Navigating Life as we Know It: Recent Episodes
Steven Johnson
Navigating Live as we Know It seeks to build an educational and entertaining way to help the people around those with Special Needs better find the way to live their best, most self-determined life possible, and how to manage the challenges of the systems
When you first discover you'll be parenting a child with disabilities, the road ahead can seem daunting and lonely. Kris Burbank and Linda Hoopes join me to shed light on this path, offering wisdom from their book "Embracing Another Normal." Together, we unpack the resilience necessary for such a journey, sharing personal stories and strategies that resonate not just with parents, but anyone facing adversity.
The podcast unfolds the reality of raising children with unique needs, unwrapping the complexities like the layers of an onion. We discuss the importance of fostering connections and nurturing positivity, even when the isolation feels profound and the challenges insurmountable. Our conversation is filled with genuine experiences and practical advice, aiming to build a lifeline of resilience for families navigating these waters.
Finally, we tackle the notion of strategic decision-making and energy management, with Kris and Linda presenting their framework for resilience that can be applied across life's challenging terrains. Listeners will come away with a sense of empowered grace, learning that it's not about avoiding obstacles, but rather, reframing them into opportunities for growth. Join us for a heartfelt exchange that celebrates the strength found in vulnerability and the triumph of the human spirit in the face of life's unexpected turns on a special hiatus episode of Navigating Life as we Know it!
Use this link to order your own copy of Embracing Another Normal from Amazon: https://a.co/d/5lZFmbK
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Thank you for listening to our podcast and for your continued support!
We're taking a break to recharge and plan some exciting new things for the show. We'll be back with a fresh season featuring more in-depth explorations of disability issues, along with new segments and interviews.
If you'd like to learn more about NLAWKI please visit our facebook pageand if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!
Ever wondered how one's mindset shapes their success? Join us as we explore this theme with the remarkable Dr. Temple Grandin, an autism advocate who turned her diagnosis into a testament of resilience. She shares her journey from a non-verbal childhood to becoming a professor at Colorado State University and a celebrated author. Listen in to this riveting conversation and learn about her fervent advocacy for people with disabilities, her views on the value of different thinking styles, and her firm belief in hands-on skills in both education and industry.
In today’s tech-driven world, practical skills are often overlooked. However, they carry immense value, not just in education, but also in industry. This episode highlights the importance of practical skills, the impact of mentorship, and the crucial role of social skills. We discuss the influence of Dr. Grandin's mother, and William Carlock, Temple's grade school science teacherher early educators, who, from an early age, challenged and inspired her. We also examine the impact of technology on practical skills, and Dr. Grandin's views on transitioning young adults with autism into independence.
Our thoughtful conversation goes on to embrace the importance of exposure to a variety of activities for young adults with autism. We delve into the pressing need for policymakers to understand the practical side of things, and we finish off with a profound discussion on social responsibilities. Hear Dr. Grandin's insights on social skills in autism, the significance of responsibility, and the changing dynamics of teaching manners in schools. Don't miss out on this enlightening episode with Dr. Grandin, it promises to provide you with a fresh perspective on success, resilience, and the power of the human mind.
Support the show
Thank you for listening to our podcast and for your continued support!
We're taking a break to recharge and plan some exciting new things for the show. We'll be back with a fresh season featuring more in-depth explorations of disability issues, along with new segments and interviews.
If you'd like to learn more about NLAWKI please visit our facebook pageand if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!
Navigating the world with a disability can often feel like an uphill battle, especially when it comes to travel. We've experienced it firsthand as we journey with our son Lliam. Our struggles sparked a conversation and led us on a journey to understand more about accessibility. We found ourselves crossing paths with the passionate advocates behind AccessibleGo – a leading accessible travel website in the US that's revolutionizing the game for travelers with disabilities. Today, we're thrilled to bring you a deep dive into this fantastic platform and the people at its helm.
In our chat with AccessibleGo's Program Manager, Patch Epstein she gives us an inside look into how they're breaking down barriers in travel, confirming accessibility for each booking, and generating revenue while doing so. Patch shares the experiences of several clients and the transformative impact AccessibleGo has had on their travels. Plus, we pick her brain on ways we can make our own spaces more welcoming and accessible.
We round off our discussion by delving into the wide array of services AccessibleGo offers to improve travel accessibility, and Patch shares their vision for the future. From booking accommodations to providing a treasure trove of resources for travelers with disabilities - they're truly making a difference. Patch also talks about their inspiring Travel Inspiration blog, a brilliant resource for activity ideas. So, let's explore together and learn about the incredible work AccessibleGo is doing to pave the way for truly accessible travel for all.
Support the show
Thank you for listening to our podcast and for your continued support!
We're taking a break to recharge and plan some exciting new things for the show. We'll be back with a fresh season featuring more in-depth explorations of disability issues, along with new segments and interviews.
If you'd like to learn more about NLAWKI please visit our facebook pageand if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!
When we first spoke with Tiffany Dill several months ago it was about her Universal Design Consulting firm, Blue Day 2. As of July 1, 2023, she has combined her talents and passion for accessible design with Gretchen Kingma, who, like Tiffany, has experience as an Occupational Therapist. Gretchen is also a top producing realtor in the St. Louis area who founded Empowered Homes to fill the gap in real estate services for people with disabilities and adults who wish to age in place. Together Tiffany and Gretchen have launched Custom Joy with a mission to "Build Thoughtful Spaces And Joyful Places For All." Tiffany has an exciting story to share about the creation of Blue Day 2 and taking it to the next level with Custom Joy. For those of you who thought accessibility necessitated the sacrifice of tasteful design, comfort and beauty, fasten your seatbelts...because you are about to discover a whole new world of possibility, where "Thoughtful Spaces And Joyful Places" also offer beauty and access to everyone!
Support the show
Thank you for listening to our podcast and for your continued support!
We're taking a break to recharge and plan some exciting new things for the show. We'll be back with a fresh season featuring more in-depth explorations of disability issues, along with new segments and interviews.
If you'd like to learn more about NLAWKI please visit our facebook pageand if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!
Moving out of a family home is one of life's "exciting, sad, happy, and scary" events. There are so many changes that come with having a place of your own. But...there is also growth and independence. There are new things to discover and experience - for parent care providers and for the young adult who is spreading their wings. Todays story is about Will McAllister and his transition to his own apartment and a new independent life! It is also a story about parental faith and steadfast love in the ability of their son to adapt and blossom in the world.
