Parenting Impossible – The Special Needs Survival Podcast: Recent Episodes
Annette Hines
Parenting: Impossible – The Special Needs Survival Podcast is a podcast dedicated to giving compassionate advice for all stages of life. Our conversations revolve around the entire special needs community including those with autism, intellectual disabilities, physical disabilities, mental health issues and more.
Parents and experts (and sometimes parents who are experts!) discuss a whole host of issues facing the special needs community including raising children with different abilities, transitioning into adulthood, sibling challenges and how to effectively navigate the complex systems in our world.
We offer inspiration, support, expertise and a wide range of discussions that will help you survive and thrive as you support your loved one with special needs. Imagine yourself having coffee with a friend and discussing all the important challenges in your life – but your best friend is an expert!
Hosted by Attorney Annette Hines, special needs mom, author of the best-selling book Butterflies and Second Chances, national expert speaker, writer and contributor to publications, and founder of the Special Needs Law Group based In Massachusetts, Annette has regular guests that include experts in the field of special needs, siblings that offer stories and survival tips with a positive message.
It can be difficult for families to find fitness classes