I think what I'm trying to say is, the reason why I'm reading my story institutions that are here today and group homes, they will hear my story, and they'll learn something from it. And they, and it will maybe help them to grow or maybe it'll help them to just do something that maybe we'll help them through my story. So yeah, and choose better staffs. Maybe or whatever. Yeah, it's just just Yeah.
Eric Goll 33:06 What Joe, what's your, your message for the world in terms of how people with developmental disabilities need to be treated.
Joe Clayton 33:17 We as the people, disabilities, we cry just like everybody else. We laugh like everybody else. We are human beings just like everybody else. And like I said before, we just want the world to know we are not monsters who got out of institutions. We are human beings, and we need to be respected and to be loved. And we don't need to be treated like babies. We need to be treated and treated like a human being and we... Yeah, that's that's it.
Eric Goll 34:04
Yeah, I couldn't agree with you more Joe and, you know, everybody's rights, people with developmental disabilities included, need to be recognized and honored and people disability to be treated just like everybody else. So I completely agree with what you're what you're saying and I and that goes for having choice in their life and being able to choose where they're going to live, what they're going to do, and, and you're a great example, Joe and from you sharing your story in terms of what's possible when somebody is given the right support and somebody's given, you know, tools and resources and you know, you've been able to create a wonderful life with yourself, even though you've gone through those very traumatic experiences. So moving forward just into today, Joe, can you share us with us a little bit more? You mentioned your art gallery if you could share a little bit more about your art gallery, your art and maybe where people could find you either online or getting get in touch with you to learn more.
Joe Clayton 35:22 Yes, we're good. It's quick because I'm going out. I'm going out on my phone. So we'll do it fast. Yeah, people can contact me. Log on Facebook, the Nature Natives's Art Gallery, and they can see Christina and my artwork. In the notes of the podcast episode all include your details. https://www.facebook.com/NatureNativesArtGallery And I have a business card. It's called Joe Clayton motive motive. Motor motivational and advocate speaker, a voice to the nation and I've been passing these cards out everywhere too so if people want to hire me to come out and speak I can and I don't know if I get my email out.
Eric Goll 36:26
all include it in the in the show notes in the blog for you. Joe's Email: williamjc53@gmail.com So I want to respect your your time here. And yes, I'm super grateful that you came on and shared your story with us and I, you know, I've learned a lot from you and I really admire your resiliency and your strength and your courage to share your very important story with us. So thank you so much for for sharing with me and and the rest of theworld.
Joe Clayton 37:00 Thank you. And I just want to thank you very much for inviting me to speak and give me the privilege to speak about my story and opportunity and and just say keep safe and everybody, and we'll be back to normal soon.
Eric Goll 37:25
Thanks, Joe. So a big thank you today to Joe Clayton for sharing his story and experiences with us. The acts forced upon Joe are horrible and no human should ever have to endure those experiences again. By Joe sharing his story hopefully it pushes us to continue to be better, to do better, to value all people. To value people with disabilities. To value indigenous people. To value black people. To value people of color. To value LGBTQ plus people. The social and injustices we're seeing today might look a little bit different than what we heard from Joe, but they still exist. They exist in our systems. They're programmed into our societies and they're programmed into us. We have to do better. I'm Eric Goll. Thank you for listening.
Lorna Sullivan, a global disability leader who is making significant changes inside the New Zealand social system. Lorna is the founder of the International Initiative for Disability Leadership (IIDL) and Director of Mana Whaikaha. I had the pleasure of learning from Lorna when she was part of the faculty in Michael Kendrick's Optimal Individualized Service Design Course.
In this podcast, we cover a wide range of topics, including:
- doing away with deficit-based assessments,
- enhancing a person's mana (explanation inside the podcast),
- the power of holding a positive vision,
- the rights of people with disabilities,
- tools for social inclusion,
- and much more!
About Lorna Sullivan:
Lorna became involved in being an advocate for people with disabilities by accident. She began her study in the field of Psychology, where she was first exposed to people with disabilities who she didn't know existed because they were hidden from the rest of society.
Lorna realized the damage that is done when a group of people, through no fault of their own, are marginalized from the rest of society and have no mechanism to find their way back.
Lorna shares, "If we continue to view disabled people as human tragedy and the best we can do for these people is to care for them; we will continue to deny them every aspect of life that we hold to be valuable."
Lorna helps us understand people with disabilities are the same as every other person, the same human needs, aspirations, and desires. She is on a mission to include people in all areas of society.
Lorna on Inclusion
Paraphrasing from the podcast, Lorna shares:
There is a fear of rejection, and in many cases, actual rejection is true.
My experience has been society wants to engage with people that have disabilities, but they don't know how to. We need to give them [people] the tools to do that [engage].
The best tool that we have to create more inclusion in society is to keep people close. If a person with disabilities is with other valued people in the Community, it makes it easier for other valued people to communicate with a person with disabilities. It normalizes the person.
Tweetable Quotes from Lorna:
"Never resort to the special, unless you have exhausted the ordinary. If we start in the special, we will always end in the special."
"The only thing that will change the trajectory of the lives of people with disabilities is where you have strong families, with strong vision - you have competent disabled people. Where you don't irrespective of the capacity of that person, you have dependency."
"Holding a very strong vision for a positive, meaningful, and full life isn't a trivial thing. If you don't hold this vision through the hard times, you will get blown anyway the wind is blowing."
This podcast with Lorna Sullivan is jam-packed with wisdom and is a must listen!
Also, if you like ideas discussed in this podcast, you are going to love the upcoming FREE Masterclass Workshop Series that guides families to build a strong vision for a positive, meaningful and full life that Lorna was talking about! Click Here to Sign up for free.
Love & Respect,
Eric
Resources:
Mana Whaikaha website: https://manawhaikaha.co.nz/
The International Initiative for Disability Leadership (IIDL) website: http://www.iimhl.com/iidl-homepage.html
Separated from her brother at childhood, Libby shares her journey of supporting her brother to create a great life.
Enjoy this conversation with Libby Ellis, sibling, and founder of In Charge, a consulting organization in western Australia that is assisting people with disabilities to be the authors and champions of their own lives.
About Libby Ellis: Libby works for a vivid vision of inclusion. She has walked many steps with her brother, Matthew, and for 20 years she has assisted others in taking front stage in their own lives. She supports people through the experiences, lessons, successes, and failures in self-direction over an extended period. Libbyās vision is to bring a personalized, heart understanding of what it takes to be in charge. Libby lives in Sydney, Australia with her husband, Sebastian.
Libbyās Story: On the podcast, Libby shares her family experience. This blog captures a summary of her story; I recommend that you listen to the podcast to get the full version!
Libby lives in Sydney, Australia and has two brothers. A younger brother James and older brother Mathew (who has a disability). She is married to Sebastian (who is Canadian).
Matthew moved out of the family home when he was just nine years old. He moved into a medium-sized institution, where about 15 other people lived. Later on, the institution got broken up into smaller group homes. When her parents asked for help, that was the solution. For many families, this is still the proposed solution.
Libby started to realize these injustices that Mathew was faced with when she was in her mid to late teens. Matthewās experience was a trigger for her rights based / social justice thinking. Libby was transformed through love and witnessing Matthews experiences in a disabled world. She saw his pain, vulnerability, powerlessness, and lack of control.
Libbyās family helped Matthew move out of the group home when he was 26. Her childhood experience was one of separation from her brother and trying to understand why it had to be that way.
How did the separation from your brother impact you? Libby: āI started to ask why? It has led me on my path, and in my career to date. It has taken me to a lot of lessons and experiences that I have experienced over the last 25 years of my career.ā
Can you share Matthewās experience of separation? Paraphrasing from the podcast, Libby shares: āMatthew doesnāt speak and hasnāt yet been able to share his experience. He can understand, but he is missing expressive language to share his thoughts and his feelings.
From my perspective, he experienced some not very nice things. He has some behaviors that developed as coping mechanisms. When I look at pictures of him from that time vs. images of him now, there is such a difference, and it isnāt a difference of age. I can see the impact of the disabling environment that he was in.ā
How did you make the move out of the group home? Paraphrasing from the podcast, Libby shares: āBecause he couldnāt articulate his experience himself, we had to come up with a decision-making process and take a leap of faith to help him move out of the group home. Meeting with other peers and people that have gone before you, then you can see the thing that you want because someone else has created it and is living it. You can then see the pathway forward ā this is so important.
You can see the evidence, or indicators, to a good life, that is there in other peopleās lives, but they arenāt there in your family; this can help to take that leap of faith.ā
How did you breaking through communication and behavioral barriers? Paraphrasing from the podcast, Libby shares:
This is an ongoing challenge. We had the questions: Who is going to want to live with Matthew? Who is going to want to care for him?
It is what I call the āwhat ifs..ā It is helpful to list out the āWhat Ifāsā¦ā
What ifā¦ Someone does something to him.. What ifā¦ He loses the keyā¦ What ifā¦ xyzā¦
This then becomes the basis for the safeguarding system we built.
We need to step into the unknown, but before that, there is a lot of planning and preparing.
By trusting and having a sound safeguarding system in place, we have found people, and people are out there. Sometimes it takes a while to find the right person.ā
Eric shares, ā It is a myth that people that have a disability have to live with other people that have disabilities.ā
Libby shares, āIt is hard work. The social model of disability teaches us that it is going to be hard work. But, it was also hard work when Matthew was in institutional settings. In institutional settings, it was hard work to make a change because of the powerlessness [against the organization]. Now it [the social model] is hard work, just a different kind of hard work. For example, finding someone to live with Matthew. But now we have control and power.ā
What are some of the other key lessons you learned? Paraphrasing from the podcast, Libby shares: āWe are not automatically an advocate. Families are blocked by low expectations, not having a sense of what is possible, past negative experiences. We are often making choices within very narrow perspectives.
Also, there is a difference in advocating for ourselves and others. Families need to be careful about what we ask for and what we create. The history of what has been created by families includes many of the services that have been started, and there is a pattern of segregation as a result.ā
Eric: As families, it is our responsibility to educate ourselves. Take workshops, connect with thought leaders, listen to podcasts, and connect with families leading the inclusion movement. One step you can take is to take the FREE Empowering Ability Mini-Course. To learn more click here.
Libby and I also discuss the topics of life being more than a service, the impact of agency, family constellations (psychotherapist, Bert Hellinger), and tipple win thinking. You can hear all of these insights by clicking play on the podcast player below!
I express my sincere gratitude to Libby for coming on the podcast and sharing her story and wisdom!
Love & Respect,
Eric
Resources:
Libbyās Website: Incharge.net.au Email: Hello@Incharge.net.au Connect with Libby on linkedIn https://www.linkedin.com/in/chargeaustralia/
In this conversation with Dr. Margaret Newbury Jones, here out referred to as Margaret, of SHADE Consulting and Counselling we dive into the topic of sexuality and disability. We discuss what self-advocates, families, and supporters need to know about sexuality and Intellectual/developmental disability (IDD). She answers the questions; Why is knowing the language of our bodies so important? Where do I go to find a partner?, What is the role of a paid supporter, and Should we be allowed to have sex and watch porn in the group home?.
Margaretās career has focused on working with folks of all ages with intellectual and developmental disabilities (IDD) and other disabilities for 25+ years. She worked as a public-school special educator for 15 years before beginning to work as a consultant and counsellor focusing on trauma, sexual health and folks with IDD. She works directly with clients with IDD as well as their families and supporters and is known for providing engaging workshops for families, self-advocates, front line workers, and other professionals. She is most importantly a family member of a sibling with IDD, her best teacher.
Why is it so important for us to talk about sexuality for people with an intellectual or developmental disability (IDD)?
Margaret: āEveryone is a sexual being; it doesnāt matter if you have a disability or not.ā
Eric: Other than sexually transmitted infections (STIs), pregnancy, general health are there other reasons we need to be talking about sexuality for people that have an IDD?
Paraphrasing from the podcast, Margaret shares; āSafety. People with IDDs are much more vulnerable to being abused and taken advantage of. Also, a lot of it is about autonomy and making informed decisions and not feeling like someone else gets to make those choices for you. We donāt have to allow others to make those decisions, that is a personās right [to make those decisions] when they are an adult.
In terms of statistics, now big of a problem is sexual abuse?
Paraphrasing from the podcast, Margaret shares, āThere arenāt any good solid stats ā the research you referenced is from the 80s and 90s. [Eric referenced stat ā 83% of women, 35% of men with IDD are sexually abused] The stats can vary from 2 percent to 60 percent. But what we do know, is that rates of sexual abuse for people with IDDs higher than the general population. Also, just like the general population, people with IDDs donāt report, donāt know how to report, [or donāt have the language to know they were sexually abused as we discuss below].ā
What do self-advocates need to know about sexual health?
Paraphrasing from the podcast, Margaret shares: āLanguage ā if folks donāt have the right language to tell us that something happened, how can they tell us? If you donāt know the language of your body, how can you tell somebody when something goes wrong?ā
Margaret shares a story sex educator Meg Hicklingāshttps://www.amazon.ca/Books-Meg-Hickling/s?rh=n%3A916520%2Cp_27%3AMeg+Hickling work where Meg was going into prisons and working with inmates and teaching them sexual health. When she had the opportunity, she spoke to sex offenders and asked them how they looked for their victims. The sex offenders told her that they look for people that donāt have the right language for their bodies. They said to her that if they do have the right language, they are more likely to tell. If they donāt have the language, they are less likely to tell because they arenāt having those conversations.
We also go deeper into the topic of consent on the podcast.
Margaret also shares that it is important that people that have an IDD know the basics of sexuality, sexual health, healthy relationships. On the podcast, she answers one of the most common questions she is asked by her clients with an IDD, āWhere do you meet or find a partner?ā
What do families need to know about sexual health?
Paraphrasing from the podcast, Margaret shares;
1) Make sure they have the language of their body. 2) Role of a supporter is a bridge to relationships, not to be the relationship. 3) As families, we need to let the person grow up and not be a perpetual child. If you are 50, you still have 50 years of life experience. 4) Recognize that puberty can be one of the most normalizing things that has or will happen to a person with an IDD.
What comes up in your work around menstruation?
Paraphrasing from the podcast, Margaret shares;
People are put on birth control to manage menstrual periods because families and caregivers feel like it is challenging to manage menstruation. We can teach menstrual management. Families will also say that the person is protected if someone abuses them. Margaretās response is, āDoes that make abuse okay?ā We should be keeping them safe from the get-go.
We also discuss the issue of consent and menstrual management on the podcast.
Margaret shares, āWe tend to do things that are timely. We donāt take the time to make sure that people fully understand, fully consent, and fully process what is going on.ā
What do supporters and organizations need to know about sexual health?
Paraphrasing from the podcast, Margaret shares;
1) Define the role of the supporter as a bridge to a relationship, not being the relationship. 2) Organizations need to have a sexual health policy. Everything is then dealt with similarly, and it addresses the individual sets of values that people delivering the support have. 3) Supporters need to be aware of their own beliefs and values.
We also get into interesting questions of:
Should people with disabilities be able to have sex in the group home?
Should people with disabilities be able to watch porn?
To hear these answers, you need to listen to the podcast!
I thank Margaret for the engaging conversation and for sharing her wealth of knowledge on sexual health. Margaret has also provided us with a library of resources on sexuality and disability below.
Love & Respect, Eric
Resources:
Sunny Hill Education Resource Centre (SHERC) ā This is a lending library with many sexual health-related materials.
Email: sherc@cw.bc.ca
Website: www.bcchildrens.ca/sherc
Sexuality Education for People with Developmental Disabilities (2018) ā Elevatus Training ā www.elevatustraining.com
Life Cycle ā How We Grow and Change: A Human Development and Sexuality Education Curriculum. Varicheck, S.M. & Tolle, R.K. (2008). Life Cycle Education Consultants. www.lifecycleeducation.com
www.real-talk.org
Websites (these are a combination of safe sexuality websites as well as websites addressing trauma/self-regulation):
- www.beaconhouse.org.uk
- www.safehandsthinkingminds.co.uk
- www.self-reg.ca
- www.northstarpaths.com
- www.booksbeyondwords.co.uk
- www.tascalberta.com
- www.teachingsexualhealth.ca
- www.safehealthschools.org
- www.urbandictionary.com
- www.pflagcanada.ca
- www.advocatesforyouth.org
- www.sexualityandu.ca
- www.planetahead.ca
- www.plannedparenthood.org/info-for-teens
- www.wontgetweird.com
- www.teenhealthsource.com
- www.goaskalice.columbia.edu
- www.teengrowth.com
Books
- Aspergerās Syndrome and Sexuality: From Adolescence through Adulthood ā Henault, I (2006). Jessica Kingsley Publisher
- Autism-Aspergerās and Sexuality ā Puberty and Beyond ā Newport, J & Newport, M. (2002). Future Horizons
- Boys, Girls, and Body Science ā Hickling, M. Harbour Publishing
- A Five is Against the Law! Social Boundaries: Stright UP! An Honest Guide for Teen and Young Adults ā Dunn Buron, K. (2007). Autism Asperger Publishing Co.
- Itās Perfectly Normal: A Book About Changing Bodies, Growing UP, Sex and Sexual Health ā Harri, R. (1994). Candlewick Press
- Protocol for Personal Care (Adult or child) ā Available at Community Options http://communityoptions.bc.ca/about-us/protocol-books/
- Sex, Sexuality and the Autism Spectrum ā Lawson, W. (2005). Jessica Kingsley Publishers
Dr. Margaret Newbury Jones Contact Information
www.shadeconsulting.ca
778-215-0132
info@shadeconsulting.ca
It has been a little over one year since my sister, Sarah has come onto the podcast ā and a lot has changed for Sarah. The most significant change has been Sarah moving out of mom and dadās and into a home of her own. This single decision to move out of mom and dadās made 1000 decisions for Sarah and our family. This one decision for Sarah to have a home of her own has allowed her to grow into the capable young woman that she wants to be.
Before the Move
On the podcast, Sarah shares her journey starting from leaving the school system and spending the better part of a decade living in our parentās basement.
Sarah shares, āMom and Dad did everything for me. I had no choice [living in their home].ā
Our parents (and me) made decisions and did everything for Sarah - we acted out of love and with the best intentionsā¦ BUT, this created the institution of home. Iāve realized a person doesn't have to live in an institution or a group home to have choice and control stripped away.
Eventually, Sarah pushed hard to have her voice heard, which created a lot of conflict and tension in our family. It caused enough pain and pressure for our family to finally act instead of continuing to live our lives by default. We had a lot of conversations as a family and engaged with a facilitator to help moderate the discussion and plan an optimal path forward. Sarah wants a place of her own; however, mom and dad thought it was too big of a jump. So, we all agreed on the interim step of Sarah and me living together for two years.
The Experience of Moving out and Mom and Dadās
July 2018, Sarah moved out of mom and Dadās place and in with me (her brother).
On the podcast, Sarah shares how the move out of mom and dadās house gave her the change of environment needed to open the door for her to develop valued roles of; contributing adult, roommate, and daughter. She also shares the ups and downs she has experienced in her new home when it comes to:
Decision making: significant increases in choice and control
Supporters: building and managing her support team (in replacement of momās caregiving)
Opportunity to do everyday things: meals, laundry, cleaning, etc.
Dealing with overwhelm.
Breaking down co-dependency: shifting the relationship with mom from caregiver to mother.
*Take a listen to the podcast to hear these insights.
What was helpful for you in making this change?
Sarah discusses the three things that were most helpful for her:
- My support circle; helped to make decisions, to provide new ideas and perspectives, and to provide social and emotional support.
- Talking through challenges to process how she was feeling.
- Meditation.
Take a listen to this podcast to get Sarahās perspective and the wisdom she has to offer you!
... If I am not there toĀ care and look out for myĀ son or daughter, then who will be? It is a bigĀ question, but it is also something we avoid talking about becauseĀ we have to realize ourĀ own death. BUT, if we don't have these conversations - what are we leaving behind?!Ā
From the hundreds of families I have spoken with I've learned that it is a massive hole. If you are the go-to person for your loved one with a disability, and they are dependent on you and you aren't there for them anymore it is impossible for one person to step into your old shoes. It causes a ton of stress, anxiety, and disrupts several people's lives.Ā
This is why we need to think about the relationships in our loved one's life, this is why we need to be intentional about a Personal Support Network. In this video, I show you how to do this.
CLICK HEREĀ to learn how.
Enjoy,
Eric
PS. Having a strong Personal Support Network for your loved one with a disability is the best way I've found to support someone after their parents can no longer care. BUT - a Personal Support Network is more than that, it will provide in ways that you could have never imagined in the short term.
CLICK HEREĀ to learn how!
Over the past few years, Iāve been thinking deeply about how to best support families with a loved one with a disability to create a happy and full life for their loved one - and a good life that isnāt dependent on parents (forever)ā¦
I know this is possible because I have friends with disabilities who have created this life - my family is going through this transformation, and the families I work with are going through this transformation. In this video, I share one of their stories with you.
... and I've found that there is there is ONE key thing in common for all of these familiesā¦ They have Created a Vision!
As families, we need to be able to imagine the best possible life for our loved one with a disability so that we can then create it. Ā
Well, actually there are TWO things all of these families have in common. There are two paths that you can choose as a family (and neither is risk-free). In this video, I tell you about these two paths - and I share with you the ONE path that these families are choosing to create the best life possible for their loved one.
As families, we have the question of who will care for our loved one with a disability when we no longer can?
People with intellectual and developmental disabilities have less than 20% of the number of relationships compared to a typical person.Ā
This leads to loneliness, which is more harmful to our health than smoking a pack of cigarettes every day. Ā In this video, I explain how to build relationships.Ā
You can create a happy and full life for your loved one with a developmental or intellectual disability - that isn't reliant on you. You can make this transformation happen for your loved one and your family.Ā
To do this... We must elevate our expectations for what is possible.Ā
Start by focusing on relationships. In this video, I also show you how to create and deepen relationships for your loved one.
How to create a life worth living? ā¦ am I implying that there are lives that arenāt worth living? This a big question that I ask you to consider for yourself.
People with developmental disabilities are devalued and suppressed (largely unconsciously) by society, our families and even ourselves (I am guilty too).
When a person is devalued, it is very difficult to access the opportunities that everyone else can access, and often results in isolation, loneliness, and suffering. Again, I ask - A life worth living?
Well, what I do know, is that I can do better, and we can do better, and our society can do better.
And, and it starts with a vision.
Why do we need vision? Well, as human beings the sense that we trust the most is our eyes, we are looking out for dangers and rewards. Also, where we look is where we go - If we are surfing and we are looking at the rocks, we will end up on the rocks, if we are looking at the beach, we will end up on the beach. Here I am talking about vision as one of our 5 human senses. However, these truths about our sense of vision apply to our future. If we can imagine, or see in our minds, where we want to be 5 years from now... we can trust that we can get there, and we move in that direction. We are looking at the destination we want to get to 5 years from now and will move in that direction, just like the surfer that looks at the beach and steps off their board into the soft sand (instead of crying out for help to be saved while being pushed upon the jagged rocks).
In this conversation with Michael Kendrick, we discuss 'Imagining Better" and we attempt to answer; What is vision? Why is vision so important for people with IDDs? and, How do you go about creating a Vision?
Michael Kendrick PhD. is a well-known international consultant in Human Services. Michael is involved in consulting, education and evaluative work with many governments, private agencies, advocacy groups, community organizations, universities and colleges across the globe. His work has involved training, evaluations, strategic planning, critical problem solving and confidential advice in the areas of mental health, disability and aging with an emphasis on persons requiring long term support.
What is Vision (the future looking kind)?
MK: "It is the way we see the world. It differs from one person to another. It is possible for people to have different content in their vision. We might have no vision on some subjects because we have never seen them before, where other areas we might have detailed visions. Vision might change over time - our life experiences shift our vision.
For example, the decision to see the good in people would be a way to approach people as if there is good in people. If your vision is that people are nasty or unpleasant, then the way you will see people are nasty because that is what you are looking for."
Why is it important for an individual with a Developmental Disability to have a vision?
MK: "A vision with opportunities can create life-giving possibilities. Without that there can be no sense that these possibilities exist. [For example] A lot of people with disabilities were raised with the belief that work and employment would not be a part of their future. This persuades people through conditioning and reinforcements [what they will not work] through other peopleās world views. This might mean that people have many undeveloped, unrecognized potentials and capacities that are never explored because of the limited vision for them and also the conviction that they donāt exist."
EG: If you donāt have a plan, you are part of someone elseās plan, and their plan might not be that good for you.
Society's Collective Vision:
MK: "There is also a collective vision for society, such as the indigenous people in Canada is one that is devaluing. All societies tend to produce devalued groups at the margins. People might not be conscious of it at the surface."
People with DDs are devalued by society. How do you break free of societal devaluation?
MK: "A disability is seen as a negative feature of a person, people then generalize from the disability to the person entirely. You are no longer a full human being, you are a human being that is lacking. If you wanted to change that, then you would have to say that your disability need not impact the fullness of your life potentials.
With the person-centered movement ā it is the person that matters, not the disability. It starts with what is the fullness of this personās humanity and how can this be realized. The person is seen as full of potentials, notwithstanding that they live with some sort of impairment.
Be honest and accurate about the disability, but not giving it more emphasis than its needs. Living with the impairment in a practical way."
How do we go about creating a vision?
MK: "People with developmental disabilities are much more likely to be in segregated settings.
We can ask, What would be the inclusive or socially integrated option, vs the segregated option?
Families have been schooled for the segregated option. Need to ask the question, what would the inclusive option be?
There might be impediments, but that doesnāt mean the person canāt join, but we just need to figure out how to overcome it. What would support the person to be successful in that situation?
Vision can shift, and it can create new life opportunity. Vision creates realities.
From Social Role Valorization (SRV) we can look at the Culturally Valued Analog (CVA). [CVA is simply] What would a person of the same age be typically doing with their life? If you are 6 years old, would you be in school? If you are 25 years old, would you be working or furthering your studies? It helps people look at things in normative terms, which builds vision for what the person could conceivably access.
You find your place in the CVA, to do what suits you by following things you might be interested in. CVA is massive and there are so many opportunities, you just need to find what appeals to you. [You can ask] What resonates with that personās nature?"
Where do I start when creating a vision?
MK: Always do things with others. This gives you more resources than trying to do it yourself. Not everyone is good at imagining better, you want to pick people that are imaginative. You build vision over time - revisit and refashion on an ongoing basis.
Should you discuss shared world views and values before starting the visioning process with others?
MK: "To the extent that you can do this, it is very consciousness raising. It makes us aware of values, principals and also priorities that people have. For instance, people donāt like to do things that are difficult. When you are going to break new ground, you have to open yourself up to new challenges. You have to look for people that can not only imagine better but are also interested in the doing.
[Also,] seek examples of imaging better. If someone has already achieved what you are doing, it is conceivable. For example, in the early days when we were trying to get people a home of their own, there werenāt many examples. Now there are many.
See what people have already accomplished. Stories and videos.
Join social networks that share a common interest. For example, joining a group of other progressive-minded families. It is harder to do this in isolation."
If you are looking for examples and ideas a good place to start is the Partners For Planning Learning Centre.
Michael Kendrick and I also discuss family mentorship, role modeling, life-giving vs live-denying choices, and leadership on the podcast. These are important parts of the conversation, which you can access by clicking on the player below.
In closing MK Shares (in summary):
āVision won't prosper unless there are leaders that mobilize people around the vision. You have to have buy-in and you have to win the buy-in of others. [This is] Not just individual leadership, but collective leadership. Investments in visionary leadership are a good investment. You also need leadership renewal because it is a long journey. People need ways to become renewed and to get energy. A lot of this comes in the way of social networks. Renewal of vision is important, so you need renewal. It takes leadership to get the implementation of vision.ā
If you received value from reading this blog or listening to this podcast episode I encourage you to share it with someone else you feel would benefit.
The Empowering Ability Podcast and Blog are made possible entirely by you, the support of listeners and readers. Thank you for considering a contribution to this work with a subscription!
Love & Respect,
Eric Goll
Here is the secret.... it is to start with developing valued roles. What is a valued role? A valued roles is the answer you give to the question 'What do you do?' when you meet someone new. [more on valued roles below] Guest Genia Sthphen also shares her story as a sibling, a mother to two sons, and how she has helped to create the good life for her son Will.
Professionally, Genia is a midwife to many, and an activist with a mission to band together with families to joyfully pursue the good things in life. She recently launched the Good Things in Life, which is an online community for young families who share a vision of the good life for their kids with disabilities.
You can listen to this conversation in its entirety by clicking play on the player below, OR by clicking one of the following links to listen on your favourite podcast player; iTunes, Spotify, and Google Play.
Growing Up With a Sibling that has a Developmental Disability (DD)
Genia is the 3rd of 4 daughters, and her younger sister Kate has a DD. Geniaās two older sisters are a fair amount older, and it was really just the two of them (Kate & Genia) when they were growing up.
Genia remembers going to appointments with Kate where they had Kate do silly things, like hold onto the pencil, and they would pull on it until she let it go. Kate didnāt care much for holding onto the pencil and as a result, was diagnosed with having poor muscle tone. But, Genia and Kate thought it was funny because Kate would drag Genia around the house on her back by her toes.
Genia recalls, āAt 5 mom sat me down on her lap and told me that Kate had a disability. Mom was serious, it was an occasion, She explained Kate would learn more slowly than other kids. I responded by crying. I was trying to figure out what was expected in this situation, and it was clear to her that the appropriate response was to be sad.ā
It was a big deal for Geniaās mom. She had never experienced someone with a disability, Her mom was terrified, intimidated, and overwhelmed. It was something worth crying about for her.
Geniaās mom reached out and started to connect with other parents and other people that knew more than she did. She surrounded herself with this community and exploded into a powerful advocate. She stopped delivering the information in a way that elicited sadness and started having really high expectations. She had connected with some people that had worked with Dr. Wolf Wolfensberger, who developed the social theory of Social Role Valorization (SRV).
Genia attended her first SRV workshop at 15. It taught her language, and how the world works for people that are devalued.
Key Insight: Connecting with other families is important. Not just getting connected, but who you get connected with. What are their beliefs and mindsets? How you deal with grief and fear is guided by your mindsets and fear for a person with a disability.
When Geniaās second son Will was born he was very very sick. Genia recalls, "we werenāt sure he was going to make it. They were telling the family that he would have significant disabilities." Geniaās response was āWell yeah yeah yeah, but is he going to make it, let's focus on what matters here. And he did [make it!].ā
What is Social Role Valorization (SRV)?
GS: āSRV is the universal ways that people are devalued in society. Devalued people are not able to access the good things in life the way that valued people are. For example, devalued people do not have the same opportunities for personal growth, education, meaningful work, freely given relationships, pursuing their interests. People access the good things in life through the roles we play in society. It is also how we connect and understand each other. One of the first questions we ask someone is āwhat do you do?ā. It helps us understand and relate to each other through roles.ā
There is No Risk-Free Path
GS: āIf your major fear is that someone is going to be hurt or rejected, and the way that you prevent that is by keeping people protected and isolated from the people that might hurt them, then that leads you down a vision that likely includes a lot of services and people paid to keep the person safe.
Alternatively, if your mindsets and beliefs are that safety for vulnerable people comes through relationships, this leads you down a path of life in the community.
There is no risk-free path.ā
What Does The Good Life Look Like for Will?
Listen to the podcast to hear how Geniaās family has thought about the role of student for Will. Genia and her family thought through the things that were likely to increase peopleās high expectation and positive image of Will in the role of student, starting from the age of 2!
GS: āWill is now 12, and we think about for his peer group what are the typical valued social roles that a person holds? And, what are the kinds of opportunities that those roles bring? Then we pursue those things.ā
Want proof!?! Watch the video below.
Video: Will Enjoying The Good Things In Life
Key Insight: Look to what is typical for people that donāt have a disability at that stage of life and focus on the roles the individual could hold to create your vision. Additionally, the person supporting needs to understand the social role and also have the social currency to help them get there.
In this podcast, Genia and I also cover topics including raising the consciousness of devaluation in our society, the experience of being a mother with a child that has a disability, and what the experience of having a sibling with a disability.
Tweet-able Moments from the conversation with Genia Stephen:
"Devalued people are not able to access the good things in life the way that valued people are. For example, devalued people do not have the same opportunities for personal growth, education, meaningful work, freely given relationships, pursuing their interests."
"...if your mindsets and beliefs are that safety for vulnerable people comes through relationships, this leads you down a path of life in the community."
"Look to what is typical for people that donāt have a disability at that stage of life and focus on the roles the individual could hold to create your vision."
If you received value from reading this blog or listening to this podcast episode I encourage you to share it with someone else you feel would benefit.
The Empowering Ability Podcast and Blog are made possible entirely by you, the support of listeners and readers. Thank you for considering a contribution to this work with a subscription!
Love & Respect,
Eric Goll
Resources:
Will Social Media: Theadventuresofwill.ca
The Good Things in Life --> For Parents of young children with IDDs. Goodthingsinlife.org.
Contact Genia by email: Genia@goodthingsinlife.org
Creating Valued Roles with Janet Klees: Click Here
Too Busy to listen to the podcast now? Listen on the GO!
The Empowering Ability Podcast is available on iTunes and all other major podcast apps so that you can listen while on the go from your smartphone!
Yvonne defines grief, how to support others that are grieving, and shares her 7 takeaways to navigate through life, grief, and end of life.
In this episode of the Empowering Ability podcast, we have an in-depth conversation on grief with nurse and author, Yvonne Health. In this conversation, Yvonne defines grief, how to support others that are grieving, the difference between quality and quantity of life, and her 7 takeaways to navigate through life, grief, and end of life. Yvonne is an inspirational Speaker, author of the book āLove Your Life to Deathā, and a TV and Radio host.