So join us on our magical journey into the mysterious realm of living independently and all the exciting opportunities that it brings
Support the showThank you for listening to our podcast and for your continued support! If you'd like to learn more about NLAWKI please visit our facebook pageand if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!
We all have two basic needs as human beings. One is to be authentic, to live our lives in a manner that reflects our true selves. The other human need is to be accepted within a community. When these two need conflict, when the community to which we belong does not accept our authentic self, the most common reaction is to "mask" that part of our identity that puts us at risk of being excluded from our association with other community members. The MDRC mission is to "... cultivate disability pride and strengthen the disability movement by recognizing disability as a natural and beautiful part of human diversity while collaborating to dismantle all forms of oppression." And while it is not possible for MDRC, or any advocacy organization, to reform the entire world, they are committed to creating a space for self-discovery, to cultivate community, and to develop pride. And they have developed an admirable track record in doing so.
Support the showThank you for listening to our podcast and for your continued support! If you'd like to learn more about NLAWKI please visit our facebook pageand if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!
Many people seem to have a "problematic" relationship with sleep. We take medications to keep us awake...and we take medications to make us sleep. But sleep...a GOOD night's sleep, is essential to our psychological and physical health. Autism is one of those disabilities that can manifest itself in a broad spectrum of sensory issues...and often the ability to sleep through the night is seriously affected. Most of us know what it feels like to suffer from sleep deprivation, because if a child is not able to sleep, the odds are that neither are their parents. zPods® is a company dedicated to creating a solution for this problem. Co-founder George Bailey explains how zPods® create a calming, comfortable and safe space designed for better sleep.
To learn more about zPods® be sure to stop by their website
Support the showThank you for listening to our podcast and for your continued support! If you'd like to learn more about NLAWKI please visit our facebook pageand if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing NLAWKI with someone you know!
Individuals with intellectual and/or developmental disabilities (I/DD) and their families often find themselves dealing with complexity and even intentional obfuscation as they navigate the path of Medicaid eligibility and benefits That is why we find it exhilarating when along that path we find individuals with expertise and empathy. I have discovered both those qualities in Marianne Huff. Although Marianne's highest level of expertise is in the mental health arena...the rules governing Medicaid are, with just a few exceptions, the same we deal with in the I/DD world. I have known Marianne for several years. About 5 years ago she provided invaluable information when we found ourselves in a benefit eligibility dispute with our local Community Mental Health organization and were anxiously facing an appeal before an Administrative Judge. Marianne's advice and guidance resulted in a positive outcome for our son Lliam. I believe you will find this episode enlightening and come to realize we also have allies and advocates within the community of professionals working MHAM. They Listen and they Care!
Support the showThank you for listening to our podcast and for your continued support! If you'd like to learn more about NLAWKI please visit our facebook pageand if you'd like to support our program more directly, stop by our Ko-Fi and make a contribution! But the most important way you can help our program is by sharing it with someone you know!
"The best laid plans of mice and men often go awry!" is an old and unfortunately true statement. And "best laid plans" often "go awry" for two reasons. 1) poor planning...or no planning, and 2) people don't work collaboratively to create solutions that work for all concerned. Both are a result of human error. And both are avoidable. But we all know that within families and friends differing points of view on how to solve a problem can wreck havoc on the best relationships. And that is most unfortunate, because it is different points of view that often help create the best plans. But that rarely happens without deliberate effort. And when it does happen it is cause for celebration! So...how do you plan for the future anticipating the kerfuflfes that are likely to ocurr? One way is to work with an experienced and compassionate attorney. Someone who knows the "ins and outs" of disability planning and is sensitive to your needs. The other is through a trusted 3rd party who can "step into the gap" before a conflict arises and empower individuals to recognize and solve conflict before it sinks the ship! We hope you enjoy today's episode about creating collaborative trusts as much as we enjoyed creating it for you!
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Voting is a constitutional right for an overwhelming majority of Americans, but the reality is people with disabilities, racial minorities and economically challenged individuals face far more obstacles to voting than most voters. Unsubstantiated allegations of mass voter fraud were circulated and amplified after the 2020 presidential election and conspiratorial politicians laid plans for another, more devastating voter fraud scheme.... to suppress voting by mail and drop box through heightened scrutiny, including picture ID voter verification. These extra requirements on top of the transportation and accessibility challenges already faced by individuals with disabilities have caused tens of thousand of ballots to be disqualified in Texas primary elections held in anticipation of the 2020 midterm elections. The voter suppression laws sought by many states are nearly identical in nature and very similar to the "Secure the Vote" ballot initiative that was being circulated in Michigan. Voting is a constitutional right! No one should ever have to endure an obstacle course challenge to obtain and cast a ballot in America.
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In this new book, Tracee offers you the tips she remembers, stories of adversity and success, to document her personal battles with self and others in a position to grant or deny life-saving tools, equipment, and the access to freedom we all hold dear but often take for granted. The author encourages all of us to use the Field Notes daily to meet success and navigate each one of life’s seemingly impossible hurdles. Topics in the book include: employment, mental health, education, family, physical health, travel, recreation, emergency preparedness, housing, and more, throughout the lens of that elephant in the room, the things no one addresses as you live a life because we to are trying to figure it all out and many of us keep the cliff notes to ourselves. How will you do any of this despite disability? It won’t be easy, but you’ll make it. Who is this book for? Anyone who could use some encouragement and real, candid talk about live with disability. Use this book to start to answering all those things that worry us but we don’t want to confront. Make a plan with this book for long-term challenges and navigating the “No’s” in life. Find what you need that no one wants to tell you, with a special section called The Parent to Disabled Child Manifesto. This book is for us all but especially anyone working with and/or raising children and young adults with disabilities, direct support, self advocates, special needs teachers, and the practitioners, caregivers, uncles/aunts and any member of society still ignorant in their thinking about the contributions and capabilities of Americans with disabilities. Sound advice through personal experience can make all the difference in the world.
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If you set out to climb the Himalayas it would be wise to hire a sherpa. Why, you ask? Because the climb may be treacherous and your mistakes very costly! A sherpa has been on the path many times and knows how to climb to the top with positive results. How much do you want to leave to chance? The same may be said about navigating the challenges and obstacles ever present for people with disabilities. Legal planning, financial planning, benefits planning, educational programs, work incentives (and disincentives), IEPs, Person Centered Planning, Medicaid Waivers, Social Security Disability, affordable and accessible housing, transportation.... All these added together make that Himalayan climb look like a walk in the park! If you need help, you may find Vitalxchange is the answer...or your sherpa! Vitalxchange has created a world where parents and providers caring for special needs children can partner to help children thrive.
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There is a gulf between changing a world and changing THE world, and the difference is the people who help build the steam needed to bring about true and lasting change to the way a society approaches a topic.
Earlier this season we discussed the life and advocacy of Bill Rush and some of the people around him on his quest for a life on his terms. We had a chance in the followup to talk with a contemporary of his, John McGill, who offered insight into the changing of the disability landscape on a local level - attending university.
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Affordable, accessible housing, transportation and internet availability are serious issues for people with disabilities in just about every state in the USA. It is especially problematic in rural areas. As if these challenges weren't enough, the crew of the Disability Resource Network in Huntsville Alabama opened for business during the early days of the COVID-19 pandemic. For some, quarantine and social distancing would have been the straw that broke the poor camel's back. For Davina Patterson, Katie Toro and Deshon Washington it was just another bump in the road to success. This "new kid on the block" Center for Independent Living was strong out of the gate. They leveraged technology in the best way they could and partnered with other local and regional non-profits to create awareness of the services they provide. And Davina, Katie and Deshon have exhibited a contagious enthusiasm and optimism...all IN SPITE of these challenges. Or maybe we should say BECAUSE of the challenges they face! We are proud to bring you their story!
If you'd like to know more about this episodes guests, please check out their website HERE!
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Imagine engaging an architect to create plans for the perfect house to fill all your needs.... You are excited about turning this dream into a reality…but then discovering there is no one to do the excavation for the foundation. Also, there is only one carpenter to work on the frame...and that craftsman can only work 12 hours a week on your project. There is a shortage of plumbers...so you will have to make do with an outhouse until one is available. And an electrician? Sorry...only one is available, and she can work on your house for only a few hours a week. How will your house ever get built? But wait! It gets worse! You see, in the previous example we are merely talking about inconveniences affecting a construction project. The worst case is...you cannot move to your dream house anytime soon. But what if instead of a carpenter, an excavator a plumber and electrician we are talking about Direct Service Professionals needed to help you get out of bed in the morning because your disability prevents you from doing so yourself? What if there is no DSP to help you bathe, dress, or transport you to work? What if there is no one available to help you into bed tonight? Now "inconvenience" becomes "existential,” and you are faced with a huge obstacle to…just living! This is where hundreds of thousands of Americans living with disability find themselves today. They are in desperate need of help, and there is an extreme shortage of individuals trained and qualified to provide that assistance. Our conversation today is with Joseph MacBeth President and CEO of the National Alliance of Direct Service Professionals (NADSP). Joe has worked in the field of intellectual and developmental disabilities since 1983 – beginning as a Direct Support Professional. We will hear what his organization is doing on the state and national scene to help alleviate the DSP Crisis.
Episode 3 - Life together and Changing the World
Most movements for social change are identified with a few prominent and well-known leaders. For instance, people like Martin Luther King, John F Kennedy, and Robert Kennedy, among others, are associated with the Civil Rights movement in the USA. Nelson Mandela is a name synonymous with the abolition of apartheid in South Africa. The truth is…these individuals provided a voice and a face to the movement, but without the thousands who heard them and actively responded to their cries for equality and equity for all human beings, nothing would have been accomplished. Largely unknown are the names of those individuals who actually brought about change by their activism and advocacy.
William Rush (Bill) is one of those committed individuals who responded to the call of equality and equity for all who live with disabilities. Bill was never satisfied to just obtain the assistance he needed personally to live independently and move about the community without obstacles blocking his participation. He had a strong motivation to change the world for all those living with disabilities “in a world not made for them.”
The story of Bill and Christine is told in their book Our Life Our Way. The following three podcast episodes draw on the experiences and advocacy skills developed by Bill and Chris as they fought for a life together in a world filled with physical and societal challenges unique to the disabled. Bill and Chris have much to teach all of us! We hope their story and their struggles both motivate and support you in your own journey for inclusion.
Episode 2 - Love and the Audacity of Change
Most movements for social change are identified with a few prominent and well-known leaders. For instance, people like Martin Luther King, John F Kennedy, and Robert Kennedy, among others, are associated with the Civil Rights movement in the USA. Nelson Mandela is a name synonymous with the abolition of apartheid in South Africa. The truth is…these individuals provided a voice and a face to the movement, but without the thousands who heard them and actively responded to their cries for equality and equity for all human beings, nothing would have been accomplished. Largely unknown are the names of those individuals who actually brought about change by their activism and advocacy.
William Rush (Bill) is one of those committed individuals who responded to the call of equality and equity for all who live with disabilities. Bill was never satisfied to just obtain the assistance he needed personally to live independently and move about the community without obstacles blocking his participation. He had a strong motivation to change the world for all those living with disabilities “in a world not made for them.”
The story of Bill and Christine is told in their book Our Life Our Way. The following three podcast episodes draw on the experiences and advocacy skills developed by Bill and Chris as they fought for a life together in a world filled with physical and societal challenges unique to the disabled. Bill and Chris have much to teach all of us! We hope their story and their struggles both motivate and support you in your own journey for inclusion.
Family, Faith, and the Seed of Self Advocacy
Most movements for social change are identified with a few prominent and well-known leaders. For instance, people like Martin Luther King, John F Kennedy, and Robert Kennedy, among others, are associated with the Civil Rights movement in the USA. Nelson Mandela is a name synonymous with the abolition of apartheid in South Africa. The truth is…these individuals provided a voice and a face to the movement, but without the thousands who heard them and actively responded to their cries for equality and equity for all human beings, nothing would have been accomplished. Largely unknown are the names of those individuals who actually brought about change by their activism and advocacy.