(Note: 25% of 'Love Your Life to Death' book sales purchased through this link go directly to Community Living Ontario)
You can listen to this conversation in its entirety by clicking play on the player below, OR by clicking one of the following links to listen on your favourite podcast player; iTunes, Spotify, and Google Play.
Why Are We Talking About Grief?
YH: āI didnāt choose this, it chose me. Looking back at a 27-year nursing career we donāt talk about grief, we donāt talk about death and dying until it arrives. Then we try and navigate through it. This causes excessive suffering. Grief is a part of our journey, but by avoiding it we are creating excessive suffering.ā
Seeing this suffering as a nurse Yvonne had to do something about it, so she took a leap of faith wrote a book about it, and here we are.
As as a nurse, Yvonne became attached to people and she suffered tremendously. She realized this and she became aware of how she was suffering and became curious about it. This led her to have more conversations with other carers.
YH: āI asked fellow caregivers, are we well prepared for grief death and dying? And they said, no. Then Iād have conversations with two people with the same diagnosis of terminal cancer and their families and see drastically different experiences. One family was acknowledging and allowing all feelings - laughing and crying and being open, and being truthful about what was happening. That person died more peacefully and the family navigated through their grief and was able to get through and find happiness again. Then there were other families who were angry and bitter, and demanding more treatments and there werenāt conversations being had. There was no eye contact, I could feel the suffering. I could see this over and over, and I had this inner voice telling me we had to see something different.ā
What is Grief?
YH: "Grief is whatever makes your heartache. Often it is death, but it can be divorce, a diagnosis, complications at birth, job loss, not making the team. Grief is a part of our life. Anger is often a very big part of grief, and it can come out."
How Do We Support Someone Experiencing Grief?
YH: āI [we often] donāt know what to do, I [we often] donāt know what to say. We are more comfortable avoiding people when they are grieving. But the most important thing is that we need people to just show up. A hug, a text, an email, sit in silence. Just sit with someone and acknowledge and allow their feelings and not try and fix it. You canāt fix grief, you just have to allow it. We have to get back to allowing our humanness. You are qualified to just show up.ā
Quality of Life vs. Quantity of Life.
YH: āWhat is enough quality of life is enough for one person isnāt acceptable for another person. There is always a treatment that we can do, but the question is should we? Wouldnāt it be wonderful if we have the conversation before something happens? The time to have these conversations is not when you are facing life or death situations.ā
EG: āWe can create a thought experiment for ourselves and think - okay if I got cancer and I was given a prognosis of 2 years to live with intensive treatment that is going to reduce my quality of life for that time, or I could have 6 months to live with a high quality of life. Which would I choose? And, you can do this now from a rational place now, rather than a fear-based place when actually faced with the decision. This decision will likely also change over time as we age, or our life situation changes.ā
YH: āThese types of situations being made when things happen can fracture families, and create divides that are difficult to repair. Letās normalize creating an end of life plan. Imagine the suffering that we can alleviate.ā
EG: āOnly 50% of people have a will. Get your will in order. This is especially important for a family where there is a person with a disability because any transfer of your estate to a person with a disability can drastically impact their social assistance benefits.ā
Yvonneās 7 takeaways to navigate through life, grief, and end of life
-
The Next Best Time is Now! The best time to talk about, plan and prepare for grief is when we are young and healthy.
-
It Takes a Village to support: the ill, the caregiver, the dying, the bereaved and each other.
-
When someone is grieving, Just Show Up!
-
To be empowered, resilient and compassionate, Show Up For Yourself First!
-
Structure Your Life in such a way that you are self-reliant.
-
Find your Post, and hold onto it.
-
What will Your Legacy be?
To get the summary description of Yvonneās 7 takeaways go to http://the7takeaways.ca/ to learn more, or you can listen to us discuss these 7 takeaways on the podcast by clicking below.
Tweet-able Moments from the conversation with Yvonne:
āLove & gratitude are the answer, no matter the question.ā - Yvonne's mother, Waves of healing
āOur legacy is what we create in every moment of every day. It is how we make people feel.ā -Yvonne Heath
āIt [life] isnāt joy or sorrow, it Is is a rollercoaster, and when we take care of each other we can get through it [life] with greater joy.ā -Yvonne Heath
If you received value from reading this blog or listening to this podcast episode I encourage you to share it with someone else you feel would benefit.
The Empowering Ability Podcast and Blog are made possible entirely by you, the support of listeners and readers. Thank you for considering a contribution to this work with a subscription!
Love & Respect,
Eric Goll
Resources:
Yvonne's Blog/ vlog
Yvonne Heath's 7 takeaways
Book: Love Your Life to Death
(Note: 25% of 'Love Your Life to Death' book sales purchased through this link go directly to Community Living Ontario)
Listen on the GO!
The Empowering Ability Podcast is available on iTunes and all other major podcast apps so that you can listen while on the go from your smartphone!
Learn about the Open Future Learning training resource for supporters of people that have an IDD, & how Ben Drew is fighting the oppression of people with IDDs.
In this podcast/ blog I had a pleasure of speaking with Ben Drew, Founder of Open Future Learning. Ben has over 20 years of experience working with people with an intellectual or developmental disability starting as learning disability nurse, then going on to create an individualized housing and support service, and he is now the Founder of Open Future Learning. Ben is also an incredible storyteller and even though this podcast is lengthy, it is a pleasure to listen to.
Due to the length of the podcast, the blog is broken down into Part 1, and Part 2. In Part 1 of the blog, you will learn about the Open Future Learning training resource for supporters of people with intellectual or developmental disabilities (IDDs), and Ben's life journey to fight oppression and create ordinary incredible lives for people with intellectual or developmental disabilities. In Part 2 of the blog, you will learn about 3 foundational support principals for exceptional support. As always, all of these insights can be heard by clicking play on the podcast player below.
You can listen to this conversation in its entirety by clicking play on the player below, OR by clicking one of the following links to listen on your favourite podcast player; iTunes, Spotify, and Google Play.
What is Open Future Learning?
Open Future Learning is an Online learning resource 100% dedicated to the field of intellectual or developmental disabilities (IDDs). The platform is developed for support staff, but anyone that touches the lives of people with IDD can benefit from the resource. The platform has a wide range of learning modules (for example: abuse prevention to social valued roles) which are delivered as interactive multimedia books. Open Future Learning is known for their short films and they have an on-demand video library with just over 700 short films featuring the leading global thinkers on IDD. They have also created a new product called Side-By-Side learning.
Ben explains, ā We have the saying from self-advocates, āNothing about us, without usā, but we donāt live up to this. Training is one of those things. So we developed āside-byāsideā learning. The person that receives the support and provides the support do the learning together. They are short 30-minute interactive learning modules."
Ben continues, "Much of the content is created in collaboration with many of the leading minds in the developmental disability community. It is a really financially efficient way to get people to access these leading minds, compared to only the select few that were able to go to a conference."
The platform is designed for support organizations and priced accordingly, however, if you are an individual learner or a family and you want access to this resource you can email Ben and he will help you to access this resource. Email hello@openfuturelearning.org
Ben Drewās Mission To Fight Oppression and Create Ordinary Lives for People with IDDs:
Paraphrasing from the podcast, Ben shares his story:
āI grew up in the UK in a small town called Devon. On the outskirts of the town, there was a small community for people with IDDs. It was kind of like Camphill without the farm. My best friend from school lived in that community, his parents managed the community. He lived in this cluster of houses where people with IDDs lived. It was great because we played football (soccer) on demand, it was mostly guys, and I got to know all of these people in the best way. When these guys came into the town the way that other people interacted with them was different. They teased them, they spoke behind their backs about them. This always sat with me and it was the starting point to wanting to work with people with disabilities. Went I was 18 years old I went to a summer camp for people with IDDs in the US, and really enjoyed it. Then came back to the UK and got a job with a guy named Gary Kent. He lived in a large residential home with 20 people with IDDs. It was a hospital that had been converted for people with IDDs to live after the institutions closed. Gary lived there as well but decided he wanted his own home. He left and purchased his own home in a nearby village. When Gary came back to the residential home he said he had to close down the residential home. He had seen the other side of life. He was learning how to cook, he was in his own community, he had control over his life and his environment - and he wanted everyone else to have that.
There was a guy that lived there [in the residential home] that was physically abusive, and there was a guy that was a runner. When the runner chose where he wanted to live, he never ran away again. The guy who was a hitter moved into a home of his own and he stopped hitting people. You can be getting really good support and if the environment isnāt right and the location isnāt right - you can only so so much.ā
Insight: This was a huge lesson for Ben when he saw the change in people when they got control of their lives. These oppressive environments occur in residential homes, but they can also happen within our family homes. Speaking from personal experience, my parents home became an oppressive environment for my sister Sarah (who has an IDD) due to a lack of choice, social isolation, and lack of transportation. Most of Sarahās decisions were made for her and most things were done for her. Of course, these things were done with the best of intentions, but this caused more stress and anxiety on everyone in the household, everyone entering the household, and suppressed opportunities for Sarah to grow. Sarah has moved out of her parents home and into a home shared with me where she now has choice and control of her life.
Ben continues with a leadership insight:
āVulnerability of leaders is important. Gary was always incredibly transparent. He would always share his mistakes and things he had messed up. The residential home was just another thing. In order to empower everyone else underneath him, he had to be that way. The people underneath him could also make mistakes, they could also mess-up. I see cultures in organizations coming down on people. If you make a mistake it is a warning, if you make 3 mistakes you arenāt allowed to do things anymore. That culture just doesnāt work.ā
Ben then when on to set up service to help 100 people with IDDs over 6 years to buy or rent their own home, manage their own supports with their own budgets, in Bristol UK, using the formula Gary gave him. Ben then moved to New York, and that is where he started Open Future Learning.
Part 2 of this blog is coming on December 18th, with insights on 3 fundamental support principals that are foundational to great support. If you want to learn about these core support principals now, you can do so by listening to the podcast.
Ben is also the creator of memes that help to nudge people in the direction of being more accepting, more inclusive, and to develop the understanding of what it is like to live with an intellectual or developmental disability. Here are a couple of my favourites:
If you received value from reading this blog or listening to this podcast episode I encourage you to share it with someone else you feel would benefit.
You can also support this work by subscribing. This podcast and blog is supported completely by listeners and readers like you. Thank you to those that have supported by subscribing!
Love & Respect,
Eric Goll
Resources:
http://www.openfuturelearning.org/
https://www.youtube.com/user/OpenFutureLearning
Email: ben@openfuturelearning.org
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
In this episode, you will learn all about Personal Support Networks! You might have heard of support circles, circles, microboards, or aroha's (there are probably names I'm missing), but theses are all forms of Personal Support Networks. Rebecca Pauls, Director of Planned Lifetime Advocacy Network (PLAN), shares with us with us what a Personal Support Network is, how they can benefit you, and how to go about building one.
Rebecca is the Director of Planned Lifetime Advocacy Network (PLAN), a Vancouver-based social enterprise that partners with families and people facing social isolation to secure their future by mobilizing relationships and leveraging community assets. Since joining PLAN three years ago, Rebecca has led a complete re-design of programming to integrate principles of person-centred planning, ABCD, narrative therapy, and independent facilitation. After demonstrating the strength and flexibility of this community approach, Rebecca is regularly invited to consult with organizations about how it can be scaled and applied to population groups across North America.
You can listen to this conversation in its entirety by clicking play on the player below, OR by clicking one of the following links to listen on your favourite podcast player; iTunes, Spotify, and Google Play.
How did PLAN Originate?
Rebecca shares:
āPLAN is an advocacy group in BC, which started with a group of parents that came together and founded PLAN 30 years ago. These parents believed their sons and daughters could contribute and be included in the community. The work of PLAN is charting a new path that is full of opportunity for people with disabilities. They are thinking about the present, but also the future. What happens when we are gone? This is when the idea of personal support networks really began to mobilize.ā
One of PLANās ultimate aims is to create a Good life for families, which includes; Friends and relationships, making a contribution, being empowered to make choices, a place to call home, financial stability, parents have peace of mind. The basis of all of these things is to have people and relationships to do life together with. One of the main tools used at PLAN to accomplish this is personal support networks.
What is a Personal Support Network?
We all have a network ā a group of people we depend on for companionship, support and decision making. This typically includes our family, friends, and neighbors, but also professionals like counselors or financial advisors. This group can be considered your āPersonal Support Networkā, and it reflects your personal interests, abilities, and needs. The specific individuals will vary by person and may change over time. Some networks will include many, while others just a few people. (Reference: PLAN website)
What is the Purpose of a Personal Support Network?
Paraphrasing from the podcast Rebecca Shares:
To ensure that no one is alone or so no one is stuck in isolation. Sometimes we hear the saying that loneliness is the only debilitating disability. A personal support network is to ensure that everyone can live in an inclusive community. There are all sorts of things people in the network can do together and accomplish. At the heart of it is recognizing that we have the support that we need to live the life that we want and dream of for ourselves.
What are you seeing for people with Disabilities that have an intentional personal support network, vs those who do not?
Paraphrasing from the podcast Rebecca Shares:
āI think the difference comes in when the unpaid relational support is involved. When there isnāt a personal support network they might live a life where they donāt have friends. When a personal support network is involved and parents arenāt able to be involved, there are people that are there to play important and specific roles. At PLAN we have mentors to support families with building and maintaining these Personal Support Networks.
In different times in a personās life, they might depend on a personās personal support network in different ways. When they are a young person or things are going well they might do more fun and social things. At different points in life when challenging situations come up, or there is a need for planning and advocacy it might be more formal. You can often hear these networks being called natural supports, or circle of support, or microboard (which is the most formal way of setting up a personal support network). The most important thing is not what you call it, but in the way that people are working together. It is important not only for people with disabilities, but it is more like a way of being, and a way of living our lives. It is sometimes difficult to build or maintain those personal networks. PLAN has a community connector or mentors to help keep everyone connected.
How does someone build a personal support network?
Paraphrasing from the podcast Rebecca Shares:
āWe start by getting to know who the person is, their gifts, what they think about, what they like to do, and the things that they care about. We build relationships based on common interests. When we build the network we focus on gifts and the uniqueness of each person. Then we think of who are all of the people in your life and build a relationship map. If there arenāt a lot of people in your life we think about if you did have people in your life, what roles would they play?
Then we look to the community. We believe that our communities are full of welcoming places and other people with gifts. When we look to build the connections we look for groups that are already in place. The role of the community connector is to create opportunities for the person to get connected.
Turning those relationships into a network is a matter of talking about what is important. We encourage people to share what is important in their life right now. The community connector can help to create the opportunities for people together.
As we reach a time where a generational shift is happening, the parents that created inclusion across the country are reaching their 70ās the rubber is hitting the road in terms of these networks and transition.
Building networks is a little bit counter-cultural, we are getting busier, and we are living more isolated lives, we donāt know our neighbors as much as we used to. ā
You can access the resources on building personal support networks (e-books and online courses) mentioned on the podcast in the resource section at the bottom of this blog).
Who plays the community connector role?
Paraphrasing from the podcast Rebecca Shares:
āSometimes there is a natural connector in a personās life. In other situations, the family might hire someone to play that role (Like the service PLAN offers). Some organizations train their personal support workers to take a network approach. The supporter will ask the question, who else can we involve?
Personal support networks usually come together every month or every other month to do some planning and to talk about what the priorities are for that month, and how they can support each other.ā
What do personal support network meetings look like?
Paraphrasing from the podcast Rebecca Shares:
āSome are very structured and some are very natural. We plan based on what that person is comfortable with, what the current needs and priorities are. At PLAN every 6 months we create work plans. For the next 6 months, what do we want to accomplish? Do we plan events and celebrations, look for job opportunities, or find a new apartment. Each month the community connector will send a monthly update on the progress that is made.ā
On the podcast, Rebecca gives examples of what support networks and roles people play in a support network can look like.
What are you currently learning at PLAN?
Paraphrasing from the podcast Rebecca Shares:
āPLAN has done a good job helping families build networks which have resulted in friendships and community contribution, but we are starting to really work toward helping people put those networks to work. Passing the baton from mom and dad to other people in the network, before we reach a crisis point and being proactive. Identifying the key roles, and what is the succession plan. Inviting network members and transferring the knowledge to the next generation. It is succession planning, what do we need to know and how do we start to pass this along. Roles like trustee, guardian or power of attorney, or more practical things like who is going to help this person go to the bank or transportation.ā
PLAN has also developed a new planning tool that works to answer the question, do families have peace of mind? This is an interesting question because peace of mind is dynamic and it changes. This new planning tool helps families to understand if they have peace of mind in the different areas of life, and it helps families to think about what they need to do to get there. Listen to the podcast to learn more about this thinking that Rebecca shares.
A final message from Rebecca, āPersonal support networks are about relationships. They are about living intentionally together and supporting each other and sharing what is important to us. For me personally, because of all of the changes we see happening in families and people sadly passing away, there is a real urgency for us to begin asking the question, āWhat does this {personal support networks] really look like?ā, and, āAre we intentionally supporting each other?ā. Do we know people that donāt have any relationships?, and asking ourselves, 'what we can do?'. There are all kinds of possibilities to connect and we just need to go after them."
If you received value from reading this blog or listening to this podcast episode I encourage you to share it with someone else you feel would benefit.
You can also support this work by subscribing. This podcast and blog is supported completely by listeners and readers like you. Thank you to those that have supported by subscribing!
Love & Respect,
Eric Goll
Resources:
Safe and secure, by Al Etmanski
Online 6-week course called Personal Support Network Facilitation
Planinstitute.ca has several online resources in their learning center
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Joe Dale and I explore the untapped labour pool of people with disabilities, uncover the benefits of employing people with disabilities, and discuss approaches people with disabilities can take to gain employment.
Today businesses are asking, āWhere do we find good people?ā, and people with disabilities are asking āWhere do I get a job?ā. This podcast/ blog with Joe Dale, Executive Director of the Ontario Disability Employment Network (ODEN), explores these questions.
Joe has worked in the field of disability for over 35 years and spent much of that time addressing issues related to employment for people with disabilities. He is an internationally renowned speaker, speaking to business, governments, and not-for-profits on the issue of strategic engagement of people with disabilities in the workforce.
The Ontario Disability Employment Network (ODEN)
ODEN is a professional body of employment service providers united to increase employment opportunities for people who have a disability. They have over 110-member agencies, all in the business of helping people with a disability get into the workforce.
ODEN focuses on 4 core areas:
- Engaging and educating businesses on hiring people with a disability. They also support businesses to develop successful hiring practices.
- Supporting disability employment agencies with training that builds their capacities and skills.
- Advocating on employment for people with a disability to the provincial and federal governments.
- Engaging and educating other stakeholders that prepare people with disabilities for the workforce, including school boards and family groups.
The Employment Landscape
Paraphrasing from the podcast, Joe shares:
āThere are a lot of barriers for people with disability to enter the workforce. However, there has been a drastic change in the last couple of years. Businesses are now moving from awareness of the benefits people with a disability can provide to their business, to how do we employ people with disabilities. And, thinking about what does it look like in our workplace?
We have done a lot of awareness over the last 10 years and this is starting to pay off. Businesses are also challenged with the labour shortages, so businesses are now looking at what was once considered non-traditional labour sources.ā
Currently the unemployment rate is 5.5% in Canada, but what does that look like for people with disabilities?
Paraphrasing from the podcast, Joe shares:
āStatistics Canada reported that 49% of people with disability are not in labour market. This doesnāt include people who have never had a job or have given up on trying to find a job. For the 51% of people in the labour market, we are seeing anywhere between 16 ā 25% employment rate. From this, we can assume people with a disability that are not working in Canada is around 70%.
In the US, they do their research differently, they show about 18% of people with a disability are working.ā
What Do Businesses Need to Know About Disability?
Paraphrasing from the podcast, Joe shares:
āBusinesses donāt know what they donāt know. Businesses arenāt fully aware of disability as a demographic. We try to illustrate what disability looks like in their community.
16% of Canadians identify that they have a disability across Canada. This is a very large demographic. If you add family and loved ones of those people, 53% of Canadianās are impacted by disability. These people have a very strong connection to disability.
What would this look like in your place of business? We do this through case studies and by breaking down the myths and stereotypes..
We are shifting mindsets away from charity and pity, a mindset of contribution. This is what businesses need to see to get them to buy in and employ people with a disability in a sustainable way."
Learn can learn more about the Myths to employing people with a disability in this podcast/ blog with Laura McKeen.
What is the business case to employ people with a disability?
Paraphrasing from the podcast, Joe Shares the following case studies:
Case Study 1: Walgreens
Walgreens is a large pharmacy retailer in the United States that has inclusive hiring practices. In 2006, they opened a new distribution center in South Carolina. When staffing this distribution centre they started with the goal of staffing 1/3 of this workforce with people that have a disability. In the end, they hired 40% of their workforce with people that have a disability. At the end of the first year, this distribution centre was the most productive centre for all of Walgreens in the US.
A year later they opened a distribution centre in Connecticut and they went in with the same mindset and hired 45% of people with disability. It opened in 2007 and has had the highest production of all Walgreens distribution centers every year since it opened. They have a 63% reduction in employee costs! Lower absenteeism, lower turnover, and fewer workplace accidents. What they are seeing is higher productivity at lower cost. This equates to profits.
More on the Walgreens Case Study. Click Here
Case Study 2: Mark Wafer, Tim Hortons
Mark Wafer owed 6 Tim Hortonās coffee shops in the Greater Toronto Area, in Ontario Canada. 15% -20% of their staff was people who had a disability. Employees with disabilities had an 87% higher attendance rating, and no work injury claims. Markās coffee shops had a turnover of 38% in an industry where the average was 110%. At $4,000 per new hire, there was a significant reduction in costs. His employees with a disability had almost 0% turn over, and employees without disabilities had a 55% turn over, which was still half of the industry average. He put it down for employees being engaged because he is an inclusive employer.
These costs savings are often offsetting the costs of a little bit slower production or the cost of accommodations.
Additionally, prior to Mark selling his business, his coffee shops ranked #1, #2, #3, #4, #5, and #6 in key sales/ profitability indicators among 500 Tim Hortons coffee shops in Central Ontario.
More on Tim Hortons Case Study. Click Here
Additionally, Joe shares:
āMany businesses are contacting ODEN today to learn about how to employ people with disabilities. We would like to get to 16 -20% of employees in a workplace be people with a disability.
We also see the growth rate for people with a disability that get into the workplace their growth rate is phenomenal. Within 2 or 3 weeks they can become a different person and can exceed expectations. This is due to the opportunity, environment, and role modelling.ā
How can families and agencies help people with disabilities to gain employment?
Paraphrasing from the podcast, Joe shares:
āItās really about raising expectations. Overall our expectations of people with a disability are too low. We need to identify the goal that we have for people that have a disability. If the goal is for the person with the disability to have a job, we need to create a different path. We need to change the educational system to support this goal.
For families, if employment is a goal what happens at home has to change. We need to ask questions like, āWhat do you want to be when you grow up?ā and we need to ask āDo we give them chores?ā. We need to raise expectations, have high goals, and change the path to support these goals.ā
I agree with Joe, we need to think bigger and get out of the disability box. This requires a switch from deficits thinking to contribution thinking, and we need to be a champion for that individual. Once you have people holding low expectations of you, you live up to those low expectations. We live up to expectations, so hold high expectations and be a champion for people with disabilities by upholding their dreams and influencing others to do the same.
Joe shares:
āThere is research out of the US that shows the indicators of labour market attachment for people with severe disabilities are:
- A single paid job while in high school
- Family members and others around that have high expectations
This leads to asking the question, āHow do we mirror the experiences for people with disabilities the same as those around them?ā Peers and siblings. This includes responsibilities, chores, and part-time jobs. This helps the person to also learn what they like, what they donāt like.ā
Learned Helplessness
What I have observed in my work is that parents and supporters are trying to be helpful by doing things for the person with a disability, but by doing this it creates dependencies. It teaches the person with the disability that they canāt do things. Now when that person with a disability is asked to do something they have learned that they ācanātā do the task, even when they are in a new environment. In positive psychology, this behavior is called Learned Helplessness. However, this can be changed with learned optimism. By the way, my family has been caught in the learned helplessness trap. I am not judging here, simply pointing out my observations.
Work or Activities?
Paraphrasing from the podcast, Joe shares:
āIt is a challenge when activities, like bowling or swimming, get in the way of the work opportunity. Generally, we donāt do these things instead of work. This is a values proposition that needs to be considered by families. The more conditions we place on work, the more difficult engaging in work becomes.ā
Insight: Put the job first, remove the conditions on the employment.
What suggestions do you have for people with disabilities that are 25 to 45 years old, and have never been in the job market?
Joe shares:
āIt might mean backing up a bit and starting with a part-time job that many of us would have had while in school. Such as at McDonald's. But donāt let the progress start there. We need to start creating that path.
The more experiences a person has had the better their decision making becomes on what they would like to do 1 to 2 years from now or even tomorrow.ā
Fair Pay for People with Disabilities
Joe shares:
āWorking for free, or saying the person doesnāt need equal pay is a very bad attitude. Society values people that work, pay taxes and contribute, and much more so than people that live off the tax system. To see someone contributing to the tax system in your community brings value to that person.
It is important for peers and supervisors to see that person as valuable. If two people are working side by side and one person is getting paid full wage, and the other person is receiving less than full wage, it tells the rest of the world that that person is not as valuable as the person making full wage beside them. That is a real damaging long-term scenario. The perception is that the person with a disability as being seen as valued is critical. I fight against anything that looks like less than a fair wage. If the perception is that the person is less valuable, who is the person that is going to be let go in an economic downturn? The person that is seen as less valued.
Also, It is a myth that by working the person will earn less money with the Ontario Disability Support Program (ODSP). No matter what the person earns they will always have more money in their pocket at the end of the day. They never lose never money by working. It is a fallacy that people will have less money if they work."
I agree with Joeās perspective on fair wage. Additionally, consider the person with a disability that is receiving less than an equal wage. If that person is perceived by others as not valued, then they will not feel valued themselves. If I am not feeling valued I am not going to be excited about going to work.
If you received value from reading this blog or listening to this podcast episode I encourage you to share it with someone else you feel would benefit.
You can also support this work by subscribing. This podcast and blog is supported completely by listeners and readers like you. Thank you to those that have supported by subscribing!
Love & Respect,
Eric Goll
Resources:
ODEN Website: Odenetwork.com
Tim Hortons Case Study: Click Here
Walgreens Case Study: Click Here
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Learn from world class experts on housing for people with developmental disability.
Iām excited to bring you this podcast/ blog episode on the best of creating a home for people with intellectual/ developmental disabilities (IDD). In this episode, I have compiled audio clips that provide insights from 9 interviews Iāve completed with guests on creating a home for people with disabilities, along with my insights as a family coach. My desire to share this with you also comes from the experience of supporting my sister (Sarah) to create a home of her own over the last year. On July 4th 2018, Sarah moved out of our parentās home and became roommates with me. This is Sarahās first time living in a home of her own. There has been many events along the way that have come with incredible growth for everyone in our family, and support network.
9 Insights to Creating a Home Episode (I.e. Best of Home Episode)
This episode is a collection of insights shared by 9 guests who I consider as experts in the area of creating a home. Each guest has either directly been involved in creating a home for people with disabilities and/ or has evaluated housing services for people with disabilities. Iāve constructed this episode in a way that shares what I believe will lead to the best outcomes for people with disabilities and their families. You may agree or disagree with the perspectives shared in this episode, however, I invite you to consider these perspectives to determine what is true for you.
You will notice that I am using the language creating a home vs housing. I do this because housing refers to the physical building, and the physical building is only one component of what must be considered when creating a home for a person with a disability. When creating a home we must also consider the personās other needs; their supports, their relationships, and what they will be doing once they are living in the space, etc..
Creating Your Home Workbook (Free)
Additionally, I have updated the āCreating Your Home Workbookā, to include these insights and perspectives. The original workbook was downloaded over 100 times, and Iāve sent the updated version to those of you who have already downloaded the original workbook. This workbook is designed to guide your thinking to create the best home for an individual with a disability, and to encourage you to take the first steps to make this home a reality!
Claim your FREE 'Creating Your Home Workbook!
The 'Housing' Problem:
If you are reading this blog you intuitively know that there are many additional considerations for a person with an intellectual/ developmental disability (IDD) when creating a home. Supports that exist to help vary by jurisdiction globally. Where I live, in Ontario Canada there is what many would call a housing crisis. As of 2016, the Ontario Government Ministry of Community and Social Services was supporting approximately 18,000 people with a developmental disability in group homes and other supported living, and an additional 9,700 people were on a waiting list for residential supports. So, the reported demand for residential housing support is over 50% greater than the supply. The demand is likely higher than reported because it obviously doesnāt include people who have not registered for the list. Reference: (The Toronto Star, 2016)
In many areas around the world there are long waiting list for people with a developmental disability in search of government supported housing. As you continue to read, I am going to outline that government supported housing is actually not the optimal solution for an individual with an intellectual/ developmental disability (IDD) in the majority of cases. You are better off designing and creating an individualized home that meets the desires and needs of the individual, which provides them control over their life.
9 Insights on Creating a Home for a Person with a Disability
1) The individualized one person at a time option is the best option for people.
(Michael Kendrick (PhD) is a well-known international consultant in Human Services. Michael is involved in consulting, education and evaluative work with many governments, private agencies, advocacy groups, community organizations, universities and colleges across the globe.)
In episode #047 I ask guest Michael Kendrick, āWhy is investment in group homes an outdated idea?ā
In Summary Michael Answers:
- Group Homes are based on the assumption that people with disabilities should live together. We [everyone else] chose to live with people we are compatible with.
- Group homes are forced shared living, and this often creates a stressful living situation.
- Investment in group homes creates the idea that it is the only option for people.
- Individualized one person at a time is much better because it gives you much more choice.
- The group home option is no longer at the leading edge. It is a dying service model.
Many jurisdictions have a freeze on the growth of segregated living across the globe.
2) The people living in group homes want a home of their own.
(Lynne Seagle, CEO of Hope House Foundation, a not-for-profit organization started in 1964 by family members, whom had sons and daughters with developmental disabilities, in Virginia, USA.)
Paraphrasing from podcast episode #045 Lynne Seagle shares,
āā¦finding out people didnāt want to live in group homes started with a survey. The survey asked the question, āDoes everyone like where they are living?ā Everyone said yes. It was odd to ask 120 some folks a personal question and get the same answer. We then re-worded the question to, āHow do you want to live?ā. And, the flood gates opened. People answered 1 of 3 ways, from most dominant to least; 1) I want a home of my own, 2) people wanted a job (most people were in day programs or workshops), and 3) friendship and romance.
Lynne continues, āWe [Hope House] had defined excellence as meeting all the rules ā [our] paperwork was clean, [we had] no employee grievances, well-kept homes, and low staff turnover. We were looked at as the model in Virginia, USA. BUT, when we gathered these themes [truths] we reviewed our program plans and not one program plan addressed these needs of people. This was a daunting realization for our organization.ā
As I reflected on my conversations with Lynne Seagle and Michael Kendrick, I thought about what it would look and feel like to live in a group home. I would be forced to live with people that I donāt know, and many of my freedoms that I enjoy would be taken away. I wouldn't always be able to do what I want to do, when I want to do it. Iād lose control of who is entering my home. This sounds terrible, and it is. Now to help you think about this further, there are similarities between group home living and living in a nursing home, or retirement home. When you think about living in a nursing home or retirement home do you get excited about the experience?
An important point to make here is that it is the model and system of group living that is oppressing people, not the people working in these models. The people are typically some of the most kind and caring people in the world. It is the model and system we need to think differently about.
3) Creating a home is about building a life, the house is only part of the picture.
(Ron Pruessen, is a father to Caroline, who has a developmental disability, is a member of Opportunities Mississauga, and he is the Chair of the Ontario Developmental Services Housing Task Force. The Ontario Developmental Services Housing Task Force was given $3MM in annualized funding, which has funded 18 pilot projects from the 200 proposals submitted.)
In episode #016 I ask Ron Pruessen, āAs father, someone that is involved with a family group, and the housing task force what have you learned along the journey about housing?ā
Ron shares, āThere has been a lot of learning and frustration. The Government [of Ontario] is not doing enough and has a limited menu of things that they are doing [in housing]. There are many great ideas at the grass roots level. The variety of ideas is enormous, people have been extremely creative in imaging their futures. Individuals have been doing the visioning, and they see the possibilities out there.ā
[In my opinion, this highlights the importance of individual options.]
Ron shares, the most significant example of creativity he has seen is building partnerships. The community can provide the best solutions. Not just because you can mobilize financial resources, but also because you can develop a wealth of opportunities (educational, social, employment), and this is incredibly important. The house is an important part of the picture, but it isn't the whole solution. Community connections improve quality of life, but the government can't do this, we have to do this.