William Rush (Bill) is one of those committed individuals who responded to the call of equality and equity for all who live with disabilities. Bill was never satisfied to just obtain the assistance he needed personally to live independently and move about the community without obstacles blocking his participation. He had a strong motivation to change the world for all those living with disabilities “in a world not made for them.”
The story of Bill and Christine is told in their book Our Life Our Way. The following three podcast episodes draw on the experiences and advocacy skills developed by Bill and Chris as they fought for a life together in a world filled with physical and societal challenges unique to the disabled. Bill and Chris have much to teach all of us! We hope their story and their struggles both motivate and support you in your own journey for inclusion.
It is not ever comfortable discussion what happens after someone dies. But when it comes to the death of care providing parents conversations need to happen and plans must be made. Legal, financial and Medicaid Planning are important, of course, but living a full life is more than providing these core necessities. Life as we know it (and aspire to live it) includes meaning, purpose, identity and being “seen” by the members of your family...whether that “family” is the product of biology or personal selection. This does not happen by accident, especially when one or more members of the family live with intellectual and/or developmental disabilities. The “how” of inclusion needs to be on the table for discussion before the “when” becomes the present.
When you have a child with a developmental or intellectual disability your life gets complex. Often it becomes overwhelming. Navigating a path to find the right resources is essential. Today's episode is about two Medicaid Waivers that provide valuable supports, The Michigan Waiver for Children and the Michigan Waiver for Children with Serious Emotional Disorders (SED). We also cover the basics of Michigan's Children's Special Health Care program. If you don't live in Michigan, your home state will have very similar programs available. We also will discuss the value of using an Independent Facilitator for Person Centered Planning. Everything starts with a good plan, and the trained professionals who facilitate the person centered planning process guides that will help you make the most of the resources available for your child to enjoy a full life to the greatest extent possible! I hope you enjoy our show! Please reach out to us with your comments, questions and suggestions by emailing us at contact@NLAWKI.com.
Imagine yourself on a vacation to a country where your native language is not spoken. Let's say Portugal. You do not know how to speak or read Portuguese, but you are given a map to help you get around.... but the map (of course) is printed in Portuguese. You can see the roads and have a vague idea of where you are going, but the map does not tell you what the BEST route is. And you won't know what lies between your current location and your destination because....YOU CAN'T READ PORTUGUESE! If you get lost it will be hard to ask for directions unless you can find someone who speaks your language. Are you feeling a little stressed out? State Medicaid regulations are not written in Portuguese, but amid all the other confusion about benefits, qualifications, forms, releases and assessments that must take place to qualify and receive Medicaid benefits the forest can often get obscured by all the trees. What is the difference between a Habilitation Waiver, a MI Choice Waiver, and a MI Health Link Waiver? Which one is the best fit for you or your loved one...and how do you decide (If you have been given a choice)? How does a Person-Centered Plan determine Medical Necessity for an individual with I/DD. Today's episode will try to answer these and more important questions for you! And if you have any questions that are not addressed, please contact us at contact@NLAWKI.com. We would love to hear from you!
Our show today is “The Different Flavors of Medicaid Waivers” …. but you are also going to hear a lot of discussion about person-centered-planning (PCP) and the proper use of two assessment tools associated with person centered planning process... the Supports Intensity Scale (SIS) and the Psycho-Social Assessment (PSA). Why?? Because assessment tools, person-centered plan and Medicaid Waivers all work together for benefit of the individual at the center of the plan.
To help explain how all these planning steps work together, you will hear us use a freight train analogy. The engine is the person-centered plan. It pulls the whole train! The engineer is the person at the center of the plan who determines the train’s route and the cargo in the box cars. The engineer also gets to decide where the train goes and its travel schedule! But…. if the engine does not do its job properly everything behind it is…. sort of…. pointless. The train never leaves the station!
Medicaid waivers are a critical component of the person-centered plan because they provide the bridges, switches, and the special side rails necessary for the engine to travel its route and fulfill the engineer’s goals. All Medicaid waivers provide similar benefits but a few of them provide unique “side rails” that allow an engineer with more challenging circumstances achieve a fully engaged self-determined life! This is information YOU NEED TO KNOW!
Today we will speak about the Michigan “State Plan” (aka 1915b), and the MI Habilitation Supports Waiver (Hab Waiver) in addition to the SIS, the PCA and the PCP (what would we ever do without acronyms?) We hope today’s podcast will help you make the best use of these tools, because it is all about providing engineers the opportunity to live a fully engaged and self-determined life.
Growing up can be hard. Especially the teenage years. And even more so if the teenager in question has social skill deficits. As humans we are all "hard wired" for relationships with other humans. Individuals living with autism often want to develop skills necessary to make and keep friends. They need to learn the skills necessary to navigate various social situations in which they may not feel comfortable. And they also must learn how to manage conflict and rejection. Parents and care providers may feel clueless on how to help teens develop the social skills necessary to engage with neuro-typical peers. But where there is a will.... there is a way! The Social Skills Group at BRAINS in Grand Rapids, MI recently concluded their Social Skills Group summer session based upon a program developed at the Semel Institute for Neuroscience and Human Behavior at UCLA. The Program for the Education and Enrichment of Relational Skills (PEERS®) provides evidence-based social skills treatment to preschoolers, adolescents, and young adults with autism spectrum disorder (ASD), attention deficit/hyperactivity disorder (ADHD), anxiety, depression, and other socio-emotional problems. PEERS® isn't a diagnostic tool. It is a tool kit designed to help individuals develop social skills through didactic lessons and role play demonstrations as well as providing participants opportunities to practice these skills through socialization activities. And IT WORKS! I hope you enjoy today’s presentation! The development of social skills has the power to change and enhance the life experience of everyone who seeks to belong, to be seen, and to engage with the world around them.
I'm probably showing my age...but some of you might remember the routine of "defragging" your computer to allow it to work more quickly and efficiently. It was once described to be as allowing your computer to take some time to put files away and "clean up" it's desk. This was it was able to work better. Well, wouldn't it be nice to defrag your mind on occasion? Just to put away the loose ends and clutter that we tend to accumulate and bog down our brain and sap our energy? Well, you can defrag your mind with a simple process called meditation. It's not a "new age" phenomenon or a fad. As a matter of fact, it's now pretty much mainstream in Western society and is used to improve people’s lives from boardrooms to locker rooms. From grade schools to grad schools. And to help overcome emotional as well as physical pain. There's no costly equipment to buy, no deep philosophical concepts to master and not even any specific right way to do it. Our new series on practicing mindfulness, called The Mindful Minute will help you defrag your mind and hopefully also help you improve your outlook on life, love, work and the common everyday stressors that plague the lives of people living with disabilities and the people they love. I hope you enjoy The Mindful Minute!
Be well and be kind,
Steve
"There's no place like home!" In the Wizard of Oz Dorothy said these words and clicked the heels of her ruby slippers three times. Instantly she was transported back to her farm home in Kansas. This makes for an enduring story...but getting into the right home presents a little more of a challenge today. Especially if you live with an intellectual and/or developmental disability. You have many obstacles to contend with, such whether you want a roommate(s), where you will live...house, apartment, condo. Is it better to buy (if the funds are available) or lease? What is the appropriate level of support needed and who will provide supports? How will I fit into the community? Do I want a job or volunteer work to live a full life? Just to name a few. Just about all of these decisions need to be made by the person with disabilities along with their family and other valued advisors. Sound like a lot of work, doesn't it? Well NESTIDD is an organization that has some good news to share with you! When it comes to selecting the right house, at the right location, with all the needed structural modification, that also meets YOUR definition of "affordable" NESTIDD can make the process much easier for everyone! NESTIDD will even mow the lawn, shovel snow, fix the leaking faucet and provide regular home maintenance. Our interview today is with Andrew Parker, a co-founder and CEO of NESTIDD, a Chicago based company serving the disability community with affordable housing options! Andrew has some exciting information to share with us!
Everyone has heard the phrase "forgive and forget." That isn't always possible, or even advisable. It is important to remember. To recall emotional pain that has played a destructive role in the course of your life and in your relationships. With these memories it becomes even more important to forgive, or to ask forgiveness, so you may convert the hidden pain your have experienced in your past from suffering to growth. A very empathic person, Shannon has accumulated great knowledge and experience in the process of healing emotional pain through forgiveness. She is eager to share her leanings and experiences by coaching others in the journey from suffering to growth.
Follow Shannon's Journey here
Remember Dorothy and the Wizard of Oz? She had an impossible task. First retrieve the broom stick of the Wicked Witch and deliver it to the Wizard of Oz who would grant her wish to return to her home in Kansas. Doesn't life feel like that sometimes? Impossible task? Improbable goals? Flying Monkeys all around you? Attempting to find and secure affordable, community based, appropriately supported housing during a skyrocketing real estate market makes snatching a witch's broom stick look easy, doesn't it? The families with Oasis Community of West Michigan have persisted and learned a few things on their trip down the Yellow Brick Road. Most of all we discovered there is power in numbers and when a growing group of families with diverse talents and skills work together the impossible and improbable become attainable! Today we visit with co-founders Grace Smith, the president of Oasis Community and Lynn Surdock, secretary who, along with "yours truly," set off on the Yellow Brick Road 13 years ago. Just like the Tin Man, The Cowardly Lion, and the Scare Crow you will learn that we all have immense powers to achieve our housing and independence goals.... if you start by believing in the mission and have faith in our own abilities to make it happen!
It's hard to let go of things...and I have a garage filled with items I should have let go of years ago. But I keep thinking, maybe I'll find a use for this "thing." But I hardly if ever do. It is much different letting go of people, but it is natural and necessary when raising children to "let them go" in order to "let them grow." We learn by facing new life challenges, often making mistakes in the process, but learning from our experiences! I have personally made my share of mistakes and have learned some valuable life lessons. But it is a little different for parents when the child they are "letting go" of has an intellectual and/or developmental disability. We feel protective. We feel responsible. We feel indispensable. But we have a responsibility to our children with I/DD to provide them with a life of self-determination and inclusion. Why? Because human beings thrive when they are allowed to grow. We also make better connections and friendships that serve us well throughout our lives when we make our own choices and pursue our own interests. Of course, parents and families will always be "there" for support and especially in times of trial, but we owe it to our children to try out their own wings. Our session today is with Helen Barron and her son Jacob Barron who almost three years ago successfully moved out of the family home and has done amazingly well, with appropriate supports, living in his own apartment.
Bridges create opportunities for connection. They empower travel to visit people and places that might otherwise be inaccessible. And they often unite people together to pursue common goals. Some are span enormous distances while others are measured in feet and inches. Today’s show is about one of the world’s smallest bridges. But it may be one of the most important bridges you will ever cross. The “bridge” we explore today is named Zavikon, a company founded by our guest, Rebecca Beam.
Zavikon is on a mission:
“We believe there is a job for everyone to apply their talents and skills in a meaningful way. Our mission is to match qualified candidates with disabilities or those who are neurodivergent, with employers who believe inclusion is the future. Zavikon is the bridge to inclusion.”
The Space Shuttle, with over 2.5 million parts, 230 miles of wire and 1,060 plumbing valves was once described as the most complex "machine" ever made by man. For successful results it's mission requirements complex systems and a flawless degree of accountability were essential. Flaws in those complex systems resulted in the disasters of Columbia and Discovery. Our health care system, experienced from a patient perspective, appears to rival the Space Shuttle in complexity. But in the case of health care, complexity and a lack of accountability are factors that often lead to inadequate, inaccessible, unaffordable and unacceptable levels of care for our some of our most vulnerable citizens...those living with intellectual and developmental disabilities and/or mental health concerns that necessitate a lifelong array of specialized care services to live a full life and participate in their communities. As it exists today, our health care system is flawed and everyone agrees changes are needed. "Integrated Care" is the term often used to propose solutions to the complexity that haunts our health care system. However the political solutions being debated today merely "integrate" the payment side of care. These are "top down" economic solutions designed to outsource the state's responsibility to it's vulnerable citizenry to private enterprise where profitability and shareholder ROI is the #1 primary concern. Integrating care from a patient's perspective would ensure all mental and physical health care needs are adequately and appropriately met, attendant care is always available and barriers to inclusion are removed or mitigated. Integrated care should enable persons with disability to be integrated into our communities.
Most of us at one time or another have driven down a dark road and found ahead of us a deer transfixed, staring into our headlights? Have you ever felt like you have something in common with the deer? In the disability community we face a labyrinth of rules, regulations, benefit levels, service options, waivers, forms and...well you get the picture. It all looks more like and obstacle course than a path forward. It's in unchartered waters like these that a navigator, someone who knows and has experienced the challenges, is a life saver. Eric Jorgensen is one of those navigators who do their best to simplify the path in front while covering all essential bases to help families and individuals with disabilities experience a more fulfilling and meaningful life.
Check our Eric's website for info about his services and podcastOr stop by his Facebook page and say hi!
"You can't age out of being in a family" according to Rabbi Levi Shemtov, Executive Director of the Friendship Circle in Bloomfield Michigan. Over the past 27 years as children within the Friendship Circle have grown so has the capacity of Friendship Circle to meet their employment needs and enhance the quality of their lives. The Soul Cafe and Soul Studio, launched in 2016, are located inside the Friendship Circle’s Farber Center where they provide a loving and inclusive environment that encourages artistic self-expression, vocational training, and employment opportunities to adults with special needs. In the fall of 2020, during the COVID-19 pandemic, an opportunity arose (shall we call it by Divine Coincidence) for Friendship Circle to purchase the nearby Dakota Bread Company which expanded their employment and vocational training opportunities for adults with disabilities. Our interview today with Levi and Bassie Shemtov provides a behind the scenes glimpse at how Friendship Circle's special blend of love, inclusion and opportunity bring people together to create an inclusive family from which you can never "age out".
Today’s episode is an interview with Annette Downey, the Executive Director of Community Living Services, an organization that provides Independent Support Coordinators, (abbreviated as ISCs) for Wayne, Oakland, Macomb, and Kent Counties in Michigan. And as of July 2021, CLS has expanded their services to Ottawa County.
For non-Michiganders tuning in I think you will find this interview relevant as well. No matter where you live in the United States or its territories, people with disabilities receiving Medicaid funded supports have the right to request an ISC. Annette will share with you the advantage of working with a support coordinator who is independent and serves as your advocate.
For those of living in Ottawa County you will soon have a choice to make. You now have the option to select your own coordinator via Community Living Services. ISCs are self-employed, extensively trained and knowledgeable. Being self-employed they are focused on helping you achieve the quality of life you want without conflict of interest in recommending a services based upon cost, or agency bias either for or against a service provider.
Making an educated decision is in your best interest. It is my goal that this conversation with Annette Downey will inform you about the benefits of choosing an independent support coordinator through Community Living Supports.
We hope this episode is of value to everyone who listens to it. Your feedback and comments are always welcome. Please contact us by email at contact@nlawki.com
We're back and we've got a new trick! NLAWKI Returns a couple weeks ahead of our OFFICIAL SEASON 2 START DATE with a special release about a new way to learn conversation skills - CHAT CHAINS! Check out the links below and make sure you tune in to our official Season 2 startup on the 28th of July!
Most neurotypical individuals learn to communicate naturally as we grow and mature both verbally and through body language. Individuals with autism and various other developmental disabilities face a greater challenge. Overcoming these expressive challenges is often critical to obtaining their other goals of a full life, like self-advocacy, employment, developing friendships, and living more independently.
One of the most fun and effective ways of learning new skills is through game playing… but many games are created to produce one winner…and many losers. Chat Chains is a game that helps players learn how to engage in more effective conversations and deepen relationships between the players so that all can enjoy “the thrill of victory” without “the agony of defeat.”
You can purchase the game from Amazon hereStop by ThinkPsych's Website Here
Imagine growing older...but never growing up. Never being allowed to make decisions or choices that influence your future, or bring you happiness. Never being able to "grab the brass ring" because the person(s) who make decisions on your behalf think it's either too risky, or beyond your ability to achieve. What a small and lonely world to live in! Today we present the second installment of a two part episode on supported decision making. We discuss the value of presuming competence...not incompetence. And the value of developing supportive relationships with individuals who can provide advice when we are confronted with choices that affect our future. Let's provide "the dignity of risk" to all people in their pursuit of happiness.
Further resources are available on our Blog Postfor this episode, create your NLAWKI account and get regular updates on our main site
We all seek advice from time to time. Especially when confronted with a challenge that is unique to us. Sometimes that trusted advisor is a friend who has expertise in solving the problem we face, or a professional who can help us navigate our way to a desired outcome. And if all else fails, today we have YouTube tutorials in just about everything from how to open a jar of pickles, to Do It Yourself brain surgery! Help and support pervades our environment, if only we seek it. Seeking support in making decisions is a human condition regardless of ability. We learn and we grow as we work collaboratively and interdependently to solve problems and seize opportunity. If we aren’t allowed to make our own decisions we remain dependent on others at the expense of our own self-esteem and self-confidence.
Today we learn about Supported Decision Making in Part 1 of a two part episode. We speak with the chairperson of the Michigan Developmental Disability Council, Bonnie Gonzales and Mary Sheehan-Boogaard the Community Inclusion Coordinator for the Michigan Developmental Disabilities Council.
Subscribe to Updates on our Main Pageand Find Information and Resources at our Website.
Community (Cambridge Dictionary)
“all the people who live in a particular area, or a group of people who are considered as a unit because of their shared interests or background.”
Vision (Cambridge Dictionary)
“the ability to imagine how a country, society, industry, etc. could develop in the future and to plan for this.”
Everything starts with a Vision that grows through collaborative thinking and culminates in the birth of a new Community! Today we hear from Jennifer Knapp, Executive Director at Community Vision in Portland, Oregon. Jennifer takes us on a journey that starts with the birth of Community Choices in Champaign Urbana, Illinois and leads us to a well established Community Vision in Portland, Oregon. Along the way Jennifer shares the secrets of successfully creating an inclusive and supportive community embraced by persons with disabilities, their parents and family members.
Everyone benefits when all are included!
Many of us have experienced challenges obtaining employment. If you have a developmental or intellectual disability those challenges take on a whole new dimension. You have skills. You have abilities and interests. You want to “give back” to your community and be accepted for who you are.
But too often the world does not understand your value… or what you have to offer.
Today we speak with Dirk Bakhuysen with Beyond26 and Rev. Bill Gaventa who helped create Putting Faith to Work, the program Beyond26 uses to identify work opportunities and match individuals to jobs where they will feel valued as a team member.
I think you will find the Beyond26 approach to matching individuals with job opportunities exciting! When employers and job seekers put their faith to work, miracles often happen!
Important Links -
Further resources are located on Our BlogTake a look at Beyond26's websitefor more information about them
Our culture places great emphasis on rugged individualism. Our heroes and role models are risk takers who face overwhelming odds and obstacles but, in the end, through grit and determination come out on top. They prevail! (with considerable help from those working behind the scenes)
But behind every great and lasting accomplishment is a group of individuals who collaborate and create. They identify a host of challenges and obstacles and use their creative, collaborative genius to craft solutions to some of our most vexing problems. Like sharing models and best practices for affordable, sustainable and accessible housing to meet the needs of our I/DD community. While at the same time providing direction and support for individuals and community organizations to create new opportunities for disabled individuals to have a voice and a choice in where and with whom they wish to live.
Today's episode is about collaborative heroes. We speak with Desiree Kameka Galloway, the Director of the Autism Housing Network and the National Coordinator for the Coalition for Community Choice. Desiree and the folks she work with are making the world a better place for people with disabilities by featuring diverse options to fit individual needs and encouraging collaboration on the local, regional and national scene to grow capacity for those waiting for a home of their own.
Resources mentioned in this episode can be found ON OUR WEBSITE
Additional information can be found at the following pages -
Madison House AutismAutism Housing NetworkCoalition for Community Choice
Everyone wants to live a beautiful life, but in every life we are faced with challenges. Many of those challenges involve processing grief over the loss of a loved one, the loss of a relationship, or the loss of the dreams we had set for our lives. For parents providing care for children with developmental and intellectual disabilities there exists a whole new level of stress and unrecognized grief that can shatter our dreams and blind us to the beauty of life that surrounds us. With her new podcast CHANGING YOUR DREAMS, Parenting a Child with Special Needs and her Flight Club, Lara Kitts provides effective solutions for individuals to re-imagine their dreams, lower their level of stress, and navigate their life's path toward a beautiful life for themselves AND their entire family.Here is a link to our Website to learn more!
Legal planning is intimidating, but nobody wants to leave others on shaky ground. The key is a Well Laid Foundation, and friend of the show Dan Blauw is here to help us understand some of the important parts of that foundation building.
Please stop by this episode's BLOG for further information.
Take a look at some of the other episodes from DANIEL L. BLAUW, PLC, Attorneys and Counselors at Law
Creative Housing Optionswith Dan Blauw
What are ABLE accounts and how can they help you?with Sarah Kirkpatrick
There's a new way to support NLAWKI - Aside from Sharing and Subscribing to our podcast, we've just launched a new page for our episodes at Nlawki.supapass.xyz where you can continue to listen to our free podcast episodes, register for a free account to get updated whenever we upload a new episode, and, if you so, choose become supporter by signing up for a monthly contribution.
Part 4 of our Exploring Autism Series digs into what happens after 10 years old?
As usual our friends at Brains give us plenty of amazing information, and there is a followup powerpoint ON OUR BLOGso stop on by and follow along!
This is our last interview with Brains for Season 1, but if there is something you'd like us to investigate, send us an email at Contact@nlawki.com
We return with our 2nd episode about Charting the life course, a more intensive way to plan for the future that is applicable to ANYONE!
Please follow along on OUR BLOG and let us know if you have anything else you'd like us to research by emailing Contact@nlawki.com
Join us as we discuss "Charting the Life Course" with Resource Analyst Tracy Vincent in our 2 part series about this wonderful framework that can be applied in everyone's life!
We've posted the slides discussed in this episode on OUR WEBSITE!
Tax Season is here and at the request of a listener we've reached out to the ARC of Oakland County's Executive Director Tom Kendziorski Esq. to go over their incredibly helpful tax guide! Find the resources mentioned in this episode HERE
Special Thanks to The Arc of Oakland County for promoting this guide and Tom Kendziorski for taking the time to join us on this episode and all his years of service to the disability community.
Here is a link to the ARC of Michigan's Tax Guide
"This authoritative income tax guide has proven invaluable for families and individuals concerned about tax deductions and credits related to the care and support of a child or an adult with an intellectual or developmental disability. After forty-seven issues, this booklet has become an annual “must-have” for the informed parent."
Today's episode provides some tips on how to effectively reduce stress and improve communications within families living with ASD and other developmental disabilities. This podcast is based upon the Effective Parenting Series "Putting the Pieces Together" workshop presented by BRAINS Potential in Grand Rapids, MI. LEARN - ENJOY - SHARE and subscribe to Navigating Life As We Know It
Resources mentioned in this episode are available ON OUR WEBSITE!
Reach out to us at contact@NLAWKI.com
Let us know what you want to see in the future
Few people enjoy walking on a tightrope, but that is what working while depending on SSI for benefits feels, lose your balance and everything falls to the floor.
We continue our episode with Hillary Hatch, helping us to understand the work incentives offered through SSI. Resources mentioned in this episode can be found ON OUR WEBSITE
Most government benefit programs are infused with a level of complexity that is inappropriate for the faint of heart. Social Security is no exception., This episode is part 1 of a 2 part interview with Hillary Hatch a specialist in disability benefits with the Social Security Administration. I thought I knew all about SSI, SSDI and disability work incentives. I was wrong. I learned a lot doing this interview. Enjoy!
Today, Navigating Life As We Know It explores how Disability Rights Michigan (DRM) advocates and DRM lawyers advise individuals with disabilities of their rights and responsibilities while they advocate for their human, civil and legal rights within the state of Michigan. DRM has broad access authority to monitor institutions and advocate for people with disabilities who live in them. And they are here for you!
Today we're back with our friends at BRAINS to discuss autism between ages 0 and 10 as part of their workshop program.
This is the 20th Episode of NLAWKI and the 2nd out of 4 episodes with BRAINS. If you'd like to see us focus on any specific content please reach out to us on Facebook and let us know!
Join our discussion with Together For Choice national director Amy Kim and board chair Scott Mendel as we delve into the complex choices around housing and the principles of choice for the disability community.
Therapeutic Riding can be incredibly helpful for many individuals, but we've always wanted to know more about why horseback riding can be so helpful. Thankfully we have a riding center here in West Michigan that was more than willing to sit down and chat with us.
Take a look at our friends at RENEW!
Visiting with our friends at BRAINS we dived into the first part of their program by trying to understand the Diagnostic Criteria and Mind-Body Connection related to Autism.
Check out OUR WEBSITE and join us on Patreon to support the show!
Join us for a discussion about ABLE accounts with Sarah Kirkpatrick.
If you're dependent on SSI, at this time you are limited to less than $2,000 in significant assets and savings, but we all know that costs sometimes greatly exceed that relatively low limit, which is where the ABLE Act of 2014 comes in!
Learn about these useful tools to help protect your family long into the future!
Visit Dan & Sarah's website here - http://www.blauwkirkpatricklaw.com/
Check out our Facebook Page and Group for more information!
Today NLAWKI Welcomes Micaela Connery, CEO and founder of The Kelsey. Micaela will share their work in advancing disability-forward housing solutions through development, advocacy, and partnerships that open doors
to more affordable homes and opportunities for everyone. The Kelsey's unique approach reinvents the wheel of housing strategies by creating inclusive, affordable and accessible housing via a collaborative process that includes stakeholder engagement. There are many paths to the complex problem of affordable and inclusive housing, and this is one of them. We look forward to presenting more innovative solutions like The Kelsey and encouraging consumer involvement in the creative process.
*WARNING
The topics in this episode might not be suitable for everyone. This episode covers the period of time during which one of the twins passes. This is an intense and very raw subject that is addressed directly. Please use your best judgement.*
Join Steve, Kerry, and Alex as they discuss the events that brought their family into the disability community and eventually led to this very podcast.
No matter how your journey with disability began, we all have a story, and we all share certain traumas. We are sharing our story to help others know they're not alone. Our goal is to fight the isolation that seems to soak into the very bones of the disability community.
How can our loved ones ever find a community if we cannot build bridges with each other?
We take a dive into Michigan Rehabilitation Services programs and offerings with Vocational Rehabilitation Counselor Cassaundra Wolf.
Steve's visit with Attorney Dan Baluw, discussing the various legal aspects of Housing for people with disabilities!
Part one of a special miniseries that will be aired on key dates, Navigating Life with Lliam is a walk through of the experiences and circumstances that have defined our own journey and eventually led to Navigating Life as we Know It!
Take a few steps towards understanding Grassroots activism with local organizer, lawyer, and candidate for state legislature Lily Chen Schulting.
When discussing Ableism, Media, and how they interact, there are few people as qualified Dr. Beth Haller, so of course we went and got ahold of her and from that comes an episode in a slightly different format than our usual style
Earlier this year we met with Brett Williams and went over several bills currently moving through various legislative circles that will have an impact on several aspects of life for individuals with disabilities and their families. Learn a little about what may be coming and how you can get involved on our first official 'legislative update' episode!
Early in our Podcast journey we had the pleasure of touring the Friendship Circle location in West Bloomfield Michigan, seeing the work done at the Soul Studio, and enjoying a nice lunch at the Soul Cafe, and as we left we decided to ask for a chance to meet with the Executive Director of the program - Rabbi Levi Shemtov.
For more information about the Friendship Circle - https://www.friendshipcircle.org/
Nearly every special needs parent or caregiver has heard at some point the acronym HCBS or mention of the venerable Olmstead Act, and Michigan DD Council Legislative Liaison Brett Williams is bringing the goods to help us all understand these crucial points in the modern understanding of the Disability Rights Movement!
Steve talks to the Executive Director of the Michigan Developmental Disabilities Council Vendella Collins about the Council, what it does, and what that means to you, and for our non-Michigan listeners, there's a council near you, so hopefully our connections here can help you make connections there!
"The Michigan Developmental Disabilities Council is an advocacy organization that helps people with developmental disabilities have the opportunities and support to achieve their full potential and life dreams."
Part two of our interview with Jackie Eddy and Ann Sickon of the Center for Independent Futures is about The Full Life Model®. The tasks of everyday living often leave us exhausted but unfulfilled at the end of the day…or sometimes even feeling trapped on a treadmill, bored of dull routine and generally dissatisfied with our lives. It is easy to fall into a routine that becomes task specific with little time to pursue that which brings us meaning, a sense of purpose…and joy. Yet, everyday life presents us with things that must be done! However, a “Full Life” is mindful of the need for balance. For spending some time each day with the activities and the people who are important to us. So that at the end of the day we still may feel exhausted, but we also feel accomplishment… and look forward to the adventures tomorrow will bring.
This is what The Full Life Model® is all about. Planning life and our daily schedule around the things that must be done, balanced with the activities that bring us meaning and purpose and the people who bring us joy. The Full Life Model® is a great tool to assist individuals living with developmental and intellectual disabilities plan their lives. But quite frankly, it is an excellent model for everyone who wishes to live a more full and vibrant life.
One of our first interviews back in October 2019, Steve's interview with the Center for Independent Futures (CIF) Executive Director Ann Sickon and New Futures Initiative Consultant Jacqueline Eddy hits on many topics related to the somewhat scary step of "leaving the nest" for Individuals with disabilities.
For more info on the Center for Independent Futures - https://independentfutures.com/
Part 2 of our interview with Liz Bauer.
This is our interview with a pioneer in disability rights, self-determination and inclusion. Liz Bauer, a woman of uncommon determination and courage, identified the inequities experienced by people with disabilities and fought for the full expression of their rights, refusing to settle for less. This is a story of her 60+ year experience blazing a trail of innovation while making a world of difference for those who would follow.
Thank you Liz!
Help Support NLAWKI by becoming a Patron at https://www.patreon.com/NLAWKI
Elizabeth "Liz" Bauer has been fighting for disability rights on the ground from the very beginning. Liz is a legal advocate for disability rights nationally and internationally starting the 1980s. She has consulted in the United States and internationally on the development of public policy, services, human rights, and support for people with disabilities. She has testified before Congress and the Michigan Legislature and assisted in the development of legislation and public policy related to people with disabilities. She continues to be maverick fighting for a more inclusive world.
Help Support NLAWKI by becoming a Patron at https://www.patreon.com/NLAWKI
The first look at Navigating Life as we Know It. This is a "special" episode where Steve and Kerry talk a little about what can be expected in upcoming episodes.