Ron shares important insights in episode #016, which I have summarized above. However, there is one point that we discussed in that I do not completely agree with, and I failed to address this point previously. Ron shares, āI think the assumption for many years is that this [housing for people with a disability] is a government responsibility. It is the equivalent saying people need health care, which is provincially funded in the province of Ontarioā¦. It is the equivalent of what we do for senior citizens in providing pensions and support for housing opportunities. It is a government responsibility, there is no question about it, I would argue. And, I donāt think the government isnāt doing enough. But, it is also a community responsibilityā¦. What the community can do will provide better solutions to the problems.ā
I agree with Ronās comments that many people do hold the assumption that āHousingā for people with disabilities is a government responsibility. This is the mindset that many of us continue to hold and it is perpetuating the ācrisisā state many families find themselves in. I disagree that creating a home is fully a government responsibility. Here is the reason why... When we [families] hold the assumption that the government is responsible for housing for our loved one with an IDD we give away the power that we have. We can put ourselves in a helpless state, or victim state. When we have hold this mindset that the government is responsible we accept the menu of sub-optimal options that the government provides us, and this puts us at the mercy of long waitlists, in many jurisdictions. And, this is a waitlist for sub-optimal options! If we hold the mindset that the government is responsible for creating a home for our loved one we are at the mercy of the government, and we give up our control. The good news is that we can take our power back. If families are feeling like a victim of a āhousing crisisā [i.e. you are waiting for government solutions], I invite you to consider making a choice to become a creator and to take your power back. In other words, the idea here is an invitation to take an active role in creating a home, vs a passive role waiting for a sub-optimal government solution.
On the flip side of this point, I agree with Ron in that we need to keep advocating to the government that more funding is needed to support our families in implementing/ funding our one person at a time solutions to creating a home. I believe Universal Basic Income (UBI) is a possible solution to the poverty situation that many people with a disability face. A realization that I have come to is that, the government isnāt going to solve our problems, but they can be a part of the solution.
[If you want to learn more about UBI I recommend listing to Sam Harrisās interview with Andrew Yang on the Waking up Podcast.]
4) Give people their own front door, and separate housing and supports.
(Chris Woodhead is the Group Director of Housing and Business Development for Dimensions UK. Dimensions UK supports 5,000 with learning disabilities and autism spectrum disorder (ASD).)
In my interview with Chris, In episode #025, he shares, āDimensions UKās aspiration is for people to have their own front door. Not all of Dimensions UKās accommodation is in line with this aspiration at this time. For example, some housing is larger scale accommodation with 10 people living in one large accommodation, but over time Dimensions UK looking to remodel for a smaller scale more personalized approach. Housing and support are generally separate. Dimensions holds a core value that where you live is important to quality of life (health and wellbeing), but people should be able to choose who supports them. You shouldnāt have to move if you are unhappy with your support. There is a delineation between the tenancy agreement and the support contract. We operate around choice and control. If we get their housing right, and we get their support right then we hope they will continue to choose us.ā
Chris also shares the Activate Model they have been piloting, which considers 8 different domains in each personās life; 1) Physical health and wellbeing, 2) Communication and social interaction, 3) The physical environment, 4) Skills, 5) Relationships, 6) Service Staff, 7) Service Management, 8) Wider organizations. [Again, the physical environment (the house) is just a component of the solution.] The early results of this model in practice resulted in a 60% reduction in challenging behaviour, and an increase in satisfaction for support staff. If you would like to learn more about the research visit the Dimensions UK website.
5) Housing is a Community Issue.
(Janet Klees has been involved in the lives of people with disabilities, their families, and allies in community for over 30 years. Currently, Janet is the Executive Director Durham Region Family Resources and Supports. Janet is the author of three books which are directly rooted in her experience with families, (We Come Bearing Gifts; Our Presence has Roots; Deohaeko Decades).
In episode #022, Janet shares, "Housing is a community issue, not a disability issue. In our most recent housing project, we partnered with Brockville and District Association for Community Involvement on a housing project called, āHousing is a Community Issueā. We asked families who were interested in housing to join us in discovering housing solutions together and 35 families showed up. This is incredible because we told the families up front that we donāt have any money to give. It shows how understanding families are that they are going to be part of the solution. Even in this housing crisis, people are still finding housing. With our project, we are thinking about what are the ways that people are finding to build, buy, rent, and to figure out housing. Then asking, āwhy can't these ways fit families that are looking for housing.'
This is an affordability issue, not a disability issue. If people need renovations it is a cost issue. We need to ally ourselves with all the people that are struggling for housing. There are organizations like Habitat for Humanity, and Options for Homes that we can ally with. If the Ontario Ministry of Community and Social Services (MCSS) is involved in housing they build a service, not a home. Families only have to think about their own son or daughter and think about works best.ā
An important observation from Janet, āThe change comes when the family realizes that this is their issue to work on.ā
7 recommendations from Durham Region Families for for all of us (Government, organizations, and families) to think about as we work toward creating a good life for people with disabilities.
-
Home, housing and support are 3 different things and must be thought of separately.
-
Most housing challenges are affordability, not disability.
-
People with disability contribute to their communities, they are not a burden.
4.Getting good housing and support doesn't mean taking away the individualās control of their life.
5.Providing renovation dollars allows families to be creative with their current home today (stabilize current situation) and allows for flexible housing in the future.
-
Stop funding congregated mega projects for people with disabilities, and disabilities / seniors. Commit to typical housing options and neighbourhoods.
-
Where there are families that are willing to create a home in community the government needs to support with resources. These are cheapest, most effective models, and they are currently the least funded [in Ontario, Canada].
6) A coach or independent facilitator can support you to create and implement your vision for creating a home (and a life).
(Jessica Cave, Creative Housing Supports Coordinator at Bridges to Belonging in Kitchener, Ontario. Jessica supports people with developmental disabilities and their families who are looking to make the next move in their life.)
In episode #031, Jessica shares that she supports families by helping to figure out what is best for the individual. Her organization starts with the belief that people can live in the community, and that they have the resources and readiness to make it happen. In other words, they start from a place of capability and abundance, which fuels us as creators!
Jessica takes a person directed approach and works directly with families in the Waterloo Region helping them to take this new mindset, and she facilitates the family through creating their vision for housing. Once the vision is created Jessica helps the family to think about what resources the family already has, such as, friends, community, support, and financial. Then they will think about and take the next steps are to bring the plan to life!
7) Creating a Vision: The Best Home for the Individual
(Marg McLean, Executive Director of Community Living St. Marys, and her team have been helping people with disabilities create their home, and support solutions since the 1980's when people were leaving institutions.)
In episode #013, I ask Marg āWhen thinking about creating a home, what should families be considering?ā
Marg shares that people are going on the waitlist [for housing in Ontario, Canada] without thinking, talking, and planning what an ideal home looks like for them. (Note: This is exactly what my family did at the start of our housing search for my sister. Your family is not alone if this is the situation you are in currently.) What works well is for families to come up with a vision of what would be a good home in community.
Marg provides 4 guiding questions to begin your thinking on creating a vision for home:
- Where do you want to live?
- What kind of building do you want to live in?
- Who do you want to live with?
- What supports will be needed for your home?
[Note: the free āCreating Your Home Workbookā includes these questions along with other questions and exercises to guide you in creating your vision for your home.]
Also, in Episode #013 Marg shares the story of 3 individuals that her organization supported to create their home. I also share my previous experience of living with my friend, who has a disability. These stories might just give you some ideas and I recommend you listen to this episode!
8) No one can tell you the right answer. You have to figure it out for yourself!
(Keenan Wellar is the Co-leader of LiveWorkPlay, a developmental service agency that works to facilitate community connections and relationships in Ottawa, ON.)
In episode #017 Keenan shares his reply to families that ask him, āWhat should we do in housing?ā
Keenan shares that this is a question is deeply personal, and it isnāt a question that he can directly answer for a question. So, when asked this question, Keenan takes a coach approach by asking a lot of questions in order to draw out the best answer for that family. A couple of questions that Keenan will ask are;
- Where do most citizens tend to live in your community?
- What are the barriers the barriers to living in 'ordinary' housing? Are they actually barriers?
Keenan also shares that he will guide families through a 'thought experiment' by considering what it would look and feel like to move in to an apartment, which is a typical first home for many of us moving out of our family home for the first time.
[This is included as an exercise in the free āCreating Your Home Workbookā]
9) Be a creator: Start conversations, build relationships, and uncover community resources.
(Alice Mainland is the mother to Michael Mainland, who has a developmental disability. Michael is 39 years old, has a home of his own, a job, and a life in community)
In episode #023 Alice Mainland shares the story of her familyās journey to create an ordinary life with her son Michael. What I am highlighting from my conversation with Alice, is the creator mindset that she brought to the challenges that her family faced.
In summary from my conversation with Alice, 2 months before her son with an intellectual/ developmental disability (IDD), Michael, graduated from high school, Alice realized they had a problem; there would be nothing for Michael once school ended, and one of his parents would have to stay home to support Michael. As a result, the family would drop down to a single income. Alice started making phone calls to various support agencies, local government, and basically anyone with a phone number that might be able to help. The people she called were willing to help! With the support of a few agencies the family was able to piece together support for Michael, which allowed the family to stay a two-income family. It was a patchwork, but it was a patchwork that worked because people wanted to help.ā
Later in the podcast episode Alice shares, āAt 29, Michael had the opportunity to move out of [his parents] home because of a conversation 4 -5 years earlier when I was searching for support for Michael.ā
Alice shares, āYou donāt know what resources are available to you until you ask. ā
If you received value from reading this blog or listening to this podcast episode I encourage you to share it with someone else you feel would benefit. You can also support this work by subscribing.
Love & Respect, Eric Goll
Resources:
You can dive deeper into each of the insights by reading the blog or listening to the full podcast episode for each guest.
1) The individualized one person at a time option is the best option for people.
047: Mindshift & Enlightened Attentiveness, with Michael Kendrick
2) The people living in group homes want a home of their own.
045: Uncovering the Truth: We are Oppressing People with Disabilities, With Lynne Seagle
3) Creating a home is about building a life, the house is only part of the picture.
016: Housing Mini Series Part 2/6 - "On a waiting list for 22 years - this is what I've learned", With Ron Pruessen
4) Give people their own front door, and separate housing and supports.
025: Housing: Giving People Their Own Front Door, with Chris Woodhead
5) Housing is a Community Issue.
022: Lessons in Building Community, Housing, and a Good Life, with Janet Klees and Members of the Deohaeko Support Network
6) A coach or independent facilitator can support you to create and implement your vision for creating a home (and a life).
031: Innovative Ideas and Mindsets to Housing, with Jessica Cave
7) Creating a Vision: The Best Home for the Individual
013: Housing Mini Series Part 1/6 - Creating a Home, With Marg McLean
8) No one can tell you the right answer. You have to figure it out for yourself!
017: Housing; "What Should We Do?", With Keenan Wellar
9) Be a creator: Start conversations, build relationships, and uncover community resources.
Download your FREE copy of the āCreating Your Home Workbookā
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Author and speaker, Donna Thomson, takes us on the journey of a caregiver.
In Episode #050, I had the pleasure of interviewing Donna Thomson and we dove into the topic of caregiving. Donna is an author and speaker on issues relating to family caregiving, disability and aging. She is a patient and family advisor on health research and policy. Donna teaches family caregivers how to advocate for care in hospital and in the community.
If you find this read interesting you can listen to the conversation in its entirety by clicking play on the player below or searching āEmpowering Abilityā on your podcast player, such as, Apple Podcasts, Spotify, Google Play.
Before my interview with Donna I took the opportunity to read Donnaās first book, āThe 4 Walls of my Freedomā, which really helped me to gain perspective on what it is be like to be a mother with a child that has medical needs. It gave me perspective on what it must have been like for my own mother, when faced with the medical challenges my sister experienced at a young age. Quoting Donna from her book, āMothering a child with medical needs is a very public, but lonely endeavor.ā
On the podcast I ask Donna, āCan you share your experience so that others listening can also understand your perspective? And, so other mothers maybe donāt feel so alone?
Paraphrasing from the podcast Donna shares, āMy son, [Nicholas], has CP [cerebral palsy] and a complex disability. At 4 months [old] he was diagnosed, and it was like he became the property of health care and social care systems. We began to be assessed and I felt as though I was under a microscope. [I was] Grateful for the assistance because you feel like it is the key to the future success of your child, and you want to present as a competent parent. Then you learn when you present as a competent parent thatās reason for people to abandon you. If you seem to be doing well then people arenāt going to help you. In order to access the help you need at home you have to demonstrate failure as a parent. What do these assessments and scores about my baby say about me? Am I a success or failure as a parent? All of this brought the bond between my son and I closer and we would have very intimate moments when alone at home.ā
I ask, āDo you feel that this pushed you into being a victim?ā
In summary Donna replied, āNot exactly. We had to demonstrate to the system what our needs where, and to do that they had to show them that they were struggling.ā
Finding Pleasure in Peeling the Potatoes:
In a previous conversation with Donna it came up that she had to find pleasure in peeling the potatoes and this connects directly to her book title āThe Four Walls of My Freedom.ā On the podcast, I ask Donna, āWhy do we need to find pleasure in peeling the potatoes? And, how do we do that?ā
Paraphrasing from the podcast Donna shares, āI canāt leave my house, so how can I make a rich life of this? Watching the lady peeling the avocados next door through the window, [I admired] the way she was able to peel the avocado without breaking the skin was beautiful. I started thinking I can do that. Then I started thinking about how well I am peeling vegetables. It was sensual, secondly, I was feeding my children. I linked what I was doing with the purpose of what I was doing.
I started thinking about the tiniest things that I was doing as forms of meditation, and it made me happy. I wasnāt doing anything differently, I was simply looking at myself doing the jobs of feeding the kids, doing the laundry, and making the bed.
Locating the extraordinary in the ordinary. We have the benefit of the slow movement lived loud in our families. We do things more slowly, we are more contemplative, we do things more purposefully. There is opportunity in finding meaning and joy in the way we live.ā
Everyone is a Caregiver.
Donna shares, āThe word caregiver applies to everybody. At the end of the day we are talking about dependency needs met by someone else. A pet, a friend, we all look after each other even when we are perfectly healthy in the prime of our lives. You are not feeling good I will bring you over some soup. We donāt have anything in our society to say that caring for someone is okay. The pendulum has swung so far away from providing care [being accepted in our society].
In my first conversation with Donna, she helped me to realize that I am a caregiver. When I was honest with myself it was the truth, and it felt weird. My ego didnāt want to accept this language because of the societal stigmas that are attached to caregiving. At first, it made me feel weak. Upon reflection, and acceptance that I am a caregiver there is a strength that comes with being a caregiver. Caregiving is one of the most connected and real human experiences that we can have, it has been wired into our biology as we have evolved as an advanced species. As Donna shares, āEveryone is a caregiver.ā
So I ask you, how are you a caregiver? I invite you to celebrate that you are a caregiver, and not to fight it or deny it. What are the benefits that caregiving brings into your life?
Donna's Life as an Activist:
Paraphrasing from the podcast Donna Shares, āMy idea was do to a post mortem on our family experience and the support that we received, or did not receive, and to determine what was helpful and what was not helpful. I thought this would be useful for other families and policy makers. I became involved in inclusion. I became active in the family movement, and I became involved with the Ottawa affiliate for PLAN, which is all about citizenship.
I became aware of and met Indian economist, Amartya Sen, who developed āThe Capability Approachā. The Capability Approach looks at how people can be supported by the community and the State so that they can have a life that they value. It is about individual choice and being supported to have a life that you value within circumstances of adversity. Sen was looking at extreme poverty in India, but I used this approach to look at my family.ā
Donna used this approach in her book 'The 4 Walls of my Freedomā looking at how people can make personal choices, express their personal values, and live in the community to do this. Donna and I further discuss inclusion, and I recommend you listen to this episode to hear these perspectives.
Donna's New Book:
Iām co-writing a new book with Dr Zackery White, a professor at Queens University in Charlotte North Carolina.
Donna shares, āDr. Zackery White is writing about Caregiver identity and how it is so difficult to express the transformations that happen when giving high levels of care to someone. Lots of things grow and lots of things die when you become immersed in giving care to someone.
Giving people language to create the narrative to understand your life in the now.
My part of the book is the whatās next. What can you do to be an advocate and take action; personal support networks, what are the assets in your community [asset based community development], and online tools including support groups. These are actions you can take to thrive in situations of adversity. It will be titled something like āTransformations in Caregivingā ā.
I thank Donna for coming on the podcast and sharing her deeply personal experiences, and her insights on caregiving. Thank you for doing the work you do Donna!
If you received value from reading this blog or listening to this podcast episode I encourage you to share it with someone else you feel would benefit.
Love & Respect,
Eric Goll
Resources:
Donna's Blog: The Caregivers' Living Room www.donnathomson.com
Book āThe 4 Walls of my Freedomāā Available at any major book seller.
Facebook Group - The caregivers living room
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Tags:
Caregiving
Donna Thompson
WeAreAllCaregivers
Dr. Yona Lunsky discusses state of mental health and developmental disability, how to notice mental health challenges, and different treatments.
In this episode, I welcome Dr. Yona Lunsky on to the podcast to talk about developmental disability (DD) and Mental Health. Dr. Yona Lunsky is Director of the Azriei Centre for Adult Neurodevelopmental Disabilities and Mental Health, and Director of the Health Care Access Research and Developmental Disabilities (H-CARDD) Program at CAMH. She is Professor and Developmental Disabilities Lead in the Department of Psychiatry at the University of Toronto and Adjunct Scientist at the Institute for Clinical Evaluative Sciences (ICES). In this episode we discuss Dr. Lunskyās journey into the field of mental health and developmental disability (DD), the state of mental health in the developmental disability community, how to notice mental health challenges, and the different treatment options available.
Below is a summary of some of the highlights from my conversation with Dr. Yona Lunsky. If you find this read interesting you can listen to the conversation in its entirety by clicking play on the player below, or searching āEmpowering Abilityā on your podcast player, such as, Apple Podcasts, Spotify, Google Play.
On the podcast, Yona shares that she has an older sister who has a DD, and she tells us about her family experience. She also shares what led her down her career path to support people with developmental disabilities experiencing mental health challenges. Take a listen to the podcast to hear more of Yonaās Journey.
Why should we be talking about health in the Developmental Disability (DD) community?
Paraphrasing from the podcast, Yona shares, āWhen we are healthy we get to enjoy our lives. When we are unhealthy it restricts us; work, where we can live, how much money it costs day-to-day [living expenses], and the activities we can do. We know people with DDs are less healthy, and have more health problems than people that donāt have DDs. There are lots of reasons why they [People with a DD] are less healthy. It isnāt necessarily the disability, the disability itself is not a sickness, but how they manage their health, and the barriers that come up for people with DDs can impact their health.ā
Mental Health in the DD community.
Yona shares, āThe likelihood of having a mental illness is much greater for a person with a DD than without. In the general population 1 in 5 people experience mental health challenges. Through H-CARDD we looked at the number of people under 65 [years of age] with a DD that were given a psychiatric diagnosis over a two year period, and found it was 2 in 5 people. These problems are more common for people with DD, and they are less likely to get the help that they need. People with a DD are less likely to understand their emotions, and [are less likely] to be able to put language to it. This puts them at a disadvantage.ā
What Does Dual Diagnosis Mean?
Having a DD and also having a mental health problem at the same time.
Diagnostic Overshaddowing
Yona explains, āIf someone with a DD presents with symptoms of depression, the clinician might but look at the person and say oh that is your disability, and miss that the depression is actually there, and it may go untreated.ā
Why might mental health be a larger challenge for people with a DD?
Yona explains, āWhat makes us feel healthy? Are we engaged in meaningful activities?, Do we have strong friendships?, Are we included?, Do we have opportunities to contribute?. People with DD are at a disadvantage here and this all impacts mental health. If the person themself canāt recognize there is a problem, then it becomes up to others to recognize there is a problem and we are worse at recognizing there is a problem when someone has a DD. By the time we do notice, it can be pretty late in the game, and this makes it even more difficult to help them.ā
I ask, so what are the antidotes to poor mental health?
Yona shares first there are things we can do to prevent mental health challenges:
- Things like bullying are clearly related to mental health, and we can give people skills so they know that to do in these situations.
- Building positive social relationships. These are reciprocal relationships and they are not stressful or demanding too much of you.
- Doing things that are meaningful and important for you.
Yona explains the importance of taking action on these prevention steps for young adults with a DD, āThere are many people who have mental health issues who are hospitalized in young adulthood. I donāt think this is a coincidence that this happens since when you finish school your activities, your friends and the people who know you really change. Not having anything to do during the day, and watching tv in the basement, losing friends, failing because there isnāt the right supports, all of this impacts your mental health.ā
How do we help someone that might be experiencing a mental health challenge?
Yona shares, āBe a detective and notice what has changed. What is different now than before and be able to provide examples in daily life. It is important to notice the change, and it is easier to treat when there is a small mental health issue emerging.ā
Yona promotes using the āHELPā model when examining an individualās mental health.
Yona explains the model on the podcast:
H - Health. First we need to look at what is going on in terms of health that could have changed. Is there a physical change? One thing that looks like depression is hypothyroidism, but this has nothing to do with depression. Constipation is one of the biggest issues leading to aggregation and discomfort for people with DD. And, this is often missed because the person might not be able to put the language to it.
E - Environment. What is going on in the environment? What are the supports and expectations right now? Are things stressful? Too demanding? Are people expecting too little? Is there a good match between her situation, and what she feels she is able to do? If the match is poor than address it.
L - Life Events. What has happened in the past that might be contributing to this issue? Bullying, ostracized, loss (experiencing grief), etc..
P - Psychiatric. Once health, environment, and life events are examined - could it be depression or anxiety? Treatment for these mental illnesses could include engaging in activity, seeing a counselor, medication, etc.
Families can use this model in order before going to get help from a medical provider, and families can use this model with their mental health professional.
Treatment with Medication:
Paraphrasing from the podcast Yona shares:
āThe research shows that the likelihood of being prescribed several medications at the same time is not small [for people with a DD]. These medications interact with each other, and cause other problems. These medications can help, but they can also harm.
In Ontario Canada, medications are paid for (antidepressants, etc) under the disability program. But, other services such as psychotherapy are not covered. The likelihood of fulfilling prescriptions are high, and the most commonly prescribed drug to people with DD are not for cholesterol, diabetes, or asthma, they are for psychiatric issues. The most commonly prescribed drug are antipsychotics. These are pretty heavy duty drugs which require a lot of monitoring.
If doctor prescribed medication to me, I would go on the computer and look at it, get a print out from the pharmacy, I would look at the side effects, and tell the doctor right away if I was noticing any of them. [However,] people with DD arenāt always able to notice the side effects, or to understand why they are taking the medication.ā
** Disclaimer: Do not just stop taking any medication that your doctor may have prescribed to you. Let this be a prompt to you to have a conversation with your doctor about your experience using your medication(s).
Letās Talk About Mental Health
Yonaās final message is, āIt is important to talk about it [mental health]. If we donāt talk about it we donāt solve anything by avoiding the problems. Mental health is just as important as any physical aspect of our health.ā
On the podcast we discuss some practical ways on how to start the conversation on mental health. Take a listen!
If you received value from reading this blog or listening to this podcast episode, consider sharing it with someone else you feel would benefit. Coming soon there will be a way for you, or your organization, to contribute to this work. Stay tuned for the details.
Love & Respect,
Eric Goll
Resources:
-
Talk to Dr. Yona Lunsky on Twitter @yonalunsky
-
Books beyond words
-
H-CARDD Health Tools for people with disabilities and caregivers
-
More on The HELP model
-
Dual diagnosis resources from CAMH
-
A Family guide to dual diagnosis
-
Video of Dr. Yona Lunsky discussing the HELP ideas
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Ted Kuntz shares his journey of personal transformation as he realized the who he wanted to be in the world with his son Joshua and with others.
Ted Kuntz is a gifted psychotherapist and the author of the best-selling books, Peace Begins With Me and 8 Weeks to A Better Relationship. Ted has a Master's Degree in Counseling Psychology and more than 25 years experience as a clinician and a consultant. Much of Tedās wisdom has come from his personal journey as the father of a child with severe disabilities. Ted's journey with his son Joshua taught him how to make peace with life and to take full advantage of the gifts and opportunities life offers.
Below is a summary of some of the highlights from my conversation with Ted. If you find this read interesting you can listen to the conversation in its entirety by clicking play on the player below, or searching āEmpowering Abilityā on your podcast player, such as, Apple Podcasts, Spotify, Google Play.
I was fortunate to meet Ted at Partnerās for Planningās Art of Resilience event this year, where I told Ted that I saw his talk the previous year at the Art of Belonging. It was one of the most inspiring talks that Iāve experienced, and Tedās stories went straight to my heart. When I met Ted I shared my gratitude for his talk and vulnerability. I also shared that I had purchased his Book āPeace Begins with Me.ā But embarrassingly, I hadnāt read it yet. I invited Ted to join me on the podcast, and I promised myself that I was going to read his book. We both kept our promise, and I am happy to bring you insights from Ted Kuntz!
Tedās Journey (so far):
Iāve paraphrased Tedās story from the podcast episode below and quoted some important conversations Ted shares.
āIt has been a very challenging journey, but very rich journey. It took me while to embrace the rich journey. At 5 months of age my son Joshua was damaged by a vaccine shot and developed an uncontrollable seizing disorder resulting in a neurological injury. This injury resulted in 24-hour care for the rest of his life and significant disabilities. In February 2017, Joshua passed away.ā
Josh transformed Ted as a father and human being in ways that Ted could have never imagined. I ask Ted on the podcast, āAre there moments or experiences of transformation that you can share with us?ā
Ted shares that there are two experiences that he has identified as the most transformative, the first was when Ted went to see a Physic:
Ted asked the physic: āWill my son live?ā
Physic: āHave no fear the son will outlive the father.ā
Ted: āIf my son will live, what will he be when he grows up?ā
Physic āYour son will be what he already is, and that is a teacher.ā
Ted didnāt understand how his son would be a teacher at first, but the words sat with him. What he came to realize is that Joshua was here to teach him about being a human being. He was here to teach acceptance, forgiveness, gratitude, and working through human challenges.
The second transformative experience that Ted shares on the podcast is his daily ritual with Joshua. When Ted pulled into the driveway after work he would see Joshua at the window saying, āHi Dadā. When Joshua wasnāt at the window to greet Ted, Ted knew that Joshua wasnāt having a good day. On this day, Ted pulled into the driveway and he stood there looking at his son in joy, and a voice inside of Ted's head asked him this question, āWhen your son looks through the glass at you what does he see?ā
Ted reflected on this powerful question, and Ted found the truth; Joshua sees a father who is angry, afraid, and a father who is rejecting his son. Ted committed that day to make peace with his situation, to accept it, to claim his joy, and to fall in love with the son he had. That was the day Tedās life began to change.
Insights:
Eric shares, āFor us to have these transformations we need to embrace these moments and let ourselves bring these questions and experiences into our consciousness to find our truth.ā
Ted shares, āThe transformation came out of an intense amount of suffering. Suffering can be one of the gateways to wisdom.ā
I ask, āHow do you shift out of suffering state to a state of joy?ā
Ted replies, āTake responsibility for emotional, physical, mental, and spiritual state of being. We often give away our power ā something else is responsible for our happiness, peace and joy. [For example,] Iāll be happy when Josh stops seizing. If I hold the story that my happiness is dependent on Joshuaās seizing stopping, then I couldnāt be happy. We need to claim ownership of our way of being in the world. I make me happy, I make me sad, I make me angry. Why would I make myself angry? It doesnāt serve me and the rest of humanity by staying in that [angry] state for a long period of time. I can release it any point.ā
āI believe when we are operating at our highest potential as human beings that we are living life as creative beings. That we are creating the next moment. Unfortunately, I spent the first 45 years of my life as a reactive being.ā
The Hidden Gifts of Disability
Ted Shares, āIt [disability] challenges us in a way that we are forced to respond. At first it moved me to those darker places, but Iāve since learned there is a healing that comes about when there is an acceptance. Iāve chosen to live in peace and joy, because my son deserved that. It changed me as a father, a husband, a brother, a son. It made me a better person.ā
Ted shares the story of Joshuaās grade 7 teacher:
Paraphrasing from the podcast Ted shares, āWhen Joshua was entering grade 7 there were 2 male teachers, who were athletes, selecting students for classes for the upcoming year. They decided to do a coin toss for who would pick first. The teacher who won the coin toss looked at the list of students and selected Joshua as the first pick. The other teacher asked, āWhy Josh? He requires a wheel chair, has an uncontrolled seizure disorder, he has many other needs.ā The other teacher replies that he notices how the kids excitedly greeted Joshua in the morning, how they gently took off his coat, how the other kids altered the rules of the game so Joshua could play at recess, how the children where there laying on the mat with Joshua as he recovers from seizure. If Joshua is in my class it will make it a kinder and gentler place for everyone.ā
This teacher helped Ted see Joshās gifts. Ted was now able to look at Josh with a different set of eyes.
Ted shares, āIs the glass half full or half empty? It is both. Do I look at the full parts, or do I look at the empty parts? We have been socialized to believe that success looks a particular way. What people like Sarah [my sister] and Joshua do is that they remind us that there are other qualities to aspire to. There are things that I wasnāt going to learn from a book, I needed to be in relationship with a person more vulnerable that myself. This is a challenging journey. Letās not just look at the parts that are difficult, lets also look at the gifts that can be realized out of this journey. Letās not lose that opportunity to experience some significant transformation as a result of this life experience.ā
To embrace this mindset that everybody is a gift to us, Ted plays a game with himself. He asks himself, āWho is going to show up today?ā, and āWhat gift do they have for me?ā, āWhat gift do I have for them?ā. It forces him to appreciate everyone he interacts with.
In this episode, Ted also shares the native story of two wolves - the negative and positive wolves fighting our hearts, a tool to find more joy in our lives, and we discuss David Hawkings map of consciousness. Listen to the podcast for more on this!
Ted leaves us with this message to consider:
āYour way of being is actually more important than what you do. We would be better off if we made 'To Be:' lists every day, rather than 'To Do:' lists. Be gentle and kind to ourselves. We are on a journey of development. One of the things that I believe is that we donāt make mistakes, we actually make the best decision available to us at that moment with the information, skills, and knowledge that we have.ā
I am grateful for the stories, insights and rich conversation Ted gave us.
If you received value from reading this blog or listening to this podcast episode, consider sharing it with someone else you feel would benefit. Coming soon there will be a way for you, or your organization, to contribute to this work. Stay tuned for the details.
Love & Respect,
Eric Goll
Resources:
Book: Peace Begins With Me
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Learn how people with disabilities have lived, how they are living, and what we have learned from renowned consultant Michael Kendrick.
[4-minute read, 65-minute listen]
It is my pleasure to bring to you episode #047 with well-known international consultant in Human Services, Michael Kendrick PhD. Michael is involved in consulting, education and evaluative work with many governments, private agencies, advocacy groups, community organizations, universities and colleges across the globe. His work has involved training, evaluations, strategic planning, critical problem solving and confidential advice in the areas of mental health, disability and aging with an emphasis on persons requiring long term support. Michael has also developed and delivered the Optimal Individual Service Design (OISD) course that is the most in-depth leadership level educational program available internationally at present. [Iāve taken Michaelās OISD course, and I personally recommend it.]
In this episode of the Empowering Ability podcast Michael Kendrick answers the questions of; How have people with disabilities lived?, How are they living today?, and, What have we learned? Michael also shares how we need to have a Mindshift to higher expectations and normalization for people disabilities, and also how we need to have enlightened attentiveness when with people.
This blog paraphrases segments of my conversation with Michael, if you find this read interesting you can listen to the conversation in its entirety by clicking play on the player below or searching āEmpowering Abilityā on your podcast player, such as, iTunes, Spotify, Google Play, etc..
How have people with disabilities lived? and, How are they living today?
Paraphrasing from the podcast Michael shares:
People [with disabilities] have lived under different circumstances depending on what point in history, and in what culture. It is clear that people with disabilities have been treated as inferior or of less value. They have less capacity than their brothers or sisters and so on, and large numbers of people see people with disabilities as negative. This has led to people with disabilities being treated as less human. [For example] When getting medical procedures people [with disabilities] didnāt get the same anesthetic because they were different than everyone else. Also, there are people aborting people with disabilities ā this is a very strong statement that they are unwanted and seen as a burden.
They [people with disabilities] live in a world of assumptions created by other people, which has big impacts on what kind of life they get to live. Everyone is subject to assumptions about them. There are two kinds assumptions; assumptions that liberate them and assumptions that hold them back. There was a time when it was believed people with disabilities couldnāt have regular jobs in the community, and now there are jurisdictions where 3 out of 4 people with disabilities have jobs in community. There was a time it was thought people with disabilities couldnāt be in regular classrooms. We see this now. In these examples a 'mindshift' has taken place. When we change our mind, we change our world. These mindsets have shifted in the last 2.5 generations, mostly in western societies, but this is moving into other societies.
This shift started in Sweden and Denmark with the Normalization principal; simply [the idea] where devalued people should be treated like everyone else. This was later translated into the theory of social role valorization. Life will get better for people with disabilities when we pay attention to what is going on in our minds and we shift our perceptions.
There is a belief that people would be better off segregated. If they are not with us, then they are somewhere else. They would be happier with their own kind, their own kind is other disabled people. Segregated sport, housing, schooling, work ā there is segregated everything. We all need support to be successful, especially in new environments and social contexts.
It is a myth that people with disabilities canāt succeed in inclusive settings.
What have we learned?
We have been too conservative and cautious about the true potentials for people with disabilities. The pessimism [of others] is the problem, not the people with disabilities.
āIf you treat an individual as he is, he will remain how he is. But if you treat him as if he were what he ought to be and could be, he will become what he ought to be and could be.ā
- JOHANN WOLFGANG VON GOETHE
How do we hold higher expectations for people with disabilities?
If something benefits the rest of the world, it will benefit people with disabilities as well.
The application of this is called Culturally Valued Analogue (CVA). Simply, provide the same options that the rest of us have available to us. We should always do the normal thing and make it available to people with disabilities; the same activities and pastimes.
Include people with disabilities in new experiences and see what they might enjoy. Each should have the opportunity to build an interesting life for themselves. This is why the individualized option makes sense for people. This is why it is regressive to give people the same options [for example, group homes].
If people havenāt had opportunities, create new opportunities for that person. It is never too late. If people have become deprived, it is āovercomableā. The caution is to do it at the pace of the individual. An exploratory journey of life tasting. Even if you have been held back, you can make up for it.
Capacity for Decision Making
Some people think disability means they have no capacity at all. A truer appraisal of all of us is that we all lack capacities of one kind or another to some degree. People with disabilities certainly have capacity. They can make decisions on their own behalf, and is it better that they do that, because they will learn how to make good decisions and they will experience the consequences of the decisions that didnāt turn out to be so good - like everyone else. That is how you learn about decision making, is making decisions and practicing decision making. You can safeguard people and their vulnerabilities with decision making. They can pick their own supporters to help them with decisions in areas they feel they need support in making decisions.
People with disabilities rebel against not being able to be decision makers because they feel things are being done to them or on them, rather than with them. People are also easier to get along with when people [they] are decision makers because they donāt feel threatened, and that people [others] are there in a supportive way. Often behaviors will disappear.
There might be times were people with disabilities might not make good decisions. It would be neglectful not to support people, even when they donāt ask for it. The person might be unwilling to take support, but there are times where people can intervene, but it must be done respectfully. If people are concerned about us, they ought to be able to share their concerns about our decisions. You are not giving up the ability to influence, but you are giving up the control of the individual.
On the podcast, Michael discusses his views on circles of support, and how they can benefit an individual.
Why is investment in group homes an outdated idea?
In summary:
- It is based on the assumption that people with disabilities should live together. We [everyone else] chose to live with people we are compatible with.
- It is forced shared living.
- It creates the idea that it is the only option for people.
- There are much better options. Individualized one person at a time is much better because it gives you much more choice.
Many jurisdictions have a freeze on the growth of segregated living.
Michaelās Challenge To Everyone:
Give people with disabilities quality attention when you are with them. If you pay attention to people a lot of things about people and their lives will become more clear to you. Pay attention. Let us get instructed by them, simply by knowing the person and getting to know them better. Be really attentive to learning who they are and what their life is like. We donāt know where this will take us, but this will raise our consciousness and change us for the better. One great shortcoming we all have is that we donāt take people with disabilities seriously enough. I think the antidote to that is āenlightened attentivenessā to the person and let it go where it goes. It is the most deeply respectful thing we can do, is to pay attention to a human being.
On the podcast, I give my perspective on how we can practice enlightened attentiveness and I share a story of my sister (Sarah) which is a good example of my 'mindshift' of doing WITH Sarah, instead of FOR Sarah. If you are interested in my insights take a listen to the podcast.
A big thank you to Michael Kendrick for coming on the podcast and sharing his wisdom. If you received value from reading this blog or listening to this podcast episode I encourage you to share it with someone else you feel would benefit.
Love & Respect,
Eric Goll
Resources:
Video Insights from Michael Kendrick: Click here for youtube videos
Brian shares his story of multiple health challenges and family adversities, and his insights about how we can re-write our story and take control of our lives.
In this episode, I have an engaging conversation with life coach, Brian Raymond King. Throughout Brianās life heās been a student of adversity as he experienced multiple health diagnosis including; cancer, ADHD and MS ā as well as going through a divorce, and being a single parent to three children with ADHD. Brian shares his story and his insights about how we can re-write our story and take control of our lives.
On the podcast Brian shares:
āItās a matter of doing what you can with what youāve got. In situations like mine, you donāt just give up on life and let it pass you by because you canāt do everything each day that you can do on your best day. Some people use their best day as their standard, but that is ridiculous because life ebbs and flows. Depending on where Iām at that day, I think about what can do and I show up and do 100% at it.ā
How have you bounced back from each challenge in your life?
Paraphrasing from the podcast, Brain Shares:
āWith each new diagnosis there is that oh crud moment. This is usually brief. But, grumping and groaning will not change the situation. Then I shift to what do I need to know? What resources are available? What books do I need to read so I can manage this? At some point being resourceful just stuck.ā
What tools do we have in our toolkit to be resilient?
Paraphrasing from the podcast, Brain Shares:
āFirst off, there is noise that makes it difficult to use the tools [we have]. One of the most annoying offenders is the āshouldsā. It [life] should be this way, or it should be that way. Once we stop āshouldāingā all over ourselves, we can take the first step toward a solution. Maybe you donāt know what the solution is yet, but you can start problem solving.ā
What about when the problem seems so bad, or too much to handle?
Brian asks his coaching clients, āDo you honestly believe that? Or, is that honestly true?ā
Brian helps his clients think through if they want to be a victim of the situation or if they want to be resourceful and take charge by asking questions like:
āDo you want to be helpless or do you want to be in charge? What can you be in charge of right now? You can be in charge of your thoughts.ā
In my coaching practice I often ask clients, āWhat assumption are you making?ā This is a powerful question to help us realize the stories we are creating based on incomplete information. (Also, our assumptions tend to lean toward being negative.)
Mindset vs Skillsets:
Paraphrasing from the podcast, Brain Shares:
āYou can have the best tools in the world [skillsets], but if you donāt believe in yourself [mindsets] you might not even want to use those tools [skillsets].
Brian believes we must first develop or mindsets, which is comprised of our belief systems to get the most from our skillsets.
I ask Brian, How do we develop our mindsets and beliefs?
Brian shares, āStudying biographies. Donāt just listen to what they did, it is important to look at the decisions that they made, and the beliefs they hold. It is their beliefs and thoughts that led to their results. Try adapting to that belief for just a day - I am going to act as though this belief is true, and I am going to see the world through this lens. For example, you are a much different person if you believe that people are good at heart, vs people are just out there to screw you over. Things are first created in the mind, then in the real world.ā
Who is one of your most influential mentors?
Brian shares, āVictor Frankl, who wrote 'Manās Search for Meaning'. You can choose your attitude no matter your circumstances, and each person has the internal power to find inner meaning in any situation. He gave me perspective on how much I was self-pitying. I decided how I was going to face how I was going to feel and how I was going to choose to think.ā
On the podcast, Brian discusses the concept of Hacking your Resiliency. Take a listen to the podcast to hear these valuable insights.
Brian leaves us with a challenge to consider, āWhenever a problem shows up one question you can ask yourself is, āWhatās good about this?ā When you ask this question you immediately begin seeing what opportunities are available to you because that problem exists.
A big thank you to Brian for joining me on the podcast and sharing his insights! You can learn how to connect with Brian in the resources section below.
Love & Respect,
Eric Goll
Resources:
Brian's Website: Mindsetbeforeskillset.com
Connect with Brian on Facebook
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Guest Lynne Seagle shares how her organizaton was oppressing people with disabilities, and what they did about it.
This weekās guest is Lynne Seagle, CEO of Hope House Foundation, a not-for-profit organization started in 1964 by family members whom had sons and daughters with developmental disabilities in Virginia, USA. These families wanted something other than an institutional living for their loved ones, so they started the first group home in the state of Virginia. Hope house grew to run 13 group homes by the 1980ās, when they learned that the people living there actually didnāt want to live in group homes, and they did something about it. Today, Hope House supports 125 people that live in their own home, with a staff of about 260 people, half of those being part-time.
Lynne has been with Hope House for 38 years. She wants to create a better world for people with disabilities that are isolated or not valued, and she said, āthere is no stopping point ā it is a long journeyā.
Finding Out People Didnāt want to Live in Group Homes
Paraphrasing from the podcast Lynne shares that, āā¦finding out people didnāt want to live in group homes started with a survey. The survey asked the question, āDoes everyone like where they are living?ā Everyone said yes. It was odd to ask 120 some folks a personal question and get the same answer. We then re-worded the question to, āHow do you want to live?ā. And, the flood gates opened. People answered 1 of 3 ways, from most dominant to least; 1) I want a home of my own, 2) people wanted a job (most people were in day programs or workshops), 3) friendship and romance.
Lynne continues, āWe [Hope House] had defined excellence as meeting all the rules ā paperwork was clean, no employee grievances, well-kept homes, low staff turnover. We were looked at as the model in Virginia. BUT, when we gathered these themes [truths] we reviewed our program plans and not one program plan addressed these needs of people. This was a daunting realization for our organization.ā
People Were Being Oppressed in Group Homes
Lynne Shares, āWe started meeting people individually and we started realizing we didnāt know them. When you support someone in a group you only know them in the context of the group, not really an individual. It was quite astonishing to us. After we closed the first group home we started to study oppression (groups that have been oppressed); American Indians, women, people of color, the LGBT community. The book āWalking with the Windā by John Lewis was influential for us. We noticed all oppression looks the same, regardless of the group ā keeping people poor, limitation of choice, very few freedoms.ā
Hope House had discovered this truth that they were oppressing the very people they were there to serve, and they made a decision to no longer run group homes. The last of the 13 group homes closed 22 years ago, and everyone they support now has a home of their own.
Lynne shares, ā[Hope House is] proud of this, but Iām surprised that this is still something to talk about as something new or something that should be considered in 2018.ā
It was just the right thing to do.
At the time there were no examples on how to do this, and funding was set up in a group model. This was the hard road to choose. Lynne shares, what kept them moving forward is asking the question, āWhy do people in disabilities need to live in groups when I donāt have to? We looked at the humanity of it, not the money, or the skill of the person.ā
We are Responsible for the Oppression of People with Disabilities.
Paraphrasing from the podcast, Lynne shares, āWhat business looks exactly as it did in the 1970ās and has consistent oppression? When you look at social justice change in almost every case the people being led it were the people being suppressed. When you look at the nature of developmental disability, the people being oppressed need our support to lead a revolution, and we would be revolting against ourselves. We need to step up! Do we want neighborhoods that are being inclusive or not? There is a huge group that is being left out.ā
Insight from Lynne: āWe need to change, not people with disabilities that need to change.ā
How Do We Bring People Out of Oppression?
Lynne shares, āWhat we did is gave everyone a home of their own. No one wanted a roommate, except for people that were romantically involved. This gave people a lot of control. We chronically underestimate people with disabilities. When given the opportunity a lot of people with disabilities flew. After that, a focus on employment. Economic power opens up more choice. Then we focused on connection and belonging. Not having a service life, but having your life.
Reconciling our Beliefs
Paraphrasing from the podcast Lynne Shares, āWe had a prejudice or bigotry. When you value intellect and beauty ā¦. people with disabilities donāt fit those values. When you lift that up you realize that you donāt believe that people with disabilities are your equal. We had to come to terms with that. That was internal work that everyone of us had to do. We believed the level of disability related to how much you could direct your life. We had to get rid of that stereotype. We support people that are non-verbal, that use a variety of devices [to live in their own home]. We now have a belief to the core that every single human being can direct their own life. When people are in their own homes they are looked at differently. The universe has its own way, without us controlling us. The natural rhythms of life start to happen then people have their own homes.ā
Lynne shares the story of Willy and how he proved them wrong in his capability to direct his own life. Hope House went from providing $160,000/ year of support to $10,000 per year in support as Willy got his own place and started to flourish.
We are Oppressing People with Disabilities
Upon my reflections, we are oppressing people that are living in grouped settings, but people donāt have to be living in an institution or group home to be oppressed. People with disabilities are being oppressed by their families, their friends, their supporters and by society at large. Lynne shares with us the common signs of oppression; keeping people poor, limitation of choice, very few freedoms.
When I examine my own life, Iāve been guilty of keeping people oppressed. For example, Iāve played a part in keeping my sister (who has a disability) poor by not getting her access to her bank account and helping her learn her economic power, by limiting her choice or taking decision making power away from her, and by not acting to get her out of isolation at my parents home.
There are very simple steps Iām taking to empower my sister, like getting her a bank card and assisting her with online banking, by standing beside her to play a supportive role in making decisions, and creating and upholding a big bold vision for her to move out of my parentsā home and into a home of her own.
Once I became conscious to my beliefs, and how I was being oppressive to others I had to make a choice. I could choose to continue to suppress these truths and continue on with the status quo, or I could roll up my sleeves and do the hard work of examining my beliefs and change my beliefs to put people with disabilities on equal footing and to support them in breaking free of oppression. I chose the later, which will you choose?
Lynne leaves us with this message, āIt is all of our responsibilities to work on ourselves around the issue of equality, regardless of disability, and to take action for those left on the sidelines."
Love & Respect,
Eric Goll
Resources:
Hope House Website: https://www.hope-house.org/
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Guest Joscelyn Duffy shares her strategies of resiliency through her recovery from a life threatening illness, & we discuss how to be a compassionate supporter.
Joscelyn Duffy is a communication and contribution strategist who travels the world serving leaders in the development of their messages, model and methodologies. At the young age of 26, Joscelyn went from high potential employee in the financial sector and marathon runner to being bed ridden for 2 years with a life threatening case of lupus. During these two years Joscelyn slowly recovered but was only left with 2 to 3 good hours per day. Joscelyn shares, āThis was a shock and massive unexpected shift in my life.ā Joscelyn found that she had to make the best of her 2 to 3 hours, especially compared to when she had 16. She was left asking herself, āHow do I push through with mental fortitude?ā
Paraphrasing from the podcast Joscelyn shares, āWhen my illness happened I wanted to hold onto the way life was and went right back to work from bed.ā She found that she couldnāt do what she was once able to do. She said to herself, āIf I am listening to life Iāve got to get over what my head is telling me, and there is something else I could be doing.ā
This new thinking led to acceptance of her current situation, and a focus on what mattered most to her ā being active with other people, and engaging in her passions; reading, writing, and painting. There was a lot of healing that came through writing a book on her story titled, āUnshakable to the Core.ā This led to Joscelynās current career as a ghost writer, helping other people to have their voice heard.
Joscelynās Insights on Resiliency:
For Joscelyn, it was simple; compassion and small actions.
- Simply have compassion for yourself.
- Small action; It is going to take small steps to get to where you want to go. When Joscelyn was learning where to walk, she had to start with the first couple of steps. Every step is like going up a staircase toward your ultimate goal.
How can we support someone that is experiencing a challenge?
āIf you want to make god laugh, you tell him your plans.ā ā Woody Allen.
Paraphrasing from the podcast Joscelyn Shares, āLife rarely ever goes the way we plan it. We take ourselves way to seriously. We can take a light-heart into these situations as a supporter. Try to encourage flexibility. Especially when you are working with a person that has to do something a certain way, ask them to just try it once.ā
Empathy Vs. Compassion
Something I have personally been struggling with is being empathetic of people I am supporting, rather than being compassionate.
So, why is this a problem?
Being empathetic is feeling and taking on what someone else is feeling or walking in their shoes. Or, as Joscelyn defines it, feeling the pain of another.
Vs
Being compassionate is understanding what someone is going through, but not taking on their emotions. Or as Joscelyn defines it, wanting help to alleviate the pain and suffering of others.
The challenge with being empathetic is that our ability to be helpful is at risk of being diminished by taking on the emotions of others, where as being compassionate allows us to stay grounded in our own perspective and to support the person to move forward.
The Compassionate Supporter is a More Effective, and Happier Supporter.
In 2016, Michael Poulin and associates at State University of New York at Buffalo conducted a study to see the impacts of taking two different perspectives as a supporter; a helping imagine-self perspective taking (ISPT) (i.e. walking in their shoes perspective), and an imagine-other perspective taking (IOPT) (i.e. seeing through their eyes perspective).
The study found that ISPT resulted in relative threat, whereas IOPT resulted in marginally greater relative challenge. This effect was mediated by increased perceived demands of the situation. Moreover, self-reported distress was only associated with threat during ISPT, but not during IOPT.
Source: https://www.sciencedirect.com/science/article/pii/S0022103116303961?via=ihub
So, what does this mean?
When we walk in another's shoes as a supporter, we take on threat and our stress levels increase. When we look through the other personās eyes there is only a small impact on us - less stress. This study tells us that we can be a more effective supporter by being compassionate vs empathetic.
Putting Compassion into Practice:
Putting compassion into practice is something I am working to develop myself. Joscelyn offered a practical model, āThe 4 Pās of Compassionā, to understand compassion that I found very insightful, as well as a couple of tools we can use to practice being compassionate.
"The 4 P's of Compassion"
Presence: Being there fully the moment with the person
Perspective taking: Seeing the world through their eyes, without fully stepping into their shoes
Patience: Being patient with yourself and those you serve.
Progress: support for forward progress ā the small steps also count.
Tools to Practice Compassion:
Being compassionate is about perspective taking. As stated in Michael Poulinās study, it is more beneficial to try and see things through another personās eyes, rather than trying to walk their shoes. When we look through anotherās eyes and stay grounded in our own two shoes as the supporter we have decreased stress, and increased health and wellbeing.
We arenāt helping others when we are taking on what they have.
Sounds great! How do we do this?
Joscelyn shares, āYou can think about it like watching a movie. When watch a movie you might laugh, smile, or cry, but when the movie is over you havenāt taken that on (i.e. those emotions donāt continue to impact you). You have learned from it, you are better for it because now you see a different perspective, but you donāt internalize it. It is a dance.ā
Joscelyn is also a Reiki practitioner, and she had to learn how to stay in own her own strength and energy. She shares a strategy that she uses, āI see my favorite colour around me (picture being in a bubble of colour), and positive energy can come in, and the negative energy canāt penetrate this shield. This allows us to stay in our own energy while supporting another."
On the podcast, Joscelyn also shares how to find your own voice, which is something Joscelyn has a great deal of experience supporting others to do as a ghost writer.
A big thank you to Joscelyn for sharing her story and insights on resiliency and compassion!
Love & Respect,
Eric Goll
Resources:
Joscelynās Website: Joscelynduffy.com
Joscelynās Books: Click Here
Joscelynās Blog: Click Here
Read more on perspective taking: Click Here
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Guest Nick Maisey, founder of Befriend, shares his insights on building relationships and creating more inclusive cultures.
Nick is an Occupational Therapist, social entrepreneur and community builder from Perth, Australia. With the support of the Westpac Bicentennial Foundation, Nick completed a Social Change Fellowship to undertake an international information exchange, to enhance his learning of innovative, effective approaches to fostering the development of relationships and community connections.
Nick spends a lot of his time reflecting on the importance of relationships, and thinking about what we can do together to build more connected societies.
This curiosity is what led Nick to start the organization, Befriend. The inspiration to start Befriend came when Nick was studying Occupational Therapy. The story goes, Nick received an email from Tim, that roughly read, āI am a 23-year-old guy, I like watching movies, going to the beach, and learning how to surf. I donāt have any friends, I am wondering if there is anyone interested in getting to know me?ā
Nick shares, āThere was something simple and honest about his email. I met him (Tim)ā¦ he has taught me a lot about inclusion, and what it is like to live a meaningful life connected to others. He didnāt have a single person that he would call a friend. It struck me that we live amongst so many people in close proximity of each other, but there are so many people that feel alone.ā
This started a lot of conversations between Nick and his friends, and in 2010 Befriend was started with the intention to foster a more inclusive and connected society.
Nick Shares, āThe experience of loneliness for many of us comes from the feeling of being excluded. With Befriend we foster the development of new relationships, and a more inclusive culture.ā
How is Befriend doing this?
Paraphrasing from the podcast Nick shares, āIt is about simplicity. We take a community building approach by working with local people that are interested in building community, and we work with them to bring people together. We partner with organizations and networks where people are vulnerable, and we facilitate introductions and connections. In partnership with community organizations we help to get the word out about these gatherings, and build bridges to vulnerable people. In Perth, we have about 50 social gatherings per month across the city.
Befriend is kind of like a Meet up, which is platform for any individual that can start up a group around an interest, but with an intentional value of inclusion. Befriend focuses on teaching gathering hosts on how to cultivate inclusive cultures.
Reducing Loneliness and Isolation in Community:
In 2017, Nick was awarded a Social Change Fellowship from Westpac Bankās Bicentennial Foundation to go on a self-development experience to further his social change venture. This was essentially a scholarship for a 3-month international self-directed learning tour that took Nick around the world and back, including stops in; Australia, New Zealand, United States, Canada, Scotland, England, and Denmark.
On Nickās journey he visited 58 groups to explore his curiosity in these two key areas:
-
What are effective approaches for fostering the development of natural relationships for people who have had a lived experience of being isolated, disconnected, or devalued within their community?
-
What are approaches for fostering more inclusive behaviours, attitudes and values within communities?
On the podcast, Nick shares the stories of his visits to a few of these 58 groups, and what he learned with them. Nick and I also discuss the traits we see in people excelling in the ācommunity builderā role. Take a listen to the podcast to hear these insights.
The Space In-between:
Nick came to be very interested in the space in between his two key questions: that is, what are people doing to build natural relationships for devalued people, and to foster more inclusive cultures? A theme started to emerge ā valued contributions. Nick noticed that when people devalued by their community made a contribution that they were intrinsically motivated to give they started to build natural relationships, and more inclusive cultures emerged. Some examples in practice where Nick observed this were volunteer time banking initiatives, skill exchanges, community dinners, interfaith initiatives (sharing knowledge and beliefs about god across religions to enrich collective sense of faith), and neighbourhood development projects.
Nick leaves us with this call to action to build relationships and create more inclusive cultures:
āSpend time thinking about, not what we need, or others around us need. But, how can we be helpful? And, how can others around us be people be helpful? Especially (use this thinking for) the people we think of living a life of needs.ā
Love & Respect,
Eric Goll
Resources:
Nick's Blog: Click Here
Befriend website: Click Here
Befriend Facebook page: Click Here
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Welcome to Episode #042 of the Empowering Ability Podcast/ Blog. Todayās episode is about āUnderstanding the Sibling Experience, with Helen Ries.ā Before we get into the content of this episode, first some housekeeping because it has been awhile since you have heard from me.
Almost 4 months in fact.
In December 2017, I shared with you that the podcast would be taking a break for a couple of months so that I could develop new content and complete a few projects. However, life got busier than expected; with helping to run my familyās business, finishing the construction of my new house, supporting my sister to move out of my parentās house, running my coaching practice for leaders and families working to create incredible ordinary lives for people with disabilities, and working on the adult sibling research we are going to share with you today.
Something had to give, and it was the podcast - even though I love podcasting. To give you an idea, publishing a 1- hour episode is about 10 hours of work, as I do all the recording, editing, writing, graphics, and publishing myself. So, moving forward I will be releasing an episode every 2 weeks, which is a much more manageable pace than weekly, also considering this podcast is currently free. I am a considering a āpay what you can modelā for those of you that are getting a ton of value from this podcast and wish to contribute to the production of the podcasts and the costs associated with it. I want this information to remain open and widely available to everyone, and this type of model will enable that. With all of that said, I have still been recording content over the last 4 months and I have some incredible conversations that I will be bringing to you over the next couple of months.
Iād love to hear from some of you to learn what has really resonated with you over the first 42 episodes. This will help me as I craft new content to bring you more of what you find valuable. Also, send me the names of guests you would love to hear on the podcast.
You can send me an email at eric@ericgoll.com.
Okay, enough housekeeping.
Today, my guest today is Helen Ries. Helen is a sibling, who supports her brother Paul, and they live together in Ottawa, Ontario. Helen also joined me on episode 9, which you can listen to here, where she talks in depth about her experience as a sibling and shares her insights. Helen is also an evaluator and consultant in the not-for-profit sector with an interest in social justice and poverty reduction, you can check out her work on her website.
Helen and I, discuss the research we have been doing to understand the life experience of adult siblings. The purpose of this research is to understand siblings so that we can better support adult siblings with resources, some of which we intend to create.
There were actually three of us completing this research, the third person being Becky Rossi. Becky just became the mother to her 3rd child, and wasnāt able to join us on the podcast ā but here is a brief overview of our stories:
Helenās Story:
All her life Helen knew that one day she would be responsible for her brotherās care. When that day arrived, it was early, unexpected and fast. The shock of suddenly becoming a caregiver still runs through her. There are moments when she remembers a time when she could go away for the weekend without planning it or when she didnāt have the nag of constant worry. It has been so far a difficult journey, but she is very proud of how her brother has thrived with her care and how their relationship has grown.
Beckyās Story:
Becky has spent the last seven years championing broad systems change through building community-based, non-traditional solutions to issues of isolation and vulnerability, both through her long-time work with P4P and as the sibling of an adult brother with Aspergerās Syndrome. Becky has a close relationship with her brother and ā together with her sister and parents ā they navigate the challenges and opportunities of creating a meaningful life, secure future and strong family.
Ericās Story:
Sitting from his work desk Eric received a call from his distressed mother exclaiming "I just can't do it anymore". She was referring to caring for his sister, with a DD, 31 years old at the time. Eric had a decision to make ā continue to stay armās length from his family, or jump in and play the role of a loving brother and loving son that he knew he could be. This started Eric's journey in supporting families with a loved one with a DD (including his own), through personal coaching and educating.
So, this is a big lead up to what we have learned, here it isā¦.
The Sibling Life Journey
We looked at the common themes in the life of a sibling over the stages of a siblingās life. These themes might not apply to every siblingās life, but these are our observations from conversation with many adult siblings, and they line up well with the data we collected in a survey with over 360 adult sibling respondents.
0 years-18 years old: At a young age we get an understanding of disability, and we notice differences between ourselves and our sibling. Our parents are taking our brother or sister to many appointments and are often providing much more care to our brother or sister than they are for us. We are often asked to help out, and many of us just jump in wanting to help. This leads to siblings maturing faster than normal and developing a strong sense for caring for others at an early age. We also become our brother or sisterās protector. No one is going to mess with our brother or sister at school, or out in public without hearing about it from us. The maturity, carer, and protector are traits and values that we often carry with us throughout our lives.
18 years ā 29 years old: At 18 typically siblings move out and go through a big growth and exploration phase. We get an advanced education, or head out into the working world, we try many jobs to see what we like, we travel. And our brother or sister, from age 21 on, is often living at our parentsā home with little to do and is actually in decline in terms of growth. During this time in a siblingās life they will often describe having a feeling of guilt, as they are experiencing what life has to offer, and their brother or sister isnāt having the same opportunity. Siblings want their brother or sister to have the same life opportunities, but they donāt know how to support them to do so.
30 years ā 39 years old: This stage of a siblingās life is typically focused on career building and starting a family of their own. These things take a lot of energy and can mean a little less connection with our brother or sister and parents. This feeling of guilt can continue. We want better for our brother or sister but not really knowing how to help and use our influence. Siblings are often pushed out of the conversation my parents about their brother or sister because parents donāt want that āburdenā to be passed onto the other sibling.
40 years ā 49 years old: Siblings have described having a āloomingā feeling in this life stage. More often than not, their brother or sister with a disability is still living with their parents, and the parentās health is starting to decline due to age. Siblings can see this impending crisis coming, whether it is conscious or unconscious - it is keeping them up at night. What is going to happen when my parents canāt support my brother and sister? It is on me.
50+ years old: The parents decline to a point where they cannot provide care for their child with a disability, and someone else needs to take over that role. Many siblings step up to fill the role, all while dealing with their parents decline, their career, and their family. This can be a very challenging time period in a siblingās life.
The Survey Findings:
There are 7 key findings that we share in the āUnderstanding the Sibling Experienceā report, here is a small glimpse into a couple of the findings that Helen and I discuss on the podcast. I recommend you check out the report, hosted by Partners For Planning (P4P), if you are interested in reading about all of the findings.
The Findings:
Where are our brothers and sisters with a disability living? Well it turns out that 85.6% of our brothers and sisters aged 20 to 29 years old are living with their parents. In comparison, the Canadian national average is 34.7% for people aged 20-29 years old. The percentage of people with disabilities living with their parents stays high well into the 40-49 year old age bracket, at 58.5%.
What are the current challenges identified by siblings? Siblings identified the mental health of their brother or sister and the mental health of their parents as the most frequent challenge they face. Followed by hosing options for their brother or sister, managing relationships, and emotional supports for themselves.
If you are interested in the other 5 findings, check out the report here.
Our Recommendations:
In our report, we outline 8 recommendations for siblings, families, organizations, and government to consider.
These recommendations include:
- A deeper study of siblings
- Adult siblings connect with other adult siblings to share their experiences
- Development of resources and tools for adult siblings
- Support for mental health of our families
- Innovative housing solutions
- Poverty reduction
- Siblings are involved in the family planning discussions
- Organizations reach out to siblings and support them.
I encourage you to read our report to learn more about these recommendations in depth, click here.
The Sibling Collaborative:
So, what is next for us? (Helen, Becky, and I)
We have done a lot of thinking about what we have learned about siblings and we have created a new project, called āThe Sibling Collaborativeā to support siblings needs.
The purpose of the Sibling Collaborative is to āConnect Siblings and Strengthen Familiesā.
The Sibling Collaborative has a core set of values that guides our work:
Realizing Change with Compassion: We take action with the critical input and consideration of our brothers and sisters with a DD and our families.
Mutual Respect: We give people agency over their own lives, with consideration for all those involved.
Collective Solutions: We find a way forward by learning, working and co-creating together.
Unlocking Potential: We hold a big and bold vision for our brothers and sisters as well as our families. Our intrinsic creativity and resourcefulness knows no limit.
For this collaborative to be a collaborative we need others to collaborate with! We would love other siblings, self-advocates, family members, and organizations that share these values to partner with us on this journey. You can join the sibling collective mailing list here, to be updated on the journey as it unfolds.
Helen leaves us with a quote from friend to all siblings, Don Meyer, āIf you want to invest in the long-term well-being of people with developmental disabilities, you need to invest in their brothers and sisters.ā
Thank you for reading to today's blog! If you liked this episode, and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.
Love & Respect,
Eric Goll
Resources:
The Sibling Collaborative Facebook Page: Click Here: Sibling Network
Join The Sibling Collaborative Mailing List: Click Here
Email: info@siblingcollaborative.org
Understanding the Sibling Experience Report: Click Here
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Tags:
Helen Ries
Siblings
Becky Rossi
Sibling Life Journey
sibling care-giving
Sibling report
The Sibling Collaborative
Al Condeluci provides us with a 4-stage framework to build social capital (meaningful relationships) for people with disabilities. Keenan Wellar also joins us to share the experience of putting the framework into action with his team at LiveWorkPlay. This podcast was created from a segment in Episode 006, so it might be the second listen for you long time listeners, but it is so good that it is worth another listen!
The approach that Al Condeluci shares is a 180-degree approach from looking at a personās deficits. āOh, Sarah canāt do thatā¦. She would never be able to (fill in the blank).ā This approach zooms out and looks at the much bigger view (macro view as Al calls it) of a personās life.
In an ongoing study, by Harvard University, it was revealed that relationships are the biggest contributor to our happiness:
āClose relationships, more than money or fame, are what keep people happy throughout their lives, the study revealed. Those ties protect people from lifeās discontents, help to delay mental and physical decline, and are better predictors of long and happy lives than social class, IQ, or even genes. That finding proved true across the board among both the Harvard men and the inner-city participants.ā Link to article.
In conversation with Al Condeluci, he explained to me that the average person maintains approximately 150 social connections [The Rule of 150] , however the research is starting to show that people with disabilities only maintain on average 25 connections. More to come on this in future episodes!
So how do we improve a personās social capital?
4-Stage Framework for Building Social Capital:
On the podcast, Al Condeluci shares:
1) Understand the personās affinities and passions. This requires a cultural shift from deficits (what a person cannot do) to a profile of assets.
2) Where do these affinities and passions happen in the community? For every interest, there is a group of people in the community that enjoy those interests. Find where these interests exist in the community. This is where people will gather around an interest, and creates similarity, rather than difference. This forms a connection point.
3) Learn what is expected of people when they look to join the group or community. Once you have an understanding of the expectations of a person in these settings you can then coach and prepare the person you are supporting to understand what those expected behaviours.
4) Find the gate keeper. This is someone that is already a part of the community that can help to facilitate relationships with others.
(More detail on this framework is provided in the podcast, and in Alās book 'Social Capital: The Key to Macro Change')
Building Social Capital in Action:
Keenan Wellar, Co-Leader of LiveWorkPlay, leads the organization to implement Alās 4-stage framework for their clients. Keenan shares that taking this approach is a lot of hard work, and takes some figuring out. They donāt always get it right the first time.
Keenan shares the story of Chris, a young man with an intellectual disability, who is a soccer player and his current team wasnāt working out. The LiveWorkPlay team worked with Chris to find him a new team that would be inclusive and accepting of what Chris brought to the team. They met with Chrisās new team to educate them on being inclusive, however, the team said this is who we are ā we are accepting of everyone.
Chris went to his soccer game, and it was overlooked that he didnāt have a ride home. The next morning the LiveWorkPlay team was in a panic to learn that Chris was invited to go out for beers with the team after the game, and someone drove Chris home. Chris didnāt get invited out for beers and driven home because he had a disability, it was because he is a part of the team. A huge thank you goes out to Al & Keenan for the work that they do to improve social capital for people with disabilities!
Thank you for reading to today's blog! If you liked this episode, and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.
Love & Respect, Eric Goll
Resources:
How to contact Al Condeluci:
Website: http://www.alcondeluci.com/
Contact: http://www.alcondeluci.com/contact/
Location: Pittsburg PA, USA
How to contact Keenan & the LiveWorkPlay team:
Website: http://liveworkplay.ca/
Website: https://keenanwellar.wordpress.com/
Contact: http://liveworkplay.ca/contact-us/
Phone: 613-702-0332
Location: Ottawa, Ontario, Canada
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Dr. Jen created the The Umbrella Project which embodies the idea of using challenges life throws at us as an opportunity to learn new skills and cope.
In this weekās episode of the Empowering Ability podcast, I had the pleasure of chatting with good friend, Dr. Jennifer Forristal (aka Dr. Jen). Dr. Jen helps us to understand the approach a Naturopathic Doctor (N.D) takes with a patient, educates us on gluten/dairy/ egg free diets, shares common questions and answers from the developmental disability community, and she shares her amazing work with The Umbrella Project.
Let it rain ā The Umbrella Project
One of my favorite quotes is:
āLife isn't about waiting for the storm to pass. It's about learning how to dance in the rain.ā āVivian Greene.
Dr. Jen has created the The Umbrella Project which embodies the idea of using the challenges that life throws at us as an opportunity to learn new skills, and develop our ability to cope.
Dr. Jen, Founder of the project, shares, āThe Umbrella Project is a paradigm that I have built to help people better understand the world of coping, positive phycology, and all of the skills that we use to have better wellbeing. The skills like self-compassion, resilience, mindfulness, and purpose have same research outcomes; they help us take on life and thrive no matter what is happening to us. I call it The Umbrella Project because I think about the stresses of life like rain, they are inevitable and we try to avoid them, but we are not going to. It is better for us to think about how to prepare for those days than it is to try and eliminate those days from our lives. We take the stress and the challenges of life and use it as a tool to build coping skills ā what we call umbrella skills. Iāve built The Umbrella Project to do this, and we have brought it into schools to teach kids, and we are now educating parents as well.ā
How Does The Umbrella Project Teach Kids?
Paraphrasing from the podcast Dr. Jen Shares:
- We share the language, and help kids understand what the skill is.
- We show kids the outcomes of those skills and tell them the research. It is amazing what kids can absorb!
- We help them go into the world and see these skills in action. For example, when you see someone being resilient it makes you more resilient yourself.
On the podcast, Dr. Jen shares how they are teaching parents these skills.
What Does a Naturopathic Doctor Offer?
Paraphrasing from the podcast Dr. Jen Shares:
Naturopathic doctors (N.D.s) are primary care providers in Ontario. N.D.s have the same training same as a medical doctor for first 2 years including; diagnostics, blood work, etc.. Where we branch off is that we use more natural styles of treatment such as, exercising, eating better, taking the right supplements, stress reduction. There is so much research on how these interventions are effective at treating many different conditions.
Naturopaths work to understand the cause of what is going on, rather than just focusing on symptoms. A N.D. spends a lot more time with a patient, and we work toward bringing that person to an optimal state of wellbeing. For example, if someone had a skin condition we would look at things like what is going on with their gut health, not just put a cream on the rash. OR if someone was experiencing anxiety we would spend a lot of time looking at the lifestyle things that would help them come out of that state of anxiety and address the underlying things, rather than just give them a medication to alleviate the symptom of anxiety.
Gluten / Dairy Free Diets:
Paraphrasing from the podcast, Dr. Jen shares:
There isnāt a cookie cutter approach, and recommendations are always individualized. The research shows a certain percentage of the population responds really well to gluten free & dairy free diets. Eggs come up often as well. It is worth trying this type of diet and seeing if it works for you. You can start to see evidence of positive changes in as little as 1 to 2 weeks. It isnāt something that you have to commit to for a life time. Look for noticeable changes, you might not see the full impact of the changes, but you can start to see results. There is often gut symptom that comes up from eating these foods, and it is easy to see changes in these symptoms.
Are There Common Questions You Get from the Developmental Disability Community?
Paraphrasing from the podcast, Dr. Jen shares:
Often, when I see these families biggest thing that I see is that parents get very tired and burnt out. The parent brings in the child, and focus shifts to the parent. We discuss getting better balance in their life. If the parents are healthy then it seems to trickle down to the rest of the family.
When it comes to kids, sleep is a big thing. If one person isnāt sleeping then the whole family can be impacted.
On the podcast, Dr. Jen also discusses the importance of sleep, and provides sleep tips. She also shares how to find the best N.D. for you.
A huge thank you to Dr. Jen for coming on to the podcast and sharing her amazing work. If you are interested in learning more about The Umbrella Project, Dr. Jen would love to talk with you about it.
Thank you for reading to today's blog! If you liked this episode, and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.
Love & Respect,
Eric
Resources:
The Umbrella Project Curriculum and Newsletter: Click Here.
Email: Drjen@umbrellaproject.co
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Don is one of the worldās leading experts on siblings, and has supported siblings for the last 35 years.
Don Meyer, Director of the Sibling Support Project.
The Sibling Support Project is a national program in the United States, with international presence, dedicated to the millions of brothers and sisters of people with developmental disabilities. The program is supported by Washington stateās largest early intervention center, the Kindering Center.
Why Are Brothers and Sisters So Important?
Paraphrasing from the podcast, Don Shares:
- Anything we can say about being a parent, we can put ditto marks underneath for siblings. The research says siblings have parallel experiences to their parents. But, when we look at the services, and considerations that siblings get - siblings get the short end of the stick. In the USA, there are 200-300 people that have full-time jobs to support parents, there is 1 person with a full-time job supporting siblings (and that is Don).
- Brothers and sisters have the longest lasting relationship with a person that has a developmental disability. This relationship is lifelong. When mom and dad are no longer available the brother and sisterās will make sure their sibling will live a dignified life in the community.
- No one logs on more moments and minutes with their brother or sister.
- No one has a greater impact on the social development of a person with a developmental disability.
Why Are Siblings Underserved?
Paraphrasing from the podcast, Don Shares:
Siblings are off the organizationās radar screens because they not squeaky wheels. As siblings outlive their parents service providers are beginning to realize there are these brothers and sisters out there.
If you want to ensure a good long-term outcome for people with disabilities then invest in their siblings because they are going to be there in the long haul.
There is reason to believe that intervening with siblings, even young siblings, has a benefit to everyone.
How Can Service Providers Invest In Siblings?
Paraphrasing from the podcast, Don Shares:
Service providers can create initiatives that specifically reach out to brothers and sisters, and they can change their policy to explicitly invite brothers and sisters.
Provide siblings information that they think is important. Brothers and sisters have a lifelong need for information. This is a parallel that siblings share with parents.
How do siblings get their information? They are lucky if they get it from their parents. Educational materials need to be prepared specifically for siblings.
Sibshops
Don goes around the world and shows people how to start Sibshops; peer support and education programs for school aged siblings that have a brother or sister with a developmental disabilities. There are 350 Sibshops worldwide, including in the USA (250), Canada (30), Iceland, Ireland, and Japan. Sibshops got their start in 1982, and Don has been training people on how to run Sibshops since 1990. The typical Sibshop age spread is 8-13 years old. This age spread is tweaked all the time ā sometimes as low as 6 years old, and some organizations even have teen Sibshops.
One of the biggest benefits of Sibshops that Don has observed is the peer to peer support and connection with other kids that are walking down a similar path. Don has met many siblings that donāt talk to another sibling until they are in their 40ās! It is unheard of for a parent to wait 40 years before meeting another parent with a child that had a developmental disability. But, this is the reality with siblings. (In my own experience, I didnāt connect with another sibling until I was in my late 20ās. Also, I recently facilitated an adult sibling meeting and it was the first time 30% of the group had ever connected with another sibling.)
Don shares, āWe are giving young siblings a chance to meet young siblings, learn about the services their brothers and sisters are getting, and to learn how others are dealing with sticky situations. We have designed Sibshops to be fun, because they are for kids. We have a celebration of contributions made by brothers and sisters, and we mix content activities with recreational activities.ā
The University of Washington has researched the effectiveness of Sibshops and found:
- Over 90% of respondents said they had a positive effect on how they felt about brother or sister.
- 2/3 of respondents were taught coping strategies.
- 94% said they would recommend Sibshops to others.
- 3/4 of respondents said Sibshops impacted their adult lives.
Don Shares, ā(The value of Sibshops isā¦) to be in the community of people who get it. To vent in a non-judgmental forum, to know you are not alone, and learn about resources and strategies.ā
On the podcast, Don shares the unique concerns and opportunities that he has observed after interacting with 1000ās of siblings around the world. The list includes concerns like guilt and embarrassment, but also includes opportunities like maturity and diversity. I recommend you take a listen to the podcast to hear all of Donās insights.
This podcast is packed full of resources for siblings, which are all listed below in the resource section.
A big thank you goes out to Don for joining us on the podcast and sharing his work and insights on siblings!
Thank you for reading to today's blog! If you liked this episode, and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.
Love & Respect,
Eric
Resources:
Social Networking Groups for Siblings:
Sibnet Adults Click Here
Sib Teen Click Here
Sibshop curriculum Click Here
The Sibling Survival Guide, created with Sibling Leadership Network. Click Here
The Sibling Slam Book ā by teen sibs for teen sibs. Click Here
Views From Our Shoes ā collection of essays from young siblings. Click Here
Thicker Than Water ā collection of essay from adult siblings Click Here
Being the Other One, by Kate Strohm Click Here
Riding The Bus with My Sister, by Rachel Simon Click Here
Special Siblings, by Mary McHugh Click Here
Paper: What siblings would like parents and services providers to know. Click Here
Contact Don
Email: info@siblingsupport.org
Phone: 206-297-6368
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
In this weekās episode on the Empowering Ability Podcast we welcome guest Dr. Annick Janson, whom resides in NZ. Dr. Annick Janson is a clinical phycologist, and a mother of 3 children. Her youngest child, Yaniv, is on the spectrum, and life changed quite a bit when he came into their lives. Annick carries the deep personal experiences of being both a family member and a service professional.
As a professional, clinical phycologist, Annick followed a typical pathway, and became dissatisfied with the outcomes they were getting.
On the podcast Annick Shares:
ā4 years ago, I met Sylvana Mahmic, CEO of Plum Tree service provider for young children that have a developmental disability in Australia - serving 700-800 people per year. [Both Sylvana and Annick have a child with a disability.] (They asked) if we had to scrap everything, what would be the best service offering for families that will make a serious difference?ā
They took a design thinking approach, including an ethnographic research approach and rapid prototyping to build a learning program called 'Now and Next'.
Annick Shares, ā(We looked at) how can parents use their learning to build on success, and get better, and better results for their children. We started with 18 sessions, and it is now down to 8 group sessions, and 1 one on one session.
The learning program shifts the mindset of parents to understanding the power of their own agency, and the control they have over their wellbeing.
Why a Learning Program?
Paraphrasing from the podcast Annick Shares:
We are using a learning program because we found people (parents) are feeling overwhelmed, and there generally isnāt something wrong with them (grief, denial, etc.). Annick didnāt want to generalize, but what they found is that what people need is to learn strategies and solutions to get the results that are meaningful to them. Now and Next is a learning framework, rather than a therapeutic framework.
The Now and Next Program VS. The Traditional Model
There are 5 areas of differentiation that the Now and Next Program focuses on Vs. the Traditional Model.
Paraphrasing from the Podcast Annick shares:
- The Initial Interview:
In the initial interview with a professional they ask you āTell me about your child?ā This was a stressful situation as a mother. You eventually sayā¦ "my child canāt do this, and canāt do that." Parents are left feeling terrible. Until now we havenāt really had a better way.
In the Now and Next Program, we used the theory of gamification and created a game called, 'Pictability'. We chose pictures for the game based on our research of what people had used their individualized funding for. We designed the game so that people are brought straight into the strength domain using projective identification. People are able to identify a great future for their child and create a vision board with a long-term vision, and short-term goals. Games can bring out a lot of creativity and learning.
- Notes are Shared:
In a typical parent ā professional relationship the professional is the one that is taking and keeping the notes. These are often written up in a report by a professional that may be written in jargon and can be hard to understand for families.
With Now and Next Parents hand write their own goals, and we use technology to create a multi-media report so those goals can be shared with loved ones and supporters easily.
- Working on Goals:
In the traditional model, I often hear that it is really hard for parents to come up with goals, and the goals are written up by the professional, as mentioned above.
In Now and Next, parents define and work on their own goals, and they become empowered. Parents choose their own goals, and parents are committed to these goals because they have chosen them.
- Positive Psychology:
The Now and Next Program is the first of itās kind (to Annickās knowledge) to incorporate the concepts from Positive psychology. Traditionally psychology looked at how we can get someone from a -3 closer to zero, say -1. Positive psychology looks at how can we get someone who is at zero to +2.
Martin Seligman, one of the forefathers of positive psychology, taught us the concept of learned helplessness, which says that we bear unpleasant circumstances because we have learned they are un-escapable. But, through prospection we are able to look into the future and build a better future for ourselves. We looked at the prospection model and integrated these ideas into our model.
- Sustainable and Scalable:
With the traditional model, there is a power imbalance and families are dependent on professionals. This is not sustainable. There is limited funding for professionals, and we cannot rely on this.
When I talk to professionals and parents all around the world and ask them how they would rate their partnership their answers donāt always match up. At the end of the day, parents are expecting professionals to do the work to āfixā their child. As a society, we have put professionals in high regard, and we have given them power.
With the Now and Next Program we hold parents as the experts, and we are giving parents the tools they need to build the future they want. We have also found that Parent to Parent facilitating has proven to be most effective because of the deep understanding and empathy parents have for each other. This contributes to the scalability of the program because participants are becoming facilitators, and they can then train local people.
The Now and Next Program is measuring the amount of agency (i.e. empowerment) that a parent has, and they have demonstrated significant increases post program.
āIn April 2017, the peer facilitators and alumni of the Now and Next program held their inaugural conference, entitled āBy Families, For Familiesā, in Sydney, Australia. At this conference, something groundbreaking transpired, something both profoundly significant and genuinely radical: parents of young children with disability and developmental delay actively accepted responsibility for asserting their ānatural authorityā (Kendrick, 1995) in their partnerships with their childās professionals and therapists.ā Read more from the source article here.
Annick Reflects on the turning point with her son, Yaniv:
āI was disappointed in professionals trying to get Yaniv to fit into a ānormalā box, (which wasnāt working very well). There was a lot that he was teaching me, and we decided to go for the amazing and genius box. In high school, Yaniv became interested in art. In art class, he required less of a teacher aid, and this motivated Yaniv. Whereas, in the more academic classes he needed more of an aid. We took the āEye of the needleā approach, and everything they were trying to teach Yaniv would go through art. An artist needs to have a bio, and the way that you write it is by pushing this button on the computer. Today, Yaniv is an international artist. Learn more about Yaniv and his art through his website Yanivjanson.com.
A huge thank you to Dr. Annick Janson for coming onto the podcast! If you would like to learn how to bring Now and Next to your area please reach out to Annick! (email: annick@egl.ac.nz)
Thank you for reading to today's blog! If you liked this episode, and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.
Love & Respect,
Eric
Resources:
Annickās email: annick@egl.ac.nz
Website: egl.ac.nz
Blog: Click Here
Videos: Click Here
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
In 1995, Patti looked to redesign the disability support organization, moving away from the norm, and she co-founded Neighbours Inc.; an organization that supports people in an individualized way to live a full life in a community in the of their choosing.
What led Patti to do things differently?
Paraphrasing from the podcast, Patti Shares:
It was the inequities that I saw. In the group homes (I worked in), people were living with the same people that they were living with in the institutions, and in some cases people that they didnāt like. People were going to day programs instead of having a job, they were all riding in the same van. They were living a separate life from everyone else. The people living in the group home had a nicer home, but life wasnāt all that different than living in an institution.
The staff working in the group homes wanted to do good things for people, and were committed to helping people to have a full and meaningful life. But that wasnāt happening.
Patti discovered that it was the way that the supports were designed that was preventing the outcomes of living a full life. āNo matter how hard we were working it didnāt matter, there was a more global structural issue. We needed to design the support differently. The supports we were providing were keeping people from living the life they wanted to live. Instead of helping people, the structure of the work we were doing was hindering people from going in the direction they wanted.ā
Patti felt that she had to take some personal responsibility. In her own heart, she felt that she had to do something.
She Created Neighbours
Neighbours started with the fundamental beliefs that people should be in control of their life (supports, services, homes, etc.); not the agency. Patti shares, āThis is a dramatic shift. We are working for the person, they are the boss. If they decide to go (fire Neighbours Inc.) they can go, and they can take their money. (At Neighbours Inc.) we didnāt want people to be dependent on the developmental disability system. If you are dependent on the system (funding) then you are stuck. We invested in looking into other resources for people. There is no one that we support that is wholly supported by the government. (The people Neighbours Inc. supports have a combination of) social resources, support resources, and community resources.ā
The Neighbours Inc. 5 Values:
Neighbours Inc. was founded upon 5 essential values that are creating the outcomes of people living the life they want to live. Patti calls this their āInvestment frameworkā and shares, āIf you invest in these areas with people you can help them develop a meaningful life.ā
Paraphrasing from the podcast Patti shares the 5 values:
Value 1 - Dreams and Vision: Peopleās lives and support should be built upon a personās dreams and vision, not based on a program. A lot of people have not had a lot of life experience, so when you talk to people about how they want to live their life it is really hard for them to know how they want to live their life. We need to support people to explore, to see the world, and to see what is possible. A lot of people have lived isolated lives with supporters coming in and out of their lives for years. We have to come in and build trust. (At Neighbours Inc.) we use Maps and Paths ( as part of our process (to help people create their dreams and vision), and this is a process over time.
For more information on person centered planning processes such as MAPS and PATH, see Inclusion Press (Forest, Pearpoint, OāBrien, Kahn) Click Here
Value 2 - Choice and Control: People should have control over their own life, and the responsibility that goes along with that. Any money to support a person is their money, it is their budget, and they have authority over their budget (Individualized budgets). They are the boss of their own staff and make decisions on who they hire, fire, and what they want to pay them. We think people should have control of their own home, so we don't own any property. Instead, we support people to rent and buy their own homes. If a person decided they didnāt want us to work for them anymore then it is their home, and their money.
Value 3 ā Finding Gifts and Strengths: Helping people figure out who the person is, and what they have to offer the world. What is the personās gifts? What is their passion? This is helping people see themselves differently, and helping other people to see the person differently (mindset shift from looking at deficits).
Value 4 ā Places to Share Gifts: We help people to find the place to share their gift. These are places in the community where the person is valued as an asset. This is the reason we made a decision not to have offices (because of their commitment to helping people finding places in community).
Value 5 - Meaningful Relationships: We support people to have meaningful relationships in their life (Patti views this as the most important value). Good paid relationships are critical, but beyond that it is important to have non-paid relationships ā Friends. The stats are show that loneliness kills more people than smoking. When we look back on our lives it is the people you loved, and the people who loved you that you remember. With disability, it is often a small number of people that you love and who love you, and it is usually our family.
On the podcast, Patti shares several stories of amazing people she has worked with and how they embraced these values to live ordinary lives in community. One of Pattiās stories is about a 79-year-old woman moving out of an institution, after 50 years of confinement to the institution grounds, and creating her life. It is an incredible story that I recommend listening to.
What led Patti to do things differently?
Paraphrasing from the podcast, Patti Shares:
It was the inequities that I saw. In the group homes (I worked in), people were living with the same people that they were living with in the institutions, and in some cases people that they didnāt like. People were going to day programs instead of having a job, they were all riding in the same van. They were living a separate life from everyone else. The people living in the group home had a nicer home, but life wasnāt all that different than living in an institution.
The staff working in the group homes wanted to do good things for people, and were committed to helping people to have a full and meaningful life. But that wasnāt happening.
Patti discovered that it was the way that the supports were designed that was preventing the outcomes of living a full life. āNo matter how hard we were working it didnāt matter, there was a more global structural issue. We needed to design the support differently. The supports we were providing were keeping people from living the life they wanted to live. Instead of helping people, the structure of the work we were doing was hindering people from going in the direction they wanted.ā
Patti felt that she had to take some personal responsibility. In her own heart, she felt that she had to do something.
She Created Neighbours
Neighbours started with the fundamental beliefs that people should be in control of their life (supports, services, homes, etc.); not the agency. Patti shares, āThis is a dramatic shift. We are working for the person, they are the boss. If they decide to go (fire Neighbours Inc.) they can go, and they can take their money. (At Neighbours Inc.) we didnāt want people to be dependent on the developmental disability system. If you are dependent on the system (funding) then you are stuck. We invested in looking into other resources for people. There is no one that we support that is wholly supported by the government. (The people Neighbours Inc. supports have a combination of) social resources, support resources, and community resources.ā
The Neighbours Inc. 5 Values:
Neighbours Inc. was founded upon 5 essential values that are creating the outcomes of people living the life they want to live. Patti calls this their āInvestment frameworkā and shares, āIf you invest in these areas with people you can help them develop a meaningful life.ā
Paraphrasing from the podcast Patti shares the 5 values:
Value 1 - Dreams and Vision: Peopleās lives and support should be built upon a personās dreams and vision, not based on a program. A lot of people have not had a lot of life experience, so when you talk to people about how they want to live their life it is really hard for them to know how they want to live their life. We need to support people to explore, to see the world, and to see what is possible. A lot of people have lived isolated lives with supporters coming in and out of their lives for years. We have to come in and build trust. (At Neighbours Inc.) we use Maps and Paths ( as part of our process (to help people create their dreams and vision), and this is a process over time.
For more information on person centered planning processes such as MAPS and PATH, see Inclusion Press (Forest, Pearpoint, OāBrien, Kahn) Click Here
Value 2 - Choice and Control: People should have control over their own life, and the responsibility that goes along with that. Any money to support a person is their money, it is their budget, and they have authority over their budget (Individualized budgets). They are the boss of their own staff and make decisions on who they hire, fire, and what they want to pay them. We think people should have control of their own home, so we don't own any property. Instead, we support people to rent and buy their own homes. If a person decided they didnāt want us to work for them anymore then it is their home, and their money.
Value 3 ā Finding Gifts and Strengths: Helping people figure out who the person is, and what they have to offer the world. What is the personās gifts? What is their passion? This is helping people see themselves differently, and helping other people to see the person differently (mindset shift from looking at deficits).
Value 4 ā Places to Share Gifts: We help people to find the place to share their gift. These are places in the community where the person is valued as an asset. This is the reason we made a decision not to have offices (because of their commitment to helping people finding places in community).
Value 5 - Meaningful Relationships: We support people to have meaningful relationships in their life (Patti views this as the most important value). Good paid relationships are critical, but beyond that it is important to have non-paid relationships ā Friends. The stats are show that loneliness kills more people than smoking. When we look back on our lives it is the people you loved, and the people who loved you that you remember. With disability, it is often a small number of people that you love and who love you, and it is usually our family.
On the podcast, Patti shares several stories of amazing people she has worked with and how they embraced these values to live ordinary lives in community. One of Pattiās stories is about a 79-year-old woman moving out of an institution, after 50 years of confinement to the institution grounds, and creating her life. It is an incredible story that I recommend listening to.
A big thank you to Patti for coming onto the podcast/ blog and sharing her insights on creating the environment for people to succeed in building a full and meaningful live. I encourage you to reach out to Patti if you would like to explore this thinking for your organization or family.
Thank you for reading to today's blog! If you liked this episode, and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.
Love & Respect,
Eric
Resources:
Website: Neighbours-inc.com
Education and stories: Neighbours-international.com (video + writing)
Maps and Paths: Click Here
Email Patti: Pattiscott@neighbours-inc.com
Discussing bio medical (non-medical) approaches to well-being for people with disabilities. This weekās podcast/ blog is a rebroadcast from Episode #026 with Janet Klees.
Janet Klees has been involved in the lives of people with disabilities, their families, and allies in community for over 30 years. Until recently, she has been coordinator with the family-governed Deohaeko Support Network for over 20 years. She is the author of three books which are directly rooted in the Deohaeko experience, (We Come Bearing Gifts; Our Presence has Roots; Deohaeko Decades) and which are now sold around the world. Currently, Janet is the Executive Director with a family support organization, the Durham Association for Family Respite Services.
Bio- Medical (non-medical) Approaches:
The Durham Association for Family Respite Services has started a family group to discuss and learn about the impacts of diet, exercise, and mindfulness as alternatives to medication and behaviour management approaches. In my opinion, these are common sense approaches that can be explored at little cost that can get down to the root cause of symptoms or behaviours that a person is experiencing. Peter Marks, Founder and Director of the Centre for Conscious Care, got Janet and these families thinking about these integrative approaches and you can find additional resources on his website.
Paraphrasing from the podcast, Janet shares:
One of the things we have started to learn about it diet. Families have started to experiment with eliminating or reducing gluten and dairy from their childās diet, and they are sharing the results with other parents. There is a lot of research about gluten and ADS, but this isnāt just for people with ADS, it is helping people with other developmental disabilities.
(Note: In a conversation with Dr. Jennifer Forristal N.D. at a Waterloo Region Family Network Conference, Dr. Jen shared that this type of dietary change can be overwhelming for a family pull off. Dr. Jen shared with the group, to start small - start with trying no gluten or dairy for just one week. With a one week trial you can notice changes, and if those benefits are great enough you can decide to continue, or not.)
Once peopleās diets are in order we can start to look at other things. One of these things is sensory integration. A person might either be over stimulated or under stimulated. There are techniques, such as using a small trampoline for 20 minutes, that are effective in helping people be calm or focus.
People are also interested in medical marijuana, and the potential benefits that it may have - especially with epilepsy. We have some families experimenting with this under the care of doctors.
We are also looking at mindfulness and bring mindfulness practices to people with disabilities. However, it isnāt just thinking about the person with the disability, it is thinking about the team that supports them. The person supporting needs to be calm and present in the moment.
If we start at a biological end then we might be able to get to the root cause of the symptoms someone is experiencing. Naturopathic doctors can be a good resource to start to think this way, make sure to find a naturopath that is familiar with developmental disabilities.
Peter Marks, Director of the Centre for Conscious Care, is joining us on an upcoming episode to teach us more about these approaches. Check out the Conscious Care website or you can pick up the book on Conscious Care from Inclusion Press to learn more.
Thank you for reading to today's blog! If you liked this episode, and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.
Love & Respect,
Eric
Resources:
Peter Marks: Conscious Care Website- http://centreforconsciouscare.ca/
Book: Conscious Care and Support for individuals with Autism & Other Developmental Disabilities: Balancing Body, Brain & Being by Peter Marks and Gareth Marks
Learning events In Durham Region: Click Here
Contact Janet Klees: janet@legacies.ca
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
This weekās guest on the podcast/ blog is David Hasbury. David shares the history of disability, and disability services to help us understand how we got to where were are today. David also shares how we can think differently about disability to create a world where people with disabilities are included as citizens.
For more than 30 years, David has been committed to empowering people with disabilities to creatively shape the world around them. Since 2008, Dave has collaborated with Patti Scott, his wife and Neighbours C.E.O., in supporting people with disabilities, families, communities, organizations, and governments in making it possible for people with disabilities to live as contributing citizens and community members, where all can make a difference. David has been involved with person-centered planning since the 1980, and does his work all across the world.
This blog is a summary of my conversation with David, and includes many of the insights that he shares on the podcast.
Why Are Disability Services The Way They Are?
To answer this question David shares the history of developmental disability and the 3 big waves he sees.
Wave 1: In the 1800ās there was no definition of developmental disability. People were labeled as strange, crazy, or imbeciles and often thrown into jail. There was a lot of shame with disability, and people lived with families and stayed on farms.
Wave 2: Eventually, governments discovered people with developmental disabilities didnāt belong in jail, and a more hospital like setting became the norm - institutions. It was a progression from jail, and it was 'protecting' people in the community from these rather āoddā folks. This lasted, for 80 years, until the 1950ās and 1960ās when the (poor) treatment of people in institutions became exposed, and it was realized that people were being warehoused, and this wasnāt right either.
Wave 3: Families that kept their sons and daughters at home got together and started to find support for their children and they focused on education in classrooms, giving birth to āspecial needsā classes. We progressed from seeing people as strange and crazy to the ār-wordā, and we categorized people as trainable, educable, or severely or profoundly disabled. We formed groups/ places for people to go based on these categories. The government the applied these categories to residential life as well.
We were looking for places for people to go where they would have āappropriate coverageā and safe places in community. Creating places became the thing we did and the government started buying the services of organizations (many founded by groups of parents). The government bought places in community where people with developmental disabilities would be covered (kept safe).
The Next Wave: In the last 30 years, the idea of people being individuals and citizens evolved, and person-centered planning emerged. We started to imagine people with developmental disabilities as citizens, and think about how can they be included in community.
People with developmental disabilities want a real education, a real job, a real life - not special.
In the 2000ās the government in Ontario started to fund this type of support (Passport) to help provide these opportunities for people with disabilities.
Creating places and having coverage is still the dominant model. Even with person-centered funding, people are still buying places and coverage with these support dollars. We need to think differently about that. The model of placement and coverage was not designed with the idea of citizenship, control and inclusion, and community involvement in mind. Itās really difficult to make that happen (person-centered planning) in peopleās lives when you are using an old system that was designed for a different purpose. And so, we need to do things in new ways, and we need to think differently.
Placement and coverage is still dominant. In Ontario, more than 3/4 of the government budget is spent on placement and coverage, and is serving less than 1/3 of the population. So, 2/3 of the population is getting very little support.
Shifting To A More Person-Centered Approach.
We need to think not so much about buying spaces, but we need to think about investing the little bit of resources we have available to grow our presence in the area the individual is truly interested in.
Historically, we havenāt imagined growth for people historically for people with developmental disabilities. For example, we might think this person has the mind of a 5-year-old, and we imagined that life stopped at some point for that person.
We might be stuck in a placement and coverage system, but how can we start to take some of these resources or negotiate these resources to use them in an individualized way
Start with what can you do. Probably the most disabling thing is actually thinking disabled, which is canāt focused
How Do We Make The Person-Centered Shift?
Individuals & Families:
Imagine the life that this person wants to have! What does Jane want to do with her time? Where does she want to be? Who does she want to be with? It is important for families to think about the person that they love in relation to other people in a community and being valued for who they are. We need to start to think about people differently.
Up until someone is adult we focus on that personās problems; in education, in health care, in support, and we need to think differently when it comes to community life. In community life, we need to think about what that person brings (their gifts, and contributions).
There isnāt a group of citizens out there, we each (individually) need to be able to decide where we are going to go, and were we are going to put our time, energy and resources. Families need to think, what can we do to make this possible for those that they love.
If Jane loves music and Jane can start going to karaoke night once per week for 2 hours every week, for only 2 hours, people will start to recognize that Jane loves singing and she can start to build relationships. Then, there is then a possibility for this to become more (an investment).
If we invest in things that we love, those things grow. But, we have focused on placement and coverage because we have thought that people donāt have something to offer. That is the shift, people do have something to offer and we have to give them the opportunity to grow that.
Government and Service Organizations:
We need to think about people as individuals.
We need to think about the resources for individuals individually. Resources need to be individualized, money needs to be individualized, and people need control over that money. The people hired to support people with intellectual (developmental) disabilities needs to be individualized. There is no generic intellectual (developmental) disability.
If you are embedded in a placement and coverage model, you canāt get to citizenship from there. The principals and structure (of safety and somewhere to go) wonāt let you get there (to citizenship). For example, when there is grouped support of 3 people (with a developmental disability) in a house with 1 staff person and Bob wants to go out, either everyone has to go, or Bob canāt go. (A question to consider: Is this ordinary?)
From a government perspective, 20-25 % of the population of people with a developmental disability is getting 80-85% of the resources, this isnāt sustainable.
Daveās partner, Patti Scott created an organization serving people that have a developmental disability called Neighbours in New Jersey, USA. Neighbours empowers their customers by giving them choice and control of their life including; their staff, what they do with their time, and where they live. Patti Scott is joining me on an upcoming podcast, so be sure to tune in to learn more about Neighbours.
A big thank you to Dave Hasbury for joining us on the podcast and sharing his insights to help us think differently about disability!
Thank you for reading to today's blog! If you liked this episode and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.
Love & Respect,
Eric
Resources:
Website: Neighbours-international.com
Follow Neighbours International on Facebook: https://www.facebook.com/NeighboursInternational/
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Learn what intentional community is, and the building blocks to build your own intentional community.
This week, I am re-sharing an important conversation from Episode #022 on Intentional Community, with Janet Klees and Linda Dawe.
Janet Klees has been involved in the lives of people with disabilities, their families, and allies in community for over 30 years. Until recently, she has been coordinator with the family-governedDeohaeko Support Network for over 20 years. She is the author of three books which are directly rooted in the Deohaeko experience, (We Come Bearing Gifts; Our Presence has Roots; Deohaeko Decades) and which are now sold around the world. Currently, Janet is the Executive Director with a family support organization, the Durham Association for Family Respite Services.
Linda Dawe is a founding member of the Deohaeko Support Networkā a family led collective that has embodied diversity, inclusion and community since its inception in the mid 1980ās.
Intentional Community
There is a lot of discussion in the disability sector about what community is and the definitions can vary widely. The conversation can range from placing groups of people (such as people with a disability and seniors) together in a building to support each other, to a diverse group of individuals coming together to build relationships and share their gifts with each other.
Amazing community builder, Linda Dawe shares what she has learned about building an intentional community at Rougemount over the last 25 years:
āIntentional community is not something that you measure - it is something that you feel. It isn't a thing, it is in the hearts of people, and people embrace it to different degrees. One of the things that was important in creating the intentional community at Rougemount was the diversity in the residents that represented the actual community. Not placing groups of people together, such as seniors and people with disabilities. Intentional community at Rougemount started out as a grand thing, but simply it is just being in relationship with each other. People living well together. It requires effort, consciousness, and core people to hold the values of the community.
Janet Klees adds: āSimply put, community is being a good neighbor. At Rougemount people look for opportunities to be good neighbors and then talk about it, and hold up examples of it.
Intentional community isn't a building - it is a mindset! We can take the ideas with us, and many groups have. People have come into Rougemount and have seen how it works, and then brought it into neighborhoods with single family homes, and brought it into condo buildings. Rougemount is just an example of how it can work.
The Key Takeaways for me are:
-
Building Intentional Community starts with rich diversity and upholding neighbourly values.
-
Fostering Intentional Community requires us to get a common understanding of each other, and through that understanding building trust and respect. From here we can show love to each other in small little ways, and uphold those acts of love.
-
Be intentional in creating opportunities for people with disabilities to build relationship. Do not group them in housing or support.
Thank you for reading to today's blog! If you liked this episode and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.
Love & Respect,
Eric
Resources:
Purchase These Books to Learn More Lesson's from Deohaeko:
"We come bearing gifts" by Janet Klees
"Our Presence has roots" by Janet Klees
Learn more about Deohaeko: Click Here
Learning events In Durham Region: Click Here
Book a study tour to learn about Rougemount and Deohaeko: Click Here
Contact Janet Klees: janet@legacies.ca
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Learn how the OPZ family care system works, and hear Toni Smit's foster family experience. Also, hear the benefits and drawbacks of being a foster family.
Geel Belgium and OPZ Family Care:
The family care system in Geel Belgium evolved in the 1300's from the local legend for St. Dymphna. It was thought that St. Dymphna could cure any illness, and many people traveled to Geel to be cured, and ended up in the care of the church. When there was no more room left in the church families in Geel began caring for the ill. (For more on the Legend of St. Dymphna, listen to Episode #019 with Jackie Goldstein.) Today, the system provides formalized public psychiatric care and is called OPZ.
On the podcast Toni shares:
The OPZ patients can become boarders with foster families, and they have a 6 week orientation period to see how a the boarder adjusts to live with a foster family. If they do well in an orientation home then the OPZ tries to find a foster family. If a foster family is found, the boarder and foster family have the opportunity to get to know each other for a few days.
āYou try to receive boarders into your family as you would your son or daughter. The idea is to give people a real home for the long term.ā
Toni and her husband consider her boarders her step sons and they integrate their boarders completely into the family, and the neighbourhood.
Over the last 20 years, theyāve had 4 boarders, and they have stayed as long as they wanted. Their current boarder, Luke, has lived with Toni and her husband for the last 14 years.
Why did you become a foster family?
Toni Shares:
āIāve always been a foster mother.ā
There has always been other family members living with Toni and her partner. When Toni eventually settled in Geel her 84-year-old neighbour had a boarder from the OPZ. The neighbour couldnāt support the boarder anymore, and eventually the boarder ended up living with Toni and her husband. This was 20 years ago, and at the time there were 3,000 boarders living with families, and now there are only 300.
Why is there a decline in boarders?
Toni Shares:
"The modern way of life. The man and the woman of the household are working. 20 years ago, there were a lot of farms and often the woman stayed at home. The combination of someone always being home, and the need for help to do the work on the farm created this opportunity that was mutually beneficial. Many younger families do not even know about the OPZ, and if they do they are likely both working, and it might not make sense for them. There are also more care possibilities now that give people more choice on where they can live."
What are the benefits of being a foster family?
Toni shares:
āLoveā
It gives Toni and her husband a lot of joy and happiness. There is always someone home and it helps to give them a cozy home. It gives Toni someone to talk to, and to take care of. It is also a gratifying experience seeing the boarder grow and take on a lot more then they use to.
Toni also shares that you start thinking about life completely differently.
"Mental illness is not a contagious disease, it is an illness and it can happen to anyone. My son had an accident and now he is mentally ill. He has changed completely, and has a completely different character and you have to get used to those things."
Why shouldn't someone become a foster family?
Toni is very insistent that families should not take in a boarder as a financial solution. This is the wrong reason to take in a boarder. You do receive money for the boarder, but it doesnāt cover the costs that you have.
Also, Toni shares, "Donāt do it if you canāt accept them as part of the family."
What I took away from this conversation with Toni is that, being an relationship with her boarders has given her life meaning in a way that she wouldn't get any other way. I thank Toni for coming on the podcast and sharing her life experiences as a foster family!
Love & Respect,
Eric
Resources:
Email Toni for a conversation: toni120@.com
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Siblings supporting their brother's and sister's on friendships, dating, and dreaming big, with Melissa Janson
Today, we are kicking off our second mini-series on the podcast, and over the next few months we are going to focusing in on siblings. Siblings are often forgotten about in the family equation when there is a disability in the family, yet they can play such an important role. In this mini-series, we are going to be trying to answer a couple of questions about siblings; āWhat role can siblings play in their brotherās and sisterās lives?ā, and āWhat support and resources are available for siblings?ā.
If the sibling topic is one that interests you, you can listen to Episode #009 with Helen Rieswhere Helen shares her story and we have an important discussion about starting a conversation with your family about the role you want to play as a sibling. There are often so many assumptions about the roles family members are going to play. These assumptions are not always accurate and can lead to breakdowns, which is why it is so important to discuss the roles each family member wants to play. You might be surprised in how involved your family members want to be!
To kick off the mini-series on siblings, we have guest Melissa Janson on the show. Melissa works professionally in the disability sector, and is the sister to Yaniv, whom has a disability. Melissa and I discuss the role that we can play to support our brothers and sisters. We have a great conversation about friendships, dating, and dreaming big.
Melissaās Story
Melissa (now 28) was born in Israel and moved to New Zealand with her family in 2000. Her younger brother, Yaniv (now 25), was diagnosed with aspergers when they arrived in New Zealand. Melissa and Yaniv went to the same main stream school where Yaniv was bullied, and this was frustrating to Melissa. People couldnāt see Yanivās gift and skills like Melissa could.
Melissa explains, āPeople with aspergers can struggle to pick up social ques. It doesnāt come naturally to Yaniv to come up to someone and start a conversation, and sarcasm and humor is hard.ā However, Melissa goes on to explain that Yaniv is quite funny!
Melissa works professionally in the disability sector for an anthroposophical service provider that is grounded in the theories of Rudolph Steiner which takes a holistic view of the person; spiritually, emotionally, and physically.
Melissaās family is starting to think about what the future looks like, as a family.
Building Relationships
Melissa is very close with Yaniv. Yaniv wants to know what is happening in Melissaās life, and Melissa wants to know what is going on Yanivās life. Melissa shares, āBeing close and connected is my focus.ā
Melissa always tries to Include Yaniv in her social outings with friends. Melissa shared that, Yaniv is sometimes not sure why and can put up some resistance, but often comes along anyway.
On the podcast, I share the story of my conversation with the great Jean Vanier. Jean left me with this piece of advice, āBefriend people that have disabilities, and influence others to befriend people with disabilities.ā Melissa is playing this important role for her brother.
On the podcast, Melissa shares the story of her brotherās love interest, and how she played a facilitator role to bridge the social gaps for her brother and his date. (It is a fun story, and worth a listen).
The Power of āWhy not?ā
Melissa shares, āAiming high is something we really have to get used to doing, because I think thereās that whole bigotry of low expectations in the disability sector. As siblings, we can support by asking āWhy not?ā.
Yaniv is a painter and has a great career as a creator. He has published 4 books, and he has sold 160 paintings. Melissa shares, āPeople arenāt seeing him for his disability any more, they are seeing him as an artist. My other brother and I always feel like we are chasing Yaniv.ā
Melissa shares, āWe need to be looking at what risk can he take. I look at this positivity. From a relationship perspective when talking with my mom she didnāt think it is possible for him to have a relationship, and I responded, why not?... he is totally capable. And if he wasnāt we would facilitate that.ā
Melissa also shares this risk-taking mindset from a career standpoint, āThere is a lot of risk and uncertainty in the option of trying something first and learning the skills afterward. We are forced to figure it out when we are in the situation. There is risk here, but there is also a lot of growth that can happen.ā On the podcast, Melissa shares the story of Abdul-Karim Bouchafaa and how his growth has taken off by following his passion and creating his career as a Motivational non-speaker.
Melissa advises siblings to stay connected with their sibling, read up, listen to podcasts, and gather success stories to overcome adversity in your family. Also, she suggests we look out for what your sibling is really passionate about, and to help them ride that wave and pursue that as a career. I am grateful for Melissa joining me on the podcast to share her story and insights as a sibling!
Thank you for reading to today's blog! If you liked this episode and think someone you know would benefit, please share it with them! Be a part of the change to think differently about disability.
Love & Respect,
Eric
Resources:
Connect with Melissa
Facebook: Melissa Janson (NZ)
Email: melissajanson22@gmail.com
Yanivās website: http://www.yanivjanson.com/
Abdul-Karim Bouchafaa Motivational Non - Speaker: Watch Video
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Jessica and I discuss her approach to helping families create a home, lessons learned from the Be At Home Creative Housing Supports project , innovative housing solutions, overcoming barriers to housing, as well as some great resources.
This weekās guest on the Empowering Ability Podcast/ Blog is Jessica Cave, Creative Housing Supports Coordinator at Bridges to Belonging in Kitchener, Ontario. Jessica supports people with developmental disabilities and their families who are looking to make the next move in their life.
A New Mindset
An article in the Bridges to Belonging 2016-2017 Annual Report written by John Lord shares, the flipped assumptions of the Be At Home Housing Supports Project.
āIn reflecting on the roots of this initiative, Cameron Dearlove, executive director of Bridges to Belonging, noted how important it was to engage in āupside down thinking,ā where we assume that something is the case and build reality around that. We wondered, says Cameron, āif it might be possible to flip the assumptions about housing and people with developmental disabilities. Traditionally, we have assumed that people could not live away from parents until they were āreadyā or until all resources were in place.ā The Be At Home Project assumes that people can live in the community and that they have the resources and readiness to make it happen.ā
Jessica takes a person directed approach and works directly with families in the Waterloo Region helping them to take this new mindset, and facilitates the family through creating their vision for housing.
Some of the questions asked in the visioning process are:
What type of home do you want (Apartment, single dwelling, etc.)
Where do you want to live?
What is the timeline?
Who do you want to live with?
What is budget?
What supports do you need?
Once the vision is created Jessica helps the family to think about what resources the family already has, such as, friends, community, support, and financial. Then they will think about what what the next steps are to bring the plan to life!
Lessons Learned with The Be At Home Creative Housing Supports Project
Over the last year, Jessica has helped; 7 people to find housing, 12 people to actively work on their housing plan, and 12 people to create a plan and put it on pause to resume at a later time that is right for the family.
Jessica shares the biggest challenges and successes families have experienced so far:
The Challenges
- Affordability of housing and supports
- Long waitlists for subsidized housing
- Long waitlists for supports
The Successes
- Tapping into the network of family and friends to access community resources.
- Creatively reducing costs with roommates.
- Testing out the housing plan with a trial run, for example, living in your desired housing with your desired support for a short time period on a rental basis. (More on this below)
Innovative Housing Ideas
Testing Before Implementing: Jessica shares that by testing out your plan before implementing is a great way for people to understand what it is going to be like living on their own. It can help you understand what might work, and what might not work and you can adjust your plan accordingly. In Waterloo Region, there are programs that exist, such as Testing the Waters, and Trying It On For Size, that allow people to do exactly what their names suggest.
Going to where community resources are richest: Jessica supported a couple that moved into a co-operative community where there was already a great community established. In a co-operative, there is often a culture established where the members are expected to contribute back to the community. You can find your own way to contribute to the community, whether that is gardening, group potlucks, helping a neighbour, or game nights. Anyone can apply to be a co-op through the community housing list. There is an interview and application process to see if that is a good fit for you. Jessica shares that, another place where there is often an intentional community is Eco-villages, which are becoming more abundant around the world.
Overcoming Barriers
On the podcast, Jessica and I discuss how to overcome some of the most common barriers to a person with a developmental disability moving out on their own, including letting go and personal safety.
I thank Jessica for coming onto the podcast and sharing her valuable experience and insights to help people with developmental disabilities find a home of their own.
This wraps up the mini-series on housing. If you would like to listen/ read about the other housing episodes you can find them here.
I want to hear from you! Tell me what would be helpful for you to create a home of your own, or to help others create a home of their own. Email me at eric@ericgoll.com with your thoughts, and I will be sure to reply.
Resources:
Contact Bridges to Belonging:
Website
Bridges to Belonging Creative Housing Project: Click Here
Waterloo Region - Finding and Keeping a Home: Click Here
Lutherwood Housing Resources: Click Here
The Working Centre - Housing: Click Here
Waterloo Region Affordable Housing: Click Here
In this podcast, we discuss the most common question Brendon is asked by families, which is: 'How do I secure the future for my loved one with a disability?'
This weekās guest on the Empowering Ability podcast / blog is Brendon Pooran, Principal lawyer at Pooran Law in Toronto, Ontario. Brendon always had an interest in disability law, which stems from his life experience as he grew up with siblings that have a disability. Brendon and his team provide advice to families and agencies in the disability sector in Ontario, British Columbia and Newfoundland.
On the podcast, we also discuss consent and capacity. What is consent and capacity? And, what do we need to know about it. You can take a listen to the podcast to hear more on consent and capacity.
Securing the Future
Estate planning is the process that Brendon guides families through to create a plan for security for loved ones with a disability. We discuss both financial and relationship considerations when creating an estate plan. A major objective is to ensure that government benefits arenāt impacted by an estate.
Starting the Estate Planning Process
Paraphrasing from the podcast Brendon shares the questions he works through with families:
1) What are your objectives? If you have a loved one with a disability, what does their life look like now? What does it look like in the future?
2) What are the expenses and sources of income? What do they look like now, and what will they look like in the future?
3) Who are the people involved? There are several roles that you need to consider in your estate plan, including; an executor for estate, trustees for any trust that are set up, attorneys in power of attorney documents, and guardians that may need to be considered. *Note: The people you assign to these roles should be trustworthy (they will have access to your estate with very little oversight), conscientious and task oriented with the ability to meet deadlines, and it is a nice to have if they have a relationship with your beneficiaries.
The Will
The will is the foundational pillar of the estate plan. It will incorporate tax strategies, roles, trusts and strategies that are developed for financial security for beneficiaries of the will. Many people do not have wills, and do not understand the impacts of not having a will in place. 40% of Brendon's clients are people applying to become the estate trustee because a will was not in place. There is a cost associated with this application, as well as taxes that need to be paid that could have been avoided. Also, beneficiaries can lose social assistance benefits (ex. ODSP $1200/mo ā dental, drugs, vision), if an inheritance increases the beneficiaryās asset base to exceed $40,000 (in Ontario).
The cost to create a will and estate plan ranges based on where you live and your situation, but typically it will cost you approximately $2,500 to set up your will.
Trusts
There are several different types of trusts, and Brendon provides us with an overview of the Trusts he frequently recommends in his practice:
1) Henson Trust: The Henson Trust is a discretionary trust, which means the trustee has full authority to make decisions on the trust. This trust is not considered an asset by the Ontario Government for social assistance program purposes, and will not impact ODSP. There is also no limit to the amount of money that the trust can hold. You will also want to make sure that it qualifies as a disability trust, which helps to reduce the taxes that might be generated by the trust.
2) Lifetime Benefit Trust: This trust is typically recommended for people that have RRSPs or RRIFs in place so that these benefits can be rolled over to the beneficiary without any tax implications. A life time trust can also be used to hold assets, such as a home or property.
3) Inheritance Trust: With this trust, you can leave instructions for the trustee to disperse the trust funds as you wish. This trust is limited to $100,000, and Brendon doesnāt see this trust being used as frequently as the other two above.
Trusts are mostly written instructions left in the will, and are created when the will is executed, these are called testamentary trusts. Some families create living trusts that become active right away, called inter vivos trusts. These living trusts can be used to hold property for the beneficiaries, and the living trust can be referenced in other family member's wills so that several different trusts donāt have to be created and managed.
On the podcast, Brendon shares the story of a family that increased their estate value by over $200,000 through tax planning and trust strategies.
Brendon and I also discuss power of attorney, if a person with a disability should have a will, ODSP, RRSPs, and life insurance policies on the podcast. Take a listen if you are interested in these topics!
I strongly recommend that you consult with a professional lawyer, tax accountant, and financial planner when creating your estate plan.
I thank Brendon for coming on the podcast and sharing his important insights on securing the future for our loved ones!
Love & Respect,
Eric
Resources:
Website: Pooranlaw.com
Inspiring possibilities estate planning guide: www.planinspiringpossibilities.com
Partners for planning resources: Click Here
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Bill Hiltz shares his story of how he was mistreated and caged in an institution as a toddler, freed by loving people, and how he has grown into a leader advocating for positive change for people with disabilities.
In this podcast episode, I had the pleasure of interviewing āTeam Billā, including; Bill Hiltz, and his supporters Joyce Balaz and Arn Row. Bill is a disability advocate that is promoting positive change in the Ontario political arena by sharing what it is like to live in his shoes. Bill is non-verbal, and he is impacted by an uncontrolled seizure disorder that can rule his life.
Bill Hiltzās Story
Paraphrasing from the Podcast Joyce and Arn share:
Joyce: āWhen Bill was born there were complications with the birth that led to Billās seizures. At the time, his family didnāt have the resources and supports to provide for Bill, and Bill went into foster care system at 1.5 years old. Bill went into a number of foster families, in and out of the hospital, and then ended up at Christopher Robin, which was an institution in Ajax, Ontario. The institution was closing when Bill was 8 years old, and a family who had already adopted another child came back to the institution and adopted Bill.
Arn: āIt is important to share Bills experience in that institution. Billās time was mostly spent in a crib cage, which had 4 sides and a top on it. Bill wore a helmet because he was banging his head on the bars, which was Billās way of trying to tell whoever would listen that he didnāt want to be in there.ā
Joyce: āWhen he was taken in by the family after the institution they just loved him to death, and he lived with them for 12 years (until he was 19). The father providing most of the care fell ill, as well the 3 (other) boys of the family where moving out of the home ā so it was a time for transition (for Bill).ā
Joyce, who was Bills educational assistant (EA) at school since the age of 13, heard that Bill was looking for a new home. Bill and Joyce gave living together a couple of trial runs and it went well. Bill then moved in with Joyce. Since then they have blazed a trail with their advocacy work, and growing and learning together.
(Left to right: Arn Row, Bill Hiltz, Joyce Balaz)
Start with the Assumption of Capability
When you see Bill you wouldnāt expect him to have done the things that he has done in his life. When Bill was in the institution as a toddler he was caged because he was misunderstood. Assumptions where made about his capability, or should I say incapability. Bill was shown love and respect by the family that adopted him, and since by Joyce, Arn, and many others. Billās story highlights the dangers of starting with the assumption that a person isnāt capable.
By assuming a person is NOT capable we keep them caged and deny the opportunity to live their best life. When we start with the assumption that a person IS capable, we give that person the opportunity to grow and live their best possible life.
What is the worst thing that can happen if we start with the assumption that someone is capable? They fail, and hopefully learn so they can be more successful in their next attempt. (Yes, it is important that we consider holding people capable in an environment that is safe for them so that if they do fail they have the opportunity to get back up and try again.)
Always start by holding people capable, disability or not!
Bill taught me this invaluable lesson. When I first met Bill I assumed that Bill wasnāt capable of having a conversation with me ā and boy did he prove me wrong! Thank you, Bill.
We discuss holding people capable in more depth on the podcast.
Our Fear of āDifferentā
It took me well over 5 days of being around Bill before I actually engaged in a conversation with him. What took me so long to talk with Bill?
It was my own fear.
I judged Bill because I had perceived Bill as being different than me. This self-acknowledgement hit me square between the eyes. My sister has a disability, and I have several friends that have disabilities, and this fear was still present inside of me. What does this fear look like for others that have not had contact with people with visible disabilities like I have?
Joyce had a similar experience when first meeting Bill as an educational assistant (EA). Joyce shares, āā¦. I told the teacher that I didnāt want to work with Bill because I didnāt know how to work with him. The first time that I told Bill this he was mad, and didnāt talk to me for two weeks. Now that he has heard this story a number of times it has given him an opportunity to think about how other people view him.ā
How is your fear holding you back from interacting with a person that you perceive as different? It could be a person with a disability, a person from a different ethnic background, or a different religion.
How Do We Best Communicate with Bill (and others that have a developmental disability):
In this episode, we discuss how it can be difficult to enter into a conversation with a person when there isnāt a response or acknowledgement back from the other person. This doesnāt mean that that person isnāt interested in engaging with you. Here are 3 tips we provide on the podcast to communicate with people that have a developmental disability:
1) Be patient
2) Be sincere
3) Ask how to best communicate with the person
Bill has shared, we need to learn how to slow down. A fast pace verbal world isnāt the world that Bill lives in. Bill gives others the gift by providing them to slow down and operate at his frequency.
Bill Hiltzās Advocacy Work
Billās seizures have such a severe impact on his energy that he has forgone his recreational activities, such as horseback riding, and uses his energy to solely focus on his advocacy work.
Bill envisions a world where we are seen as we who we are, not for what is different. Bill shares, āPeople have been excluded for so long, which means people see the difference first. When people we are truly included others get to experience who we really are.ā
Bill has started the āWalk a Mile in My Shoeā project (seen in the blog cover photo) where he invites people to acquire a disability, (for example loss of sight, hearing, or physical ability), and walk beside him to experience what it is like to live with a disability for a short amount of time. Billās theory is that the experience will lead to understanding, which will lead to change.
You can support Bill by visiting his website, or participating in/ sponsoring one of his events. The proceeds go to the organization Reach for the Rainbow, which provided Bill with camp experiences as he grew up.
Bill shares his wisdom with us in his powerful poem, titled 'Understanding People'
UNDERSTANDING PEOPLE
A SET OF STANDARDS BY WHICH TO JUDGE
TO THEIR FRIENDS, THEY GIVE A NUDGE
WHEN THEY SEE ME COME THEIR WAY,
THEY STOP AND WALK THE OTHER WAY
OR EVEN WORSE, THEY STOP AND STARE
AS IF I'M STUPID AND UNAWARE.
IF ONLY THEY COULD KNOW, THAT I CARE;
HOW PEOPLE VIEW ME--IT'S JUST NOT FAIR!
I FEEL THE VERY SAME AS OTHERS DO,
THEY SHOULD TRY AND WALK IN MY SHOE.
LIFE'S NOT EASY, WHEN THE BODY THAT YOU OWN
WAS GIVEN TO YOU BROKEN-DOWN.
THEY MAY BE MEAN; THEY MAY BE CRUEL; THEY MAY BE BAD;
BUT MOST OF ALL...THEY JUST DON'T UNDERSTAND.
WITH SOME TIME AND SPECIAL GUIDANCE;
WE CAN HAVE A GREAT ALLIANCE.
FOR AN HOUR, OR FOR A DAY;
WE ALL NEED FRIENDS ALONG THE WAY.
SO WHEN YOU SEE ME COME ALONG
TRY NOT TO FOCUS ON WHAT IS WRONG;
I AM A PERSON JUST LIKE YOU,
WHO NEEDS AND DESERVES A GOOD FRIEND TOO.
JUST WALK BESIDE ME STRAIGHT AND TALL
AND BE THE FRIEND THAT I CAN CALL
WHEN I AM LONELY AND AFRAID.
JUST REMEMBER WHAT I'VE SAID:
ALL YOU NEED IS TO UNDERSTAND;
DO NOT JUDGE JUST TAKE MY HAND.
- Bill Hiltz
1998
I thank Bill, Joyce, and Arn for coming on the podcast to share their story and insights!
Love & Respect,
Eric
Resources:
Walk a Mile in my Shoe: Video: Click Here
Walk a Mile in my Shoe Website: www.inmyshoe.ca
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Parenting author, Ann Douglas, discusses parenting a child with a mental illness /disability, and practicing self-care so we are available as care-givers.
This week on the podcast/ blog I welcome Ann Douglas, author of numerous books on parenting with over half a million copies sold. Ann and I discuss her newest book titled āParenting Through the Stormā, which is a guide to parenting a child who is struggling with Mental health, neuro-developmental, or behavioural challenges. We also focus in on self-care for parents (and supporters), and discuss why it is important, tips to practice self-care, and how to create the space for yourself.
Parenting Through the Storm
In the writing of this book, Ann interviewed 50 other parents that have been through it, and she found many common threads through all of their experiences. She took her research findings as well as her own personal experiences and wrote this book to provide practical advice for parents.
On the podcast Ann shares, āI wrote this book because all 4 of my kids had some sort of challenge, and at the time I thought ā I must be doing it wrong.ā I desperately needed to know that things could get better ā and they have! Parents are resilient, children are resilient, and families are resilient. It is possible to go through all these storms together and to come out stronger and more connected on the other sideā
You can learn more about the book at www.anndouglas.net.
Is There a Right Way to Parenting?
On the podcast Ann shares, āThere is a right way for your family, and you figure that out over time. Each of my 4 kids needed a different approach to parenting. It isnāt cookie cutter, because everyone is different. There were times that 1 of our kids needed Ā¾ of the parenting energy, which left only tiny little slices for the rest of the kidsā¦. I felt guilty about thatā¦ but there are times when our attention had to shift around.ā
What is Self-Care? and Why is it Important?
On the podcast Ann shares, āSometimes people think about self-care as self-indulgence, for example, sitting on the couch eating bonbons. But, that isnāt how it usually plays out. Mainly it is about taking good care of yourself so that you have something left to give to the family member who needs you. When you are parenting a child, who is struggling you canāt afford to get completely burnt out and depleted. Without you your child will be lost.ā
āEven though it can feel selfish I would argue it isnāt selfish, it is self-preservation.ā
Practicing Self-Care
We are all unique in our own ways, and the best way for us to practice self-care is unique to us. We all have a self-care tool box filled with tools to refill our energy tanks, sometimes we just arenāt opening the toolbox frequently enough.
Ann provides 3 tips to practicing great self-care.
1) Physical Activity ā Move your body in a way that is right for you. For Ann, this means taking 2 walks per day. (For me, this means breaking a sweat every morning by running or biking. Physical activity supports our physical health, and also enhances our brain function.)
2) Social Support ā Ann shares, āIt takes a village to raise a child, and I would argue it takes a village to support the parents that are supporting that child. Accept help when it is offered, and ask for help when you need it.ā When you have help use the space to practice good self-care to fill your energy tank.
3) A Creative Outlet ā Ann Shares, āCreative outlets take the focus away from worries, and brings our focus into that activity. There is research that shows that when our brain is actively engaged in a different activity (a hobby, etc.) it leaves us feeling more refreshed vs. vegging out on the couch.ā
Tips For Creating the Space for Self-Care:
Let others help you, and take a slice of that time to do something kind for yourself.
Ask for help. It is a great opportunity that you are giving someone else when you ask them to help ā lose the guilt about that.
If we need to find the time then look at where you are wasting the time. For how many hours are you watching TV, or on your phone?
Donāt be seduced into the that zoning out, find a creative activity.
Be intentional about creating the space in your day for self-care. (I block off the first 2 hours of my day to break a sweat, read, meditate)
Ann shares her personal story of falling into bad habits that resulted in poor sleep, anxiety, and gaining 100 lbs, then breaking the cycle, building positive self-care habits, and loosing those 100 lbs.
I thank Ann for coming on the podcast/ blog to share the what she has learned on her parenting journey, and for sharing her wealth of knowledge on self-care to help us live happy and healthy lives.
If you enjoyed this blog/ podcast Subscribe to our mailing list and get a new episode every week!
Love & Respect,
Eric
Resources:
Learn more about Ann's Books: Click Here
Contact Ann Douglas on Twitter: @anndouglas
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
In this weekās podcast/ blog our featured guest is Jeff Dobbin, Executive Director of Partners for Planning (P4P) in Toronto Ontario. Jeff and I discuss the idea of creating a culture of possibility for people with disabilities, why planning and intentionality is so important, the three most important building blocks to think about when getting started with planning, and the resources that P4P provides to help you create an incredible ordinary life.
P4P, an affiliate of PLAN BC and a member of the Ontario Independent Facilitation Network (OIFN), is a family driven organization that started in 2009 to create resources and community supports for families caring for a relative with a disability. They developed the P4P Planning Network, which is an online resource that was created for families across Ontario, but is accessed by people across the world!
The online tool provides valuable information on six key areas; life planning, building relationships, work and contribution, legal and financial planning (RDSP), creating a home of your own, and supports.
P4P is also very well known for the webcasts that they produce on these six areas where they engage in thoughtful discussions with experts, and take live questions from the audience. They host approximately 40 free webinars per year and you can check out their upcoming webinars on the planning network home page.
The P4P website also hosts a doc zone ā short documentaries profiling short video stories to help us learn what is possible and a professional services directory that can help you find professionals with disability expertise. P4P also published the book titled āSafe and Secureā, by Al Etmanski. They are currently updating Safe & Secure and it will be available on the Planning Network this fall.
All resources on the Planning Network are available at no cost.
The Culture of Possibility:
On the podcast, Jeff shares, āIf people that havenāt had a lot of opportunity to be involved in their community - for example (they have been) in segregated schools, or a congregated program the whole idea of participating fully as a citizen is an extreme idea for many people. So, one of the things we do at P4P is share stories of hope and possibility to help people realize that people with disabilities can contribute and live full and unique lives.ā (These stories are told on the webcasts, and in the doc zone.)
Planning Enables Possibility:
On the podcast Jeff shares, āWhat many families will tell us is that very little happens unless their family is intentionally involved in directing things. I have 3 kids, and they have more or less figured out their own lives ā they have their own jobs, and financial resources and they have moved out, but I am fully aware that doesnāt always happen when there is a disability involved. Also, with all the waitlists in Ontario you canāt sit back and wait for the government to provide all the supports you need. We also encourage families to be proactive because of the individualized funding that has become more available, and because of a move toward community based approaches. Families have an opportunity to create incredible things around work, contribution, and relationships.ā
3 Things to Consider When Starting Your Planning:
On the Podcast Jeff shares:
1) Create a Vision. Think about the life you would like to help your son or daughter create. What is important? What is possible? Donāt be afraid to dream.
2) Building Relationships. Who will be there for your sons and daughters when you can no longer care for them? Donāt be afraid to invite others into your life and your sonās and daughterās life. (Eric: Building relationships has had a huge impact on my sisterās life, but also my motherās life ā as she feels more supported. This is something that an independent facilitator or coach can support with. To learn more about independent facilitation you can listen to episode 3, āIndependent Facilitation and Support Circles Enriching livesā, and also check out the Ontario Independent Facilitator Network (OIFN) website.
3) Financial Resources. Access the financial resources that are available to you to support making your vision a reality. In Canada, you can open an RDSP if you are eligible for the disability tax credit (DTC). For example, if you open an RDSP at the age of 5, and you qualify for grants and bonds fully, at age 35 you would have a $350,000 asset and over a lifetime $1,000,000 asset. This type of asset is a life changer. Check out the P4P learning center to learn more about the RDSP.
I thank Jeff for coming on the podcast/ blog to share the message of creating a culture of possibility for people with disabilities, and for educating us on the resources the P4P team has created to help us live into the vision we create for ourselves and our loved ones.
If you enjoyed this blog/ podcast Subscribe to our mailing list and get a new episode every week!
Love & Respect,
Eric
Resources:
Partner's for Planning (P4P) Website: Click Here
Ontario Independent Facilitation Network (OIFN) Website: Click Here
The Art of Belonging (Ted Talks Inspired): Click Here
Contact Jeff Dobbin: jdobbin@p4p.ca
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
We welcome Janet Klees back to the podcast/ blog this week discuss building natural relationships, bio medical approaches to well-being, and the different approach her organization, Durham Association for Family Respite Services, takes to supporting families. Janet has been involved in the lives of people with disabilities, their families, and allies in community for over 30 years. She is the author of three books which are directly rooted in her experience with the Deohaeko Family Support Network, (We Come Bearing Gifts; Our Presence has Roots; Deohaeko Decades) and which are now sold around the world to present the unique options of this family group.
So how is Durham Association for Family Respite Services different? Janet explains that often a familyās first question is: āCan I pay you to do that for me?ā. Janetās answer is: āWell no. But I will teach you, and give you practical supports along the way.ā The organization believes so strongly in the approach of empowering individuals and families to make their own choices and keeping control of their lives that they are changing their name to the Durham Association for Family Resources and Supports.
The organization started 35 years ago as a family respite organization, and has since evolved to focus on full life planning, and helping families to think about what a good life is. The organization is grounded in Social Role Valorization (SRV) methodologies and some of the services they offer are listed here. I am listing these services for you because the organization frequently hosts free workshops that you can attend, and they are open to having a conversation with you ā even if you are from outside of the Durham Region.
- Facilitation and planning; helping people imagine what a good life is, creating a plan and putting the plan into action.
- Support recruitment; helping people recruit good support people, and providing a minimum a one day training to make sure they understand a SRV style of support.
- Administrative support; templates and forms to make hiring support easier.
- Free Training; workshops for families and supporters to learn what has worked to help people with disabilities create a good life.
- Family to family learning; families get together to talk about themes, such as housing and bio medical (non-medication) approaches.
- Brokering and financial supports; helping families by doing the administrative functions with individual funding dollars.
Building Context for Relationships
BCR is a Strategy that was figured out while working with the families of Deohaeko Family Support Network. The parents were very clear that there was need to have relationships in their sonās and daughterās lives. The group looked at what they were doing right, instead of what they were doing wrong, and this pattern emerged. What they noticed is that relationships had evolved between people with a disability, and people that do not have a (visible) disability.
The Deohaeko Family Support Network had taken a social role valorization (SRV) approach. Janet provides an overview of SRV:
āThe SRV framework says that human beings are very judgmental by nature. We make quick judgements about whether you are like me, or you are weird and different. We can take this human tendency and use it for the good by developing positive roles, such as the Blue Jays fan, the dog walker, etc.. This strategy has helped people create positive roles, and the roles are like a glue. In the role you end up meeting other people who see you in a positive way, and those people end up being open to a different kind relationship in your life. We donāt group people together ā when we group people with a disability all (other) people see is the disability. They donāt see the person for who they are and the positive roles they have. Often, families havenāt thought about their son or daughter as a contributing member. We havenāt thought about what son or daughterās job might be.ā
Janet provides a larger overview of SRV in this blog.
BCR: A 4-Part Strategy to Create Situations Were Relationships Are More Likely to Arise.
Janet explains:
1) Find ordinary places where people share your interest. Follow the interests of the person and think about where other people are that are interested in your interest. For example, if your interest is dogs other people interested in dogs are at: the dog park, dog training, walking dogs, dog clubs, stray dog associations, etc.. We are looking for typical and ordinary places in community, not places segregated for people with a disability.
2) Go to the same place frequently. To build relationships you need to be among the same people regularly. Pick one place, use your 1 to 1 support to support, and be there often (ex. Once per week).
3) Find a way to contribute. You want people to have a role in those places in community. So often people with a disability are just spectators. If you look at a music festival most are just spectators, but there are so many opportunities to have a role as a volunteer (ex. free samples, filling water bottles, assistant to the golf cart driver). This gives the person a role, and makes relationship easier.
4) Other people have to be present. Supporters are a bridge to relationships with others, and they need to play a role in facilitating relationships. The paid support person can be looked at as the friend. They are being paid and likely will not be there for that personās entire life.
BCR In Action:
On the podcast Janet shares several stories of how people have used the BCR strategy to build relationships. You can listen to the podcast to hear them all.
Paraphrasing from the podcast, Janet shares Johnathanās story:
āJohnathan has a small shredding business that he takes it into work places. He was working at the local police station, and really enjoyed it. He felt like he was important, and he felt like he belonged. That police station was closed down, but hey really valued Johnathan so he was invited to the big regional police station to continue his role. After 3 weeks at the regional police station Johnathan said he didnāt want to go anymore. They had put him in a backroom alone to do his shredding, and he didnāt have his relationships anymore. The shredding business was just a vehicle for relationships. When the relationships werenāt there, he no longer wanted to work. They talked to the police station, and Johnathan moved to a room where he was with people and he enjoyed his job again ā because of the relationships.ā
Bio- Medical (non-medical) Approaches
In a recent study, led by Yona Lunsky, psychologist at Centre for Addiction and Mental Healthfound that thousands of people with down syndrome, autism and other developmental disabilities are being prescribed anti-psychotic medication despite a lack of evidence that the drugs actually help them. (Reference: Toronto Star)
This highlights the importance of thinking about bio-medical approaches to well-being for people with disabilities. The Durham Association for Family Respite Services has started a family group to discuss this, and they are learning about the impacts of diet, exercise, and mindfulness (of supporters) as alternatives to medication. In my opinion, these are common sense approaches that can be explored at little cost that can get down to the root cause of symptoms or behaviors that a person is experiencing. Peter Marks of Conscious Care focuses in this area, and you can find additional resources on his website. We are hoping to have Peter on an upcoming episode to learn more about these approaches.
I thank Janet for coming onto the podcast and sharing her experience in helping people with disabilities to build relationships, and for getting us thinking about non-medical approaches to well-being.
If you enjoyed this blog/ podcast Subscribe to our mailing list and get a new episode every week!
Love & Respect,
Eric
Resources:
Purchase These Books to Learn More Lesson's from Janet Klees:
"We come bearing gifts" by Janet Klees
"Our Presence has roots" by Janet Klees
Free learning events In Durham Region: Click Here
Durham Association for Family Respite Services Monthly newsletter: Click Here
Housing website: imagininghome.ca
Peter Marks: Conscious Care
Contact Janet Klees: janet@legacies.ca
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
This weekās guest on Empowering Ability Podcast and Blog is Chris Woodhead, Group Director of Housing and Business Development for Dimensions UK. We talk about housing in the UK, and the approach Dimensions UK has for supporting people with learning disabilities and autism spectrum disorder (ASD) to find and create a home in Part 5/6 of the mini-series on housing for people with a disability.
Chris Woodhead has twenty years of experience in the housing, care and charity sectors in the UK. In 2016, Chris joined Dimensions UK to support the organization on their mission to provide high quality personalized support for people with learning disabilities and autism, helping them to be actively engaged with, and contribute to, their communities. Dimensions UK started about 30 years ago when institutions were closing and they currently support approximately 5,000 people across England and Whales. The approach to support Dimensions UK takes is to give people choice and control over their lives. For Dimensions UK it is about delivering personalized services by understanding the clientās needs so that they can deliver just enough support for them to achieve in their lives.
Housing in the UK
On the podcast Chris Woodhead shares:
The UK is a small and old country where land is at an absolute premium, this makes housing challenging. The UK culture is founded upon home ownership, whereas in the rest of Europe, rental is a more accepted norm. However, home ownership is difficult to achieve for most because housing prices are so high.
3 Main Ways to Have a Home:
1) Buy. For people that face a challenge to get into the employment market (many people with a disability) it is extremely difficult to realistically purchase a property. It is becoming an exclusive market that favors the wealthy.
2) Rent. The rental market is also prosperous in the UK and is becoming harder to access. It is incredibly difficult to find a rental in London ā there is an exclusive barrier unless you have high income.
3) The Social and Affordable Rented Market. This market was created for people that were on lower incomes. This worked really well from the 2nd world war until the mid 80ās when there was a housing build program, and there were a lot of solutions for people who needed them. The rates at which these units become available have slowed, people are having to wait an awful long time for housing. Demand far outstrips supply.
People with low income can apply for housing benefits (being replaced by a system called Universal credit), which is a type of rental subsidy. However, rentals are becoming increasingly difficult to find with the amount of funding provided. In some cases, people have had to move to different city were rents are cheaper, which is taking people out of the city they call home.
Summary: Expensive to buy, increasingly expensive to rent in private market, increasing demands on social affordable housing.
Dimensions Approach to Housing
Paraphrased from the Podcast Chris Woodhead shares:
Dimensions UKās aspiration is for people to have their own front door. Not all of Dimensions UKās accommodation is in line with this aspiration at this time. For example, some housing is larger scale accommodation with 10 people living in one large accommodation, but over time Dimensions UK looking to remodel for a smaller scale more personalized approach.
Housing and support are generally separate. Dimensions holds a core value that where you live is important to quality of life (health and wellbeing), but people should be able to choose who supports them. You shouldnāt have to move if you are unhappy with your support. There is a delineation between the tenancy agreement and the support contract. We operate around choice and control. If we get their housing right, and we get their support right then we hope they will continue to choose us.
Dimensions UK's 3 Approaches to Housing
1) Build new housing at the right price. We need to create properties that have an affordable rent so that people can use the rental subsidy to pay for housing. We need to find the right places to build, at the right place so people can afford the rents.
2) Remodel, refurbish or knock down and rebuild existing housing (to give people their own front door).
3) Signposting (guiding) people into the right accommodation for them. This can be with registered providers (public sector organizations that provide affordable housing), or into the private rental sector (called brokerage).
How do people work with you?
Very few people self-refer to Dimensions, this just isnāt how the system works in the UK. Most people are referred by the National Health Service (NHS) social services or a professional service practitioner. If living an independent life is right for an individual then they would likely be referred into us.
How do you find the right housing?
Contact and conversation between the individual, the family, friends and the social workers/ professionals that understand that person. āReferral to residenceā is my pet term for it.
1) Understand the person: what do they want to achieve? What facilities do they need nearby? What modifications to the property would be needed (sensory experience, items of safety)?, What location (near family and friends)?, What social activities do they want to be involved in? The individual, family, and friends are very involved in the process.
2) Work out what is important for that person to achieve and help them with a support package that considers the 8 domains in the Activate model. (See a description of Dimensions UK Activate Model at the end of the blog.)
3) The Dimensions Advisors look for accommodation (termed Brokerage). Dimensions has been nominated for awards several times for their Brokerage Service, learn more here.
Paraphrasing from the Podcast Chris shares this important insight:
āWhen an individualās wishes are reflected, it is the best chance for a successful transition is when we get it right the first time. I have been around long enough in the social care sector to see when support has failed, and it would be twice as hard the second time around. Confidence of the family plummets, and the fear and confidence of the person being supported is damaged too. Take the time, and put the thought into getting it right the first time. This can take a year to get this right, which can seem like a long time, but it isnāt if you compare to the experience of people living in an institution.ā
The New Activate Model
This is a new researched based model that was piloted with 24 homes of 1-8 people over a 2-year period. The model focuses on 8 different domains in each personās life:
1) Physical health and wellbeing
2) Communication and social interaction
3) The physical environment
4) Skills
5) Relationships
6) Service Staff
7) Service Management
8) Wider organizations
The two unexpected outcomes from the activate model research were 1) a 60% reduction in challenging behaviour, and 2) an increase in satisfaction for support staff. If you would like to learn more about the research, and watch the short videos visit the Dimensions UK website.
I thank Chris for coming onto the podcast and sharing his experience in housing, giving us an overview of the housing landscape in the UK, and for sharing lessons learned that can help us to empower people with disabilities to create a home of their own.
Iāve created a FREE workbook to help you create your vision of the best housing solution for you and to take the first steps toward implementing this solution. Click Here to download the free workbook. Our mini-series on housing for people with disabilities is continuing so go ahead and Subscribe to the mailing list to get all 6 episodes sent directly to your inbox!
Love & Respect,
Eric
Resources:
Dimensions UK Website: https://www.dimensions-uk.org/
Contact Dimensions UK: Click Here
Activate Model Research: Click Here
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
In my conversations with people with disabilities, their families, and supporters one of the biggest dreams they have is social acceptance. This blog and podcast gives steps we can take to start creating a more inclusive world for people with disabilities.
We are talking stigma in part 2 of our interview with Jackie Goldstein. Jackie is an observer, educator, author and speaker on community care support models. Jackie's book, 'Voices of Hope For Mental Illness; Not Against, With', shares the stories of many community care models across the world, and she also discusses Dr. Patrick Corriganās work on breaking down stigmas.
Miriam-Webster Dictionary defines stigma as: a set of negative and often unfair beliefs that a society or group of people have about something. Paraphrasing from the podcast Jackie Goldstein shares, āStigmas develop out of stereotypes. When people think of mental illness (and disability) we are afraid, and we think people with a mental illness will be a problem to take care of. We all develop stigma about peopleās skin colour, age, and country of origin, etc. What we do is we take limited information, and we apply it to an entire group. This isnāt fair to the individual.ā
Patrick Corrigan US based Author and advocate for people with mental illness, has conducted research studies on stigma and found that there are three different approaches we can take to break down stigma. Patrick Corrigan focuses on mental illness, but I believe there is a large overlap with disabilities in general.
The 3 Common Weapons to Break Stigma:
-
Protest. Making people aware of the cause/ situation. Example: March and demonstrate in the street, or write a letter to the editor.
-
Education. Provide information so that people can make informed decisions. Example: Listen to a podcast or watch a video to learn about a cause or situation.
-
Contact. Interaction with a person that you hold that stigma against. Example: Have a conversation with a person that has a mental illness.
Effectiveness of These Weapons:
In a 2002 publication of World Psychiatry, Patrick Corrigan and Amy Watson shared these findings in the article titled, āUnderstanding the impact of stigma on people with mental illnessā. āProtest is a reactive strategy; it attempts to diminish negative attitudes about mental illness, but fails to promote more positive attitudes that are supported by facts. Education provides information so that the public can make more informed decisions about mental illness. This approach to changing stigma has been most thoroughly examined by investigators. Research, for example, has suggested that persons who evince a better understanding of mental illness are less likely to endorse stigma and discrimination (17,19,52). Hence, the strategic provision of information about mental illness seems to lessen negative stereotypes. Several studies have shown that participation in education programs on mental illness led to improved attitudes about persons with these problems (22,53-56). Education programs are effective for a wide variety of participants, including college undergraduates, graduate students, adolescents, community residents, and persons with mental illness. Stigma is further diminished when members of the general public meet persons with mental illness who are able to hold down jobs or live as good neighbors in the community. Research has shown an inverse relationship between having contact with a person with mental illness and endorsing psychiatric stigma (54,57). Hence, opportunities for the public to meet persons with severe mental illness may discount stigma. Interpersonal contact is further enhanced when the general public is able to regularly interact with people with mental illness as peers.ā
These research findings highlight the importance of sharing our individual and family stories of disability to break down stigma. We can educate people about our disabilities through a blog, video, or story book. Or better yet, we can make contact with others and share our story in conversation. This creates a common understanding and builds connection. A story I've heard of a family that effectively broke down stigma for their daughter with a disability wrote a story book complete with pictures to share their daughter's journey with her classmates (she was in a regular classroom). The other kids in the class were so interested in the story they each started to take the book home to share the story with their parents. After learning the daughterās story, the other kids and parents were no longer scared of the disability, and started to interact with her more.
Patrick Corrigan also writes about self-stigma and how it negatively impacts us. You can read more about self-stigma in this interview with Patrick Corrigan by Aisha Jamil: Q&A with Dr. Patrick Corrigan: Public Disclosure Promotes Empowerment and Reduces Self-Stigma
Jackie leaves us with a brilliant quote from the podcast, āWhen you are all doing the same thing people forget about the disability and it isnāt noticed.ā
Our mini-series on housing for people with disabilities is continuing so go ahead and Subscribeto the mailing list to get all 6 episodes sent directly to your inbox!
Love & Respect,
Eric
Resources:
Email Jackie: jlgoldst@samford.edu
Jackie's Book, 'Voices of Hope for Mental Illness: Not Against, With' Click Here
Q&A with Dr. Patrick Corrigan: Public Disclosure Promotes Empowerment and Reduces Self-Stigma: Click Here
Dr. Patrick Corrigan, World Psychiatry publication: āUnderstanding the impact of stigma on people with mental illnessā
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
This is the story of Michael Mainlandās incredible ordinary life. Michael is 38 years old, works at Boston Pizza, has his own house, lives with a roommate and volunteers regularly. What may come as a surprise to some is that Michael has a developmental disability that caused him to become non-verbal and reduced fine motor skills as he grew older.
Michaelās Story in Starting in High School:
I had the opportunity to interview Michaelās mother, Alice Mainland, to learn Michaelās story and to learn how Michael has created his ordinary life.
In the 2 months before Michael graduated from high school, Michael and his family realized they had a problem; there would be nothing for Michael once school ended. One of his parents would have to stay home to support Michael, and the family would drop down to a single income. Alice started making phone calls to various support agencies, local government, and basically anyone with a phone number that might be able to help. The people she called were willing to help! With the support of a few agencies the family was able to piece together support for Michael and this allowed the family to stay a two-income family.
Alice shares, āYou donāt know what resources are available to you until you ask. ā
At 29, Michael had the opportunity to move out of home because of a conversation 4 -5 years earlier when Alice was searching for support for Michael.
Michaelās Life Today:
Michaelās family purchased a duplex where Michael lives with a roommate in one unit, and a supportive neighbor lives in the second unit who is available for overnight support. The family focused on creating a great home for the supportive neighbor, and this strategy has been effective at attracting and retaining long-term tenants.
The first few weeks Michael lived on his own was a worrisome time for Alice and her husband, however their worries didnāt become a reality.
During the week Michael lives at his own house, works at Boston Pizza, and volunteers at the local foodbank. On weekends, Michael gets to spend quality time with his parents on their rural property. Alice and Michael often run errands on the weekend in town and Michael has 2-3 times the number of people saying hello to him compared to his mother. This is a great sign that Michael is building relationships in his community.
Whatās next for the family?
Michaelās family is thinking about things like, who is going to take care of the house when Alice and her husband arenāt there? Who will help Michael make decisions? To ensure continuity in Michaelās future his family is looking at forming a micro-board. The purpose of the micro-board will be to help manage the home, and to help Michael make future decisions.
Lessons we can learn from Michael and his Family on living an ordinary life:
- Ask for help. Michaelās family reached out to anyone with a phone that might be able to help them. The people on the other end of the phone had good intentions and wanted to help.
- Environments where he can learn from his peers. Regular school classrooms (shop and gym for Michael's), working at Boston Pizza, volunteering, the Special Olympics.
- Opportunities to show off his skills. Michael loves to show off what he is good at from work to his recreation of horseback riding.
- Proloquo2Go. Michael is non-verbal the Pro lo to go app on his iPod empowers Michael to express himself more fully with others.
- Let go, and let in. Over time Michaelās parents have had to let go, which has allowed Michael to become his own person. The family has also had to allow other people to enter and be a part of Michaelās life. (Without interviewing them first!). At some point, someone else is going to have to be there for Michael other than his parents.
I thank Alice for sharing her familyās story. There are great insights and lessons that we can apply to our own situations.
Our mini-series on housing for people with disabilities is continuing so go ahead and Subscribeto the mailing list to get all 6 episodes sent directly to your inbox!
Love & Respect,
Eric
Resources:
Proloquo2Go - symbol-supported communication app - Click Here
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Hear the story of the Rougemount Housing Co-operative & the Deohaeko Support Network, learn what intentional community is and how to build it, learn the key factors that made Rougemount a success for people with a disability, and get a different perspective on creating a home for people with a disability.
This is part 4 of 6 of the mini-series on housing for people with a disability on the Empowering Ability podcast. In this episode, I bring you the story of Rougemount Co-operative Housing, and the Deohaeko Support Networkā a co-operative housing project led by families that has embodied diversity, inclusion and community since its inception in the mid 1980ās. I had the pleasure of visiting the community for a guided tour, and I sat down to interview 5 members of the community. I
Narrating the story of Rougemount and Deohaeko is Janet Klees. Janet has been involved in the lives of people with disabilities, their families, and allies in community for over 30 years. Until recently, she has been coordinator with the family-governed Deohaeko Support Network for over 20 years. She is the author of three books which are directly rooted in the Deohaeko experience, (We Come Bearing Gifts; Our Presence has Roots; Deohaeko Decades) and which are now sold around the world to present the unique options of this family group. Currently, Janet is the Executive Director with a family support organization, the Durham Association for Family Respite Services, with hopes of sharing her learning with a wider group of families in Durham Region and trying to affect larger scale supports and changes for families.
The Story of Rougemount and Deohaeko
Paraphrasing from the podcast Janet shares:
āIn the middle of crisis, there is always opportunity. In the 1980ās in the Greater Toronto Area there was a housing crisis, much like there is today, and a group of 7 families came together with the goal of creating ordinary life in ordinary neighborhoods for their sons and daughters with a developmental disability.
At the time, the Federal Government of Canada and Provincial Government of Ontario was funding Housing co-operatives where the people don't own the units, but there are permanent tenants as long as they follow the rules of the co-op set by the co-op board. It just so happens that Rougemount was the very last co-operative housing project that was funded by the Canadian Government.
The building was constructed with 105 units, where the 7 sons and daughters with a disability would live in this community. There are approximately 200 residents living at Rougemount and the residents were selected to represent the ethnic, demographic, and socioeconomic makeup of the surrounding region with no more than 10% of population having a disability, which is natural in this region (as it is in most areas).
The founding families of Rougemount then created the Deohaeko Support Network, which is a group of families that think about the natural and paid supports for their 7 sons and daughters in the community.ā
Intentional Community
There is a lot of discussion in the disability sector about what community is and the definitions can vary widely. The conversation can range from placing groups of people (such as people with a disability and seniors) together in a building to support each other, to a diverse group of individuals coming together to build relationships and share their gifts with each other.
Amazing community builder, Linda Dawe shares what she has learned about building an intentional community at Rougemount over the last 25 years:
āIntentional community is not something that you measure - it is something that you feel. It isn't a thing, it is in the hearts of people, and people embrace it to different degrees. One of the things that was important in creating the intentional community at Rougemount was the diversity in the residents that represented the actual community. Not placing groups of people together, such as seniors and people with disabilities. Intentional community at Rougemount started out as a grand thing, but simply it is just being in relationship with each other. People living well together. It requires effort, consciousness, and core people to hold the values of the community.
Janet Klees adds: āSimply put, community is being a good neighbor. At Rougemount people look for opportunities to be good neighbors and then talk about it, and hold up examples of it.
Intentional community isn't a building - it is a mindset! We can take the ideas with us, and many groups have. People have come into Rougemount and have seen how it works, and then brought it into neighborhoods with single family homes, and brought it into condo buildings. Rougemount is just an example of how it can work.
On the podcast, Rougemount residents and supporters Donna Mitchell (25 year resident, Deohaeko member), Tiffany Dawe (25 year resident, Deohaeko member), Shirley Brown (25 year resident), and Sorida Fonseca (Supporter to Tiffany Dawe) share their story of intentional community and community contributions. Through their voices it is evident that everyone is an equal contributor to this community. People with a disability arenāt viewed as a burden, they are valued as equals in the community that provided significant contributions just like everyone else.
Lessons from Deohaeko
5 Essential tips in shaping aspects of the community, invisible support, and making principled decisions that ensure that people are seen as ordinary neighbours sharing much common ground.
*As described by Janet Klees on the podcast
-
Diversity. Dedication to supporting, shaping, and holding a very typical community - less than 10% disability. It is the diversity of the co-op that makes it work. Diversity first before building intentional community.
-
Where people lived. The people with disabilities living at Rougemount live in apartments across the building, not segregated on one floor. This allowed people to be known by their individual identity, not just by the identity of their disability.
-
Support identified by their name, and deflected to person and their interests. We helped new support workers be thoughtful on how they introduced themselves. When support introduced themselves they 1) identified themselves by their name only, 2) directed the conversation back to the individual they were supporting, and 3) spoke to that individualās interest. (Example: āHi I am Sorida, I'm hanging out with Tiffany today. We are headed to the art gallery today - have you seen her art? You should come over to her apartment sometime and see her art.ā)
-
Discouraged segregated activities. When new committees were starting we had lots of conversation about who would participate. We thought about who from Deohaeko would participate in committees and chose not to have too many people with a disability on one committee because it then becomes difficult for people to build relationships.
-
No shared support. The reason is that the families didn't want people to see the same supporter with different people with disabilities because then people look at people with disabilities as all the same. Rather than saying different people need different kinds of support. Even in a crisis support wasnāt grouped. We figured different layers of support that would come forward in these situation. We really focused on people having their own unique and individual lives.
*All of this is to focus on creating natural relationships, and it works.
Creating Housing Solutions Today
Janet has carried the thinking from her work with Deohaeko forward into her work today with Durham Association for Family Respite Services.
Janet shares:
"Housing is a community issue, not a disability issue. In our most recent housing project, we partnered with Brockville and District Association for Community Involvement on a housing project called, āHousing is a Community Issueā. We asked families who were interested in housing to join us in discovering housing solutions together and 35 families showed up. This is incredible because we told the families up front that we donāt have any money to give. It shows how understanding families are that they are going to be part of the solution.
Even in this housing crisis, people are still finding housing. With our project, we are thinking about what are the ways that people are finding to build, buy, rent, and to figure out housing. Then asking, āwhy can't these ways fit families that are looking for housing?ā
This is not a Ministry of Community and Social Services (MCSS) issue, it belongs with housing. This is an affordability issue, not a disability issue. If people need renovations it is a cost issue. We need to ally ourselves with all the people that are struggling for housing. There are organizations like Habitat for Humanity, and Options for Homes that we can ally with. If MCSS is involved in housing they build a service, not a home. Families only have to think about their own son or daughter, and think about works best.ā
In a recent housing forum in Durham Region, 70 families gathered to discuss person centered housing for their sons and daughters. The group compiled a list of 7 recommendations for the Government of Ontario, and for all of us to think about as we work toward creating a good life for people with disabilities.
-
Home, housing and support are 3 different things and bust thought of separately.
-
Most housing challenges are affordability, not disability.
-
People with disability contribute to their communities, they are not a burden.
4.Getting good housing and support doesn't mean taking away the individualās control of their life
5.Providing renovation dollars allows families to be creative with their current home today (stabilize current situation), and allows for flexible housing in the future.
-
Stop funding congregated mega projects for people with disabilities, and disabilities / seniors. Commit to typical housing options and neighbourhoods.
-
Where there are Families that are willing to create a home in community the government needs to support with resources. These are cheapest, most effective models, and they are currently the least funded.
There are so many things I am taking away from my time with Janet, Linda, Tiffany, Shirley, Donna, and Sorida and grateful to them for sharing their experiences, and what they have learned.
The Key Takeaways for me are:
-
Building Intentional Community starts with rich diversity and upholding neighbourly values.
-
Fostering Intentional Community requires us to get a common understanding of each other, and through that understanding building trust and respect. From here we can show love to each other in small little ways, and uphold those acts of love.
-
Housing and support are best viewed as separate.
-
Be intentional in creating opportunities for people with disabilities to build relationship. Do not group them in housing or support.
-
As families, we need be a part of the solution. Design our lives, take control, and ask for help. We assume that someone is going to take care of things for us, but that someone is never going to come.
To end, here is a beautiful quote from community builder, Linda Dawe āEveryone needs good housing. Once they have good housing they are able to experience good things in their life.ā
Our mini-series on housing for people with disabilities is continuing so go ahead and Subscribeto the mailing list to get all 6 episodes sent directly to your inbox!
Love & Respect,
Eric
Resources:
Purchase These Books to Learn More Lesson's from Deohaeko:
"We come bearing gifts" by Janet Klees
"Our Presence has roots" by Janet Klees
Learn more about Deohaeko: Click Here
Learning events In Durham Region: Click Here
Book a study tour to learn about Rougemount and Deohaeko: Click Here
Contact Janet Klees: janet@legacies.ca
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Founder of online social media platform My Disability Matters, Dale Reardon, comes on the podcast to discuss this new platform for people with disabilities.
Dale, now 47, went blind at the age of 17 from Leber hereditary optic neuropathy, which is an inherited form of vision loss that usually begins in a person's teens or twenties. Dale has had an abundant career as a lawyer, tourist operator, and even worked for the Australia tax office before becoming a technology entrepreneur alongside his wife and creating the My Disability Matters platform.
The My Disability Matters Platform
My Disability Matters initially started as a news publishing and republishing platform for blogs of disabled people. The idea came when Dale saw a growing distrust from the disability community in disability news publisher, The Mighty. Dale says, The Mighty was publishing stories that exploited peopleās disability as inspiration, also known as inspiration porn or ableism. Dale and his wife then evolved the news publishing idea into a social media platform for people with disabilities.
Paraphrasing from the podcast, āDale found that discussing disability issues on existing social networks can feel unsafe because of the bullying and trolling that goes on. The My Disability Matters social platform provides a safe, supportive environment where disability issues can be discussed without fear. Living with disability can be lonely and isolating because of barriers such as transportation, and an online platform allows isolated people to form friendships online. Dale shares, when he was losing his eye sight a family with father and son who were blind took him under their wing and helped him to see that he would still be able to live a normal life. Dale hopes to create the space for many of these connections to happen for people with disabilities.ā
At the date of publishing this blog and podcast, 1,650 people across the world so far are using the My Disability Matters platform. I encourage you to check out the platform at www.mydisabilitymatters.club. Create your free account, and start to build relationships with like-minded people.
Australiaās National Disability Insurance Scheme (NDIS)
On the podcast, Dale provides an overview of Australiaās National Disability Insurance Scheme (NDIS), which is a new way of providing support to people with disabilities in Australia since 2013.
Paraphrasing from the podcast Dale explains, āThe NDIS is designed to give money to people who have a severe and profound disability to take care of their needs. Up until 2013, Australia used block funding (the government provided grants to organizations), and the organizations then served as many people as they could. In simple terms with the NDIS, a person with a disability will have a meeting with the government to determine how much help they need, they are then provided with the funding needed to support their disability, and they are free to hire the staff that needed without being bound to a support organization. When the NDIS roll out is complete in 2019, 460,000 people with the most severe disabilities will be covered under the insurance scheme. On the whole, there is probably about 4 million people in Australia with a disability. There are growing pains, but the hope is that the NDIS will revolutionize disability care in Australia."
To learn more about how the NDIS works, how it is helping people with a disability, and the associated growing pains tune into the podcast.
Our mini-series on housing for people with disabilities is continuing so go ahead and Subscribeto the mailing list to get all 6 episodes sent directly to your inbox!
Love & Respect,
Eric
Resources:
My Disability Matters Social Platform:Create your free account - Click Here!
My Disability Matters News: www.mydisabilitymatters.news
Contact Dale Reardon: dale@mydisabilitymatters.club
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
David Roche calls himself an inspirational humorist, who has a facial difference. The word inspiration can be viewed as a dirty word in the disability world, as many stories are told and consumed as 'inspiration porn' -inspiration calling on the bias of a person's disability. David however, provides authentic inspiration. We are automatically drawn to the difference David wears on his face, and he uses this difference to inspire us to look within ourselves to find our own inner beauty and strength.
On the Empowering Ability Podcast David tells us that, every time without fail when he orders his old-fashioned donut, and a double double coffee from Tim Hortons the server brings him back a cup of tea and no donut. When meeting someone for the first time they are completely absorbed in the visual. So absorbed that they donāt ever hear him.
When David speaks to audiences and meets people for the first time he encourages them to ask about his facial difference. He has found it as a useful strategy for him to get it out of the way. David was born with part of his mandible (lower jaw) missing, and visible swollen veins on the side of his face. By calling out his difference it allows him to clear out the space for himself, and allows him to be vulnerable and authentic.
Paraphrasing from the podcast David shares, āI have learned that everyone feels disfigured to some degree. Everyone caries a fear inside them that something is wrong with ourselves. In our western culture, everything is linked to our appearance, and women have to carry that more than men do. We all carry a little spot inside of us where fear and doubt resides - if we donāt deal with that then we are prey for the predators. I have learned how to deal with that feeling inside myself. I have learned some life lessons that you need to know, because if you donāt deal with that fear that is when the predators get you.ā
For David, his face is his gift. He's had to find his beauty inside, and he feels that it is his purpose to help other people find their inner beauty.
David offers this advice to find your inner beauty:
āWhen you look in the mirror that is not you, that is how other people see you. So when you look in the mirror do this: donāt go looking for all your little flaws, and all the things that are wrong with you. Look in your eyes and love yourself, and smile and say good morning, and say how wonderful you are. If you look in the mirror and think that is you, youāre wrong. Because the real you is, as Jean Vanier says, love and community. The real you comes out with other people, and it comes out in the form of love. You have to find your inner George Clooney. So when you look in the mirror every morning lower your voice and say, āHey looking good this morning!āā
David and his wife do a program called, āLove At Second Sightā about appearance and acceptance and you can watch their short film at loveatsecondsight.org. Also, if you are interested in learning more about David and his story pick up his book, āThe Church of 80% Sincerityā.
David leaves us with his favorite quote from Jean Vanier to reflect on:
"There is a revolution going on. We are beginning to realize that everyone, every human being is important. We are beginning to see that every human being is beautiful. At the heart of this revolution are not the powerful, the wealthy or intelligent. It is people with disabilities who are showing us what is important - love, community and the freedom to be ourselves." -Jean Vanier
Our mini-series on housing for people with disabilities is continuing so go ahead and Subscribeto the mailing list to get all 6 episodes sent directly to your inbox!
Love & Respect,
Eric
Resources:
Website:http://www.davidroche.com/
Contact David Roche: Click Here
David's Book: Click Here
David's Film: loveatsecondsight.org
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
The Anthony Bourdain of the community care world, Jackie Goldstein, is our guest this week. Jackie is an observer, educator, author and speaker on community care support models. Jackie's book, 'Voices of Hope For Mental Illness; Not Against, With', shares the stories of many community care models across the United States, and the story of Geel Belgium. On this podcast, we discuss the story of Geel Belgium, Broadway Community Housing (BCH), and Gould Farm.
Geel Belgium
The story of the Geel Belgium's foster family community care model started as far back as the 13th century, and it still continues today! This makes Geel one of the oldest and largest community care models in the world. The foster family system evolved in Geel from the legend of St. Dymphna; the St. of loss causes. You can hear Jackie tell the fascinating legend of St. Dymphna on the podcast.
Paraphrasing from the podcast Jackie explains, "In the Middle ages, the Church is where people went to be healed. Word spread that there was a St. in Belgium that could heal people, and people started coming into Geel to be healed. Pilgrims started with 9 days of praying, and sometimes this worked because of a placebo effect. If praying didn't cure their illness, the church asked the towns people to take these pilgrims into their homes. Geel was an agricultural community so there was a deal made between the town and the pilgrims that they would work on the farm, and in exchange live in the home. This became the model, and the community thought of themselves of a healing community. It was a source of pride, there was no stigma. If a Geel resident didn't have a boarder, people wondered why - where you not good enough? It is not the way we think of a system starting today, this system evolved. However, the foster family system in Geel teaches us that by understanding the needs of the individual, and the resources of the community we can find solutions."
Broadway Housing Communities
Ellen Baxter was an observer of the Geel foster family model and saw the need of individuals in New York so she raised funds, and started Broadway Housing Communities (BHC). Her first housing initiative opened in 1986 for 55 homeless single adults. Shortly after in 1990 BHC opened an apartment for homeless families and adults (many of which had a mental illness). Jackie explains " At the time this was against societal norms, people thought that kids shouldn't be exposed to people with mental illness. However, the model proved to be effective. This model also fostered the creation of community by offering everything that was available in the building to the neighbourhood. In a more recent project, BHC has focused on poverty because homelessness had become more of a problem. Residents were selected into the building on a lottery system - some based on poverty, and some based on mental illness."
Gould Farm
Beginning in the early 1900's Mr. Gould opened his working farm to people in need, starting with people that were recovering from surgery and evolving into accepting people with disabilities. Jackie had the opportunity to stay at Gould Farm and she shares " Gould Farm is a self sustaining farm, now primarily hosting guests with an intellectual disability. Everyone who works at Gould Farm lives at Gould Farm. This includes the staff and their families, even their kids. It is hard to tell who is a guest and who is staff. It is a community."
What Jackie Has Learned
Jackie shares that the subtitle of her book, 'Not against, with', comes from the Robert Frost quote, "Always fall in with what you are asked to accept, take what is given, and make it over your way. My aim in life is always been to hold my own with whatever is going. Not against, with."
What Jackie has learned through her observations of many communities is that you can take any community and you can assume that there is a group of people that need support. You can then ask two questions:
What kind of support do they need? (The individual, not a group of people)
What resources are available in the community?
Then you take the 'Not against, with' approach to find the best solution for the individual by working with individual's abilities, and not ignoring their disability.
I thank Jackie for coming onto the podcast and sharing her observations and insights on community care, and creating a home for people with a mental illness and disability. If you are interested in learning more about community care models I recommend that you pick up Jackie's book, she would also be happy to speak to your event.
Our mini-series on housing for people with disabilities is continuing so go ahead and Subscribe to the mailing list to get all 6 episodes sent directly to your inbox!
Love & Respect,
Eric
Resources:
Email Jackie: jlgoldst@samford.edu
Jackie's Book, 'Voices of Hope for Mental Illness: Not Against, With'
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Al Etmanski and I talk about how to bring social change to life by thinking and acting like a movement, the Registered Disability Savings Plan (RDSP), basic income for people with a disability, and the current state of the family and individual arms of the disability movement.
Think and Act Like a Movement
Al is the author of the book, āImpact: Six Patters to Spread Your Social Innovationā, and Al and I discuss the first pattern; think and act like a movement.
Paraphrasing from the podcast, Al tells us:
āIt isn't about creating your own movement - we are all already part of many movementsā¦. the question is which ones do we want to bring our energy and resources to. Thinking an acting like a movement is important because big ideas only come into reality when others feel that they have something in common. Movements create a popular support, and the cultural receptivity that emboldens politicians (enables the politician to make bold decisions). Most of the time politicians will ignore your proposals unless they pick up that there is a large degree of receptivity in the public. This is what makes movements more powerful than organizations. Movements don't happen overnight, they take time and become long term trends.ā
An example of thinking an acting like a movement is how PLAN BC, an organization Al Co-Founded, led the charge to bring the RDSP to life. The RDSP is a savings plan for Canadians with a disability - enabling people with a disability to save for the future in a way that does not impact eligibility for government supported programs. The idea started at PLAN, but they realized they wouldn't be able to lobby for this change on their own; they had to bring in other people. In order to address the broader initiative, they created alliances with organizations, families, strangers and adversaries and tried to get as many people moving in the same direction to achieve the ultimate end outcome ā financial security for people with a disability in Canada.
How do we think and act like a movement?
Al Suggests:
ā1) We need to calculate the movements you are already part of.
2) Identify the players that your movement touches on.
3) Of those players, identify those that are aligned with your values, and that you would want to work with.
4) Then determine how can you contribute, or how can your organization contribute. If we start with 1 or 2 % of our time and resources you can make a difference.
I got a ton of value from Alās book āImpact: Six Patters to Spread Your Social Innovationā. I highly recommend you get yourself a copy if you are looking for a guidebook to bringing your social innovation to life.
The RDSP
I havenāt yet covered the RDSP on the podcast, so Al provides a high-level overview of how the RDSP works, and the benefits it provides. To sign up for an RDSP you must be eligible for the Disability Tax Credit (DTC). If you are eligible, or think you might be eligible for the DTC I highly recommend that you consider opening an RDSP to support securing your, or your loved oneās financial future. I will be covering the RDSP in greater detail in a future episode ā so for now you can learn more by listening to this podcast with Al Etmanski, or by reading more from the governmentās website.
The Family and Individual Arms of the Disability Movement
I ask Al to give his perspective on the current state of the disability movement, and he suggested that there many arms of the disability movement and to simplify it for our conversation we discuss the family and the individual arms of the disability movement.
Current State of The Family Arm
Paraphrasing from the podcast, Al tells us:
āThe family arm isn't as strong as it used to be - I don't see the representation from younger family members that there used to be there 20 years ago. (Al hypothesizes that) this could be because the existing players aren't reaching out, or the agenda is not relevant to younger families. The medium of expression has changed dramatically and it has me wondering where the current limitations of the family arm are currently related to our adaptation into the social media world.ā
Current State of Individual Arm
Paraphrasing from the podcast, Al tells us:
āThere is a huge shift with how people with disabilities see themselves, and see themselves in the world. Al coins this as an āevolution of consciousnessā. I come from and era where we were asking people to forget about their disability, and to push it in the background. We were asking society not to notice the disability. I am seeing an evolution of consciousness that seems to be comparable to the rising of women in the womanās rights movement, and minorities in the civil rights movement. People (with disabilities) are taking back the language and beginning to describe their situations the way they are experiencing them. I've begun to see this everywhere, and I think this is so significant. I think it demands that we think about what role we have as advocates, supporters, and family members to make sure that we don't get in the way.ā
On the podcast, Al shares the moment he realized this evolution of consciousness in a story as a father with his daughter Liz. Liz acknowledged her disability during a spoken word performance in front of an audience and Al states, " It was both the real deal, and it was no big deal." The full story is available on the podcast.
There are also many groups of people that have emerged across Canada that are interpreters of this evolution, such as the organization Exeko. Exeko provides āintellectual mediationā with the assumption of intellectual competence, and their job is to make sure others understand what people with a disability are saying, untampered.
Basic Income
Al is currently working on the basic income movement to provide a guaranteed basic income for people with a disability in British Columbia, Canada. As a comparison, think guaranteed income for seniors (ex. Canada Pension Plan). The idea is to end the current welfare framework that has restrictions and penalizes people, and to provide a guaranteed basic monthly income with no restrictions, or requirements for reporting. Any additional income would be additive and be taxed accordingly, but would not disqualify you from receiving the basic income. If you are interested in learning more, or contributing to this movement you can check out The Canadian Basic Income Network.
My sincere gratitude goes out to Al for sharing his insights with us, and for the work he has done and is doing to make the world a better place. Thank you, Al!
I couldnāt cover all the content from the podcast in this blog ā there was just so much rich content! I consider this podcast a āmust listen toā for the opportunity learn from one of the most insightful and influential people in the social innovation and disability space. Also on the podcast, Al gives us a sneak peek inside the current book he is working on. Listen to the podcast to find out more!
Our mini-series on housing for people with disabilities is continuing so go ahead and Subscribeto the mailing list to get all 6 episodes sent directly to your inbox!
Love & Respect,
Eric
Resources:
Website: aletmanski.com
Al Etmanski's Blog: http://aletmanski.com/blog/
(Writes about issues for people who want to make the world a better place.)
Article: 'The 'C' In Canada Stands for Caring' Vickie Cammack Click Here
Alās book āImpact: Six Patters to Spread Your Social Innovationā
Al's Blog referencing King Arthurās Night (āEvolution of Conciousnessā) http://aletmanski.com/impact/artists-arent-ahead-of-their-time/
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
I ask Keenan, āWhat is the most common question you get asked in your role as Co-leader at LiveWorkPlay?ā. Keenan replies āHousing ā what should we do in housing?ā - At the end of the podcast recording in Episode 1; āThe movement to individualized support, and accessing developmental support servicesā, In this weekās podcast I share unreleased audio from our very first guest on the podcast, Keenan Wellar. Keenan is the innovative Co-founder and Co-leader of LiveWorkPlay, a developmental service agency that works to facilitate community connections and relationships in Ottawa, ON.
When answering this question, Keenan takes a coach approach by asking a lot of questions in order to draw out the best answer for that family. A couple of questions that Keenan will ask are; Where do most citizens tend to live in your community? (Letās start there) What are the barriers to those outcomes (living in 'ordinary' housing) ?
These are great questions to get you thinking about the best solution for you and your family. To help guide your thinking process Iāve created a FREE workbook to help you create your vision of the best housing solution for you, and to take the first steps toward implementing your solution. Click Here to download the free workbook.
Keenan shares, "If we just look at the systemic one size fits all housing solution then we are closing a lot of doors." I agree. We also might not be creating an environment for a person with a disability to flourish by taking a one size fits all approach. Keenan also touches on the problem of isolation and loneliness for people with a disability, and how important it is to work on developing unpaid relationships. Keenan and I dive deep into building social capital topic with Al Condeluci in Episode 6; āSocial Capital; Building Relationships for Improved Well-Beingā Take a listen to this podcast to get a different perspective on creating the best home for you and your loved one. Our mini-series on housing for people with disabilities is continuing so go ahead and Subscribeto the mailing list to get all 6 episodes sent directly to your inbox!
Love & Respect,
Eric
How to Contact Keenan Wellar and LiveWorkPlay:
Website: http://liveworkplay.ca/
Phone: 613-702-0332
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Guest Ron Pruessen, father to Caroline, who has a developmental disability, member of Opportunities Mississauga, and Chair of the Ontario Developmental Services Housing Task Force. In this episode, Ron has an open conversation with me as a father and gives his personal perspective on housing for people with a developmental disability, rather than speaking for organizations and projects he is involved with.
This is Part 2 of a 6 part mini-series on housing for people with disabilities. We are exploring the housing issue for people with disabilities, new innovative ideas, and success stories from around the globe. Subscribe to the mailing list to get all 6 episodes sent directly to your inbox!
Ron has been advocating for people with disabilities for the last 20 years. He was moved to do something when he, and his wife Alice, found that there werenāt many opportunities for their daughter Caroline, now 40, when she graduated high school. Ron got involved in a family group called Opportunities Mississauga, which now represents about 200 families. Currently, Ron sits at the Partnership Table with the Ontario Provincial Government to voice what is needed in terms of support for people (and families) with a developmental disability. This led to the creation of the Ontario Developmental Services Housing Task Force (Housing Task Force), in 2015, to begin addressing the housing crisis for people with a developmental disability in Ontario. Ron currently serves as the Chair for the Housing Task Force.
As explained in Part 1 of the mini-series on housing, āCreating a Home, with Marg McLeanā (Listen Here) ā there are 12,000 to 17,000 people in Ontario waiting for housing and the list is growing. I recommend you check out Part 1 as Marg and I explore the elements of creating a home, and I provide a Free Workbook to help guide you through creating your vision.
The Housing Task Force
The Housing Task Force was created by the Ontario Provincial Government, but it is not operated by the government. It is operated at armās length by individuals that need support, families, and members support agencies. It was evident that in the past the government wasn't looking outside the box, so the focus has been placed on finding creative solutions. The Housing Task Force was given $3MM in annualized funding, which has funded 18 pilot projects from the 200 proposals submitted. The Housing Task Force is now working closely with the people in the pilot projects to learn what is working, and what isnāt.
Personally, I love that the Ontario Government took an entrepreneurial approach to the problem, and allowed the Housing Task Force to test different ideas. The next challenge will be to fund and scale the housing models that have been proven to be effective in providing people a good life.
Ron shares that in his opinion it is the Governmentās responsibility to provide housing and a good life for people with disabilities, just like they do for senior citizens. The Ontario Government didnāt do anything for a long time, but the current government deserves credit for the approach it is taking. However, Ron says there is much more work to be done.
I ask Ron, as a father and someone that is involved with a family group and the housing task force what have you learned along the journey on housing?
Ron shares that for a long time the government has had a limited menu (of housing options). There has been a lot of wonderful ideas at the grassroots level that haven't had the opportunity to come to life. Individuals have been doing the visioning, and they see the possibilities out there.
The most significant example of creativity Ron has seen in is building partnerships. The community can provide the best solutions. Not just because you can mobilize financial resources, but also because you can develop a wealth of opportunities (educational, social, employment), and this is incredibly important. The house (or home) is an important part of the picture, but it isn't the whole solution. Community connections improve quality of life, but the government can't do this, we have to do this.
Examples of partnering with community:
1) Mobilizing resources to launch a project with local governments; cities, towns, and municipalities. (Ex. affordable housing programs and agendas.)
2) Organizations like Habitat for Humanity and building developers contributing resources.
3) Community colleges participating in programs that where there are opportunities to develop friendships.
I ask Ron, knowing what you know now - what are the first steps you would take to put a housing solution in place?
Ron replied, we want to turn to the government but, that isn't a very effective because the government has a lot of demands on it (education, infrastructure, etc.), and there isn't enough money.
Don't just wait and sit around, be proactive, and start community conversations.
What we should have done is build the community connections and relationships that have been effective; local government, social clubs, churches, local agencies, organizations. This is where we started a long time ago, and this is where we are going back to.
I ask Ron, when should you start designing a life with your son or daughter with a disability?
Ron suggested parents should start having these family conversations in the early teenage years. At this age you start to learn who this person is, what they want to contribute, and what their gifts are.
When it comes to housing, it is a long process. Caroline (Ronās daughter) went on the residential housing support waitlist when she was 16, and they thought it would take about 10 years for her to find a home. 22 years later Caroline was still waiting for an opportunity to emerge.
The simple message is: the earlier, the better.
Tune into the podcast to hear more from Ron about building community, outside of the box thinking, building a whole life, and building relationships.
Ron strongly urges us to keep the pressure on the Government, keep pushing. Talk to your member of parliament, and make it clear that this is a problem. Help these people empathize with your lived experience, because they haven't lived the life. They need to hear our stories.
I thank Ron for coming on the podcast to share his experience and perspective on housing for people with a disability.
Iāve created a FREE workbook to help you create your vision of the best housing solution for you, and to take the first steps toward implementing your solution. Click Here to download the free workbook.
Love & Respect,
Eric
How to Contact Ron Pruessen:
Facebook Page: Click Here
Podcast Resources:
P4P Booklet on Housing Task Force Projects: Click Here
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
This weekās guest on the Empowering Ability Podcast is Win Kelly Charles. Win was Born with Cerebral Palsy (CP), and has defied the odds by becoming an author, the host of the Butterflies of Wisdom podcast, a competitor in the Kona IronMan Triathlon, CEO of her own jewelry design company, and motivational speaker. Win Charles truly is an inspiration to many.
Win is a disability advocate, and openly shares her journey as a person with CP. On the podcast, Win tells us that CP occurs at birth, and isn't genetic (so it isnāt something you will pass on). For Win CP impacts both sides of body; her left hand is weak, and her right leg is weak, and she has undergone 100+ surgeries.
Win is an extremely resilient person, so I ask her; what is the mindset that you carry to be the person that you are?
Win shares that she is ā..not named Win for nothing.ā Winās mother named her after her grandmother, whoās name was Winaphin. From the tone in Winās voice when sharing this story, I could hear the sense of pride and motivation this gives her.
Second, Win was treated like she didnāt have a disability by her parents. Winās parents put her in the regular classroom, where she was treated as an equal and was able to participate in the same programming as everyone else. From her experience, Win suggests that if possible parents should put their kids in regular classrooms.
The approach that Win takes in her life is to "ā¦ā¦.Always, Always, Always, look outside the box.... The solution is never cookie cutter." Win brings out a great point here as many families and people with a disability are constantly facing road blocks, and have to look for different solutions. Look outside the box, as win suggests, donāt take no or the status quo for an answer, be creative and find a different path, find your path!
I ask Win who her mentors were in her life that have made a big impact on her?
Win shares that there were a couple of educators who she views as mentors, but the biggest mentors in her life were her Parents. Win again drives home the point that her parents raising her as if she didn't have a disability empowered her to become the woman that she is today.
Take a listen to the podcast to hear our discussion on inclusion, how Win became an author and a podcaster, as well as the messages Win shares on disability advocacy.
If you want to learn more about Winās journey, I recommend you pick up her book āI Win; Hope and life as a disabled woman living in a not disabled worldā on Amazon.
Win tours the country, speaking to schools and institutions to raise awareness about cerebral palsy, and living a full life no matter what holds you back. It was a pleasure having Win on the podcast, and if you want to hear more from Win you can Sign up for Winās newsletter to stay updated on new releases and appearances.
Love & Respect,
Eric
How to Contact Win Kelly Charles:
Twitter: @WinKellyCharles
Win's Art: Click Here
Podcast: Butterflies of Wisdom
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
Mitch, a high school senior, started to explore part-time employment in his community and was continually turned away, due to what Mitch thinks was his disability. Mitch and his mom, Charity, then teamed up to make Mitch's dream a reality and created 'Mitch and Mama's Coffee Bar'.
This week's guests on the Empowering Ability Podcast are mother and son, Charity Hilson and Mitch Dale, who tell their story of making Mitch's dream of owning a coffee shop come to life. Danny Steeves Eby, fellow entrepreneur from Episode 8 of the podcast joins us as a co-host on this episode.
Subscribe to the Empowering Ability mailing list to get more great stories like this one sent directly to your inbox!
Mitch and Charity were pushed by their friends and family to start, and with a small amount of capital they opened up a coffee bar inside an existing operating store in their hometown of Listowel, ON. The coffee bar currently employs Mitch and Charity, and provides volunteer opportunities to people in the community who have a disability. They have a grand vision of having their own store, with couches and tables, but the most important thing was for the mother and son team was to get started, so they downsized their dream (for now).
Mitch shares that having a coffee shop is his dream because he is a people person, and he loves to be around people. Every cup of coffee comes with a free hug from Mitch, and he thinks it keeps many customers coming back. I was lucky enough to get 3 hugs from Mitch, and for me the hugs were worth much more than the price of a cup of coffee. Mitch and Charity share that most people in their community have embraced their new venture, and are even offering to help find funding.
Charity provides advice to other families looking to start their own venture, "Really listen to what your child is wanting, it is easy to take over their dream..... (and) think about the best business to start that utilizes their gifts. Start slow, don't get discouraged, don't give up, use your resources. It is very hard to ask for help, but people really want to help you. If you just ask for help things run a lot smoother."
Charity also shares, "I'd like families to know if I can do it, anyone can.... I am a single mother with 3 kids and 2 jobs."
This is a great story of creating an incredible ordinary life for Mitch, Charity, and other people with a disability. Mitch and Mama's is also helping to change societal perceptions for people with a disability, by providing the opportunity to show their gifts through employment in the community. Stop by Mitch and Mama's to get a coffee, and a hug from Mitch - you will understand what I mean.
There are a lot of ideas in the grave yard. Bringing an idea to life and creating something takes a lot of courage. Just take the first step, start! Then enjoy the journey.
I'd like to thank Mitch and Charity for coming on the podcast to share their story, and lessons learned from starting their own venture. It was a pleasure interviewing them and I am excited for my next trip back to Mitch and Mamas. I'd also like to thank my co-host for this episode, Danny Steeves Eby, for his positivity, contagious laugh, and insightful questions.
Love & Respect,
Eric
How to Contact Mitch & Mama's:
Email: mitchandmamas@gmail.com
Phone: 519-291-7235
Website: http://www.mitchandmamascoffeebar.com/
Facebook: Click Here
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
The Empowering Ability Podcast is available on iTunes and various other apps so that you can listen while on the go from your smartphone!
Click Here To Listen on iTunes
This is Part 1 of a 6 part mini-series on housing for people with disabilities. We are exploring the housing issue for people with disabilities, new innovative ideas, and success stories from around the globe. Subscribe to the mailing list to get all 6 episodes sent directly to your inbox!
This week's guest on the Empowering Ability Podcast is Marg McLean, Executive Director of Community Living St. Marys. Marg and the Community Living St. Marys team have been helping people with a disability create their home, and support solutions since the 1980's when people were leaving institutions.
The Problem:
As of 2016, the Ontario Ministry of Community and Social Services was supporting approximately 18,000 people with a developmental disability in group homes and other supported living, and an additional 9,700 people were on a waiting list for residential supports. So, the reported demand for residential housing support is over 50% greater than the supply. The demand is likely higher than reported because it obviously doesnāt include people who have not registered for the list. We will be exploring this problem in other parts of the world as the housing mini-series continues. Reference: (The Toronto Star, 2016)
This is a massive line to wait in as supply of residential homes is increasing at a much slower pace than the demand for people with a developmental disability in need of housing.
So, should families be planning their own housing solution?
Marg shares that people are going on the waitlist without thinking, talking, and planning what an ideal home looks like for them. (Note: This is exactly what my family did at the start of our housing search for my sister.) What works well is for families to come up with a vision of what would be a good home in community.
When thinking about your home, there are 4 questions you need to answer:
Iāve created a FREE workbook to help you create your vision of the best housing solution for you and to take the first steps toward implementing this solution. Click Here to download the free workbook.
Marg shares the stories of Michael, Bill, Gord, and Kayleigh on the podcast. Below is a short overview of the home they have created, listen to the podcast and watch the Community Living St. Marys videos to hear their full stories.
Success Stories of Creating Home:
Michaelās story ā In his mid 20ās Michael lived in a rural area with his family, and was looking for opportunity to move out of his family home. Michaelās family bought a duplex in a small city, where Michael attended school and has access to transportation. Michael and his housemate live in the upper level and his supportive neighbours, Leah and her mom, live in the main level unit. The duplex is paying the mortgage, and when the mortgage is paid off it will enhance his Registered Disability Savings Plan (RDSP).
Note: Housing trusts can be explored if you are considering home ownership.
Billās story ā Bill had a supportive housemate living with him, and when his supportive housemate purchased their own home Bill moved with them. Sharing a home with an individual or a family is commonplace, but can be forgotten when considering housing options.
Gordās story ā Gord wasnāt interested in a staff model so he found a couple that live on a farm to live with, and they welcomed him in with open arms. This couple and Gord have shared their lives together for the last 19 years.
Kayleighās story ā Kayleigh moved out of her momās home and into her own apartment in an 8-plex building as part of Community Living St. Marysā āSupportive Neighbourā project with The Ontario Developmental Services Housing Taskforce . A young family lives beside Kayleigh and provides some supports. Kayleigh also ended up inviting Yvonne to live with her as a roommate.
- Note: The Ontario Developmental Services Housing Taskforce operates at armās length from the Ontario government who provided $3MM to fund new innovative housing projects over a 2-year period. In year 1, 12 projects were funded by the Housing Taskforce.
Ericās Story ā I live with a roommate in his own home, and he has outside support come to the house. We are roommates who provide each other friendship and I help with things like lunch, letting his dog out, and being there overnight.
Check out the podcast to hear some creative ways you can find people to share home with, and to hear the Lessonās Marg has learned helping people with disabilities to create their home.
A key takeaway for me from the conversation with Marg, and the research that I have done on housing is that families need to start thinking and acting on their own vision for housing. What does the ideal home look like? What does the ideal community look like? Take control of your own future. Click Here to download the free housing workbook to get started on your solution.
I thank Marg for coming on the podcast and sharing her experience and stories on housing for people with a disability.
Love & Respect, Eric Goll
How to Contact Marg McLean:
Email: mmclean@clstmarys.ca
Phone: 519-284-1400 Ext 225 Website: http://communitylivingstmarys.ca/
Podcast Resources: Community Living St. Marys Housing Booklet: Click Here Community Living St. Marys Housing Video: Click Here
In this podcast episode, Lynn McGregor provides educates us on accessibility in the built environment, tells us our rights when it comes to accessibility, and provides tips for making your home accessible.
How to contact Lynn McGregor: Ā
Email:Ā lmcgregor@mcgregordesigngroup.com Phone:416-395-0002 Website:http://www.mcgregordesigngroup.com/ Location: Toronto, Ontario, Canada Ā
Resources: Ontario Accessibility Laws:Ā https://www.ontario.ca/page/about-accessibility-laws Ontario Assistive Devices Program (ADP):Ā https://www.ontario.ca/page/assistive-devices-program#section-3
We have twoĀ guests on this episode, Sylvia Paurys, who has been providing personal supports for the last 20 years, and my sister Sarah. Sylvia has been providing Sarah support to build independence for the last 6 months, and Sarah has had tremendous results trying new things and becoming engaged in the community. Ā In this podcast we cover 3 main support topics; recruitment, connection and community.Ā Ā
How to contact Sylvia Paurys: Ā
Email:Ā sylviapaurys@everus.ca Location: Ontario, Canada
Resources:
Respite Services Ontario & Nova Scotia http://www.respiteservices.com/ Indeed Job Postings & Search https://www.indeed.ca/
Two sisters, Jade and Mallory Ryan, who are occupational therapists and experienced dancers are partnering with dance studios to create a dance class that is inclusive of kids with all abilities.
What you will learn in this Episode: - Hear Jade & Malloryās story of entrepreneurs creating a sense of belongingĀ - Learn the model of inclusion that they have built inside the dance studio - Learn the key success factors Jade and Mallory use to build an inclusive culture - Learn the many benefits the dance students of all abilities are receiving Ā
How to contact The Dance Ability Movement:
Website: www.danceabilitymovement.com
Email: contact@danceabilitymovement.com Location: Milton, Toronto, Ontario, Canada
Resources:
Video Links: Click Here Ā
A sibling care-giver tells her story of becoming her brother's go to person after her parents passed sooner than anyone expected. This podcast is important for all parents and siblings to listen to.
- Hear Helenās story as a sibling 'care-giver'
- Learn why it is important for siblings to be a part of family planning
- Learn how siblings can empower their families with conversation and tools
- Learn how Helen is changing Ontario policy, and how you can support.
How to contact Helen Ries:
Website: helenries.ca Website: gifts-assets.ca Contact Helen: helen.ries@gmail.com Location: Ottawa, Ontario, Canada
Resources:
Ontario Independent Facilitation Network OIFN.ca
Planned Lifetime Advocacy Network (PLAN) Click Here P4P Click Here A Manifesto for The Family Arm of the Disability Movement" by Helen Ries Click Here Ontario Leaves Many Persons with Disability Trapped in Poverty by Helen Ries Click Here Facebook Groups for Siblings
Canada - Click Here
USA - Click Here
Love & Respect, Eric
If you received value from this content please leave me a review on iTunes. By leaving a 5 star review on iTunes you make the Empowering Ability Podcast more discoverable, and more families will benefit. Click Here To Leave a Review on iTunes
What you will learn in this Episode:
- Hear Dannyās story of becoming an entrepreneur
- Learn about Dannyās motivational speaking
- Learn how Danny made his community more accessible Ā
How to contact Danny: Email:Ā dannysteeves@gmail.com Facebook Page: Danny Steves Public FigureĀ YouTube: Click HereĀ Ā Resources:
http://stopgap.ca/
Social Enterprise that is Empowering Growth and Inclusion, with Karen Chambers of Bob Rumball Associations for the Deaf Ā What you will learn in this Episode:
- Discover the Bob Rumball Associations for the Deaf
- Learn tools to communicate with a person who is deaf
- Learn Why Bob Rumball started a social enterprise
- Learn how social enterprise is empowering growth of individuals with disability, and fostering a more inclusive community.
- GetĀ tips on starting a social enterprise Ā Ā How to contact the Bob RumballĀ team:
Website: www.bobrumball.org
Contact: Click here
Phone: 905-878-4932
Location: Milton, Toronto, Parry Sound, Barrie - Ontario, Canada
Resources: Ā Spread the Sign App Ā Google Play: Click here Ā iPhone: Click here Ā Ā Love & Respect, Eric
006 - Social Capital; Building Relationships to Improve Well-Being, with Al Condeluci & Keenan Wellar
What you will learn in this episode: ā- Discover social capital
-
Learn why social capital is important (for everyone)
-
Learn the 4 stage frameworkĀ to increase an individual'sĀ social capital
-
Hear the story of how Chris increased his social capital Ā How to contact Al Condeluci:
Website: http://www.alcondeluci.com/
Contact: http://www.alcondeluci.com/contact/
Location: Pittsburg PA, USA
How to contact Keenan & the LiveWorkPlay team: Website: http://liveworkplay.ca/
Website: https://keenanwellar.wordpress.com/
Contact: http://liveworkplay.ca/contact-us/
Phone:Ā 613-702-0332
Location: Ottawa, Ontario, Canada
Resources:
Research Study - Canadian Journal of Disability Studies: 'Somewhere to live, something to do, someone to love: Examining levels and sources of social capital among people with disabilities' Click Here
Interdependent Network: www.buildingsocialcapital.org Ā Al Condeluciās book:Ā 'Social Capital: The Key to Macro Change'Ā Ā Al Condeluci's TED Talk: Social capital and the power of relationships Ā Ā Ā Love & Respect, Eric
Families Supporting Families, with Sue Simpson of the Waterloo Region Family Network (WRFN) Ā What you will learn in this episode: ā- DiscoverĀ family networks
-
Learn why families are joining family networks and the benefits they are getting
-
Learn how a mentor/ mentee relationship work
-
Learn who can benefit from joining a family network Ā Ā
How to contact the Waterloo Region Family Network team:
Website:Ā https://wrfn.info/
E-mail:Ā Katie (family resource coach): katie.galashan@wrfn.info,Ā Sue Simpson:Ā sue.simpson@wrfn.info
Location: Kitchener/ Waterloo, Ontario, Canada
Resources:
Evening of Elegance Event: https://wrfn.info/an-evening-of-elegance/
Family Alliance Ontario:Ā https://family-alliance.com/index.html
Kitchener/ Waterloo local resources:Ā https://wrfn.info/resources/
004 - Employees with a Disability and Employers Collaborate for Workplace Success, with Laura McKeen, of Cohen Highley LLP Lawyers
What you will learn in this Episode: - Discover Cohen Highly LLPās inclusion practices - Learn how to best present yourself as a job candidate with a disability - Debunking the myths of employing an individual with a disability - Learn the business benefits of hiring an individual with a disability
How to contact Laura McKeen and Cohen Highley LLP Lawyers:
Website: www.cohenhighley.com
E-mail:mckeen@cohenhighley.com
Learn more about Laura: http://cohenhighley.com/lawyers/laura-m-mckeen/
Location: London, Ontario, Canada
Resources:
8 Myths About Hiring Employees with Disabilities, by the Ontario Chamber of Commerce -http://www.occ.ca/emerging-stronger-agenda/8-myths-about-hiring-employees-with-disabilities/
Business Benefits of Accessible Workplaces, by the conference board of Canada - http://www.conferenceboard.ca/documents/6264_accessibleworkplaces_br_av.pdf
Partnership Council on Employment Opportunities for Persons with Disabilities Report, published by the Government of Ontario - http://www.conferenceboard.ca/documents/6264_accessibleworkplaces_br_av.pdf
Love & Respect,
Eric
003 - Independent Facilitation and Support Circles Enriching Lives, with Joanna Goode, Director of Facilitation Wellington Dufferin
What you will get in this episode:
- Discover Independent facilitation and support circles
- What is the investment? Cost? Benefit?
- Hear success stories with facilitation and support circles
- Learn howĀ to start working with an independent facilitator
How to contact Joanna GoodeĀ and Facilitation Wellington Dufferin:
www.facilitationwd.com
Phone: 226-326-0916
E-mail: info@facilitationwd.com
https://www.facebook.com/FacilitationWellingtonDufferin
Resources:
Ontario Independent Facilitation Network:Ā http://www.oifn.ca/
If you are outside of Ontario Google 'Independent Facilitation + your location' Ā to find local facilitators.
002 - The 5 Life and Financial Stages for Families With A Disability, with Tom Mahoney, of Freedom 55 Financial
- Hear Tom's Ā journey as a parent of a son with autism.
- Learn the financial life stages model of a family with a childĀ with a disability
- Discover the keys to financial success
- Learn questions your family should considerĀ at every life stage
Note: Before the recording of this episode I didn't have an understanding of the impact of language like 'special needs' families. Since this episode I've used and promoted language that promotes ability and capability. The spirit of intent in using the term 'special needs' families in this episode comes from a positive place and the information in this episode is extreemly valuable to families and individuals with a disability.
How to contact Tom Mahoney:
Email: tom.mahoney@f55f.com
Resources:
Specific products were not discussed in depth in this episode, but here is a great resource on the Registered Disability Savings Plan (RDSP) in Canada.
http://www.rdsp.com/
001 -Ā The movement to individualized support, and accessing developmental support services, with Keenan Wellar, Co-Leader of LiveWorkPlay.
What you will get from this episode:
- Learn howĀ LiveWorkPlay came to be
- The latest on the trend toward citizenship and individualized support
- Learn how to access support from developmental support agencies (in Ontario, Canada)
How to contact Keenan Wellar and LiveWorkPlay:
http://liveworkplay.ca/
613-702-0332
Resources:
Developmental Services Ontario (DSO) -Ā https://www.dsontario.ca/
From Presence to Citizenship Video
The video which was shown at the start of the Learning Exchange highlighting stories from the project partner organizations is available on the Learning Community and on YouTube. Please feel free to share this video with your Board, management team, staff, volunteers, family and friends!
The YouTube link is: https://www.youtube.com/watch?v=ZWd5wlrrw4w
000 - Podcast Introduction & Eric's Story, with your host, Eric Goll
What you will get from this episode:Ā
- Hear my story, featuring my mom & sister!
- Learn why I amĀ creating the podcast
- Learn what's in the podcast for you
- If you want to learn more about me, take a listen!
How to contact Eric GollĀ and Empowering Ability:
www.empoweringability.org
eric@ericgoll.com
Facebook CommunityĀ - Join the conversation and ask questions about the podcast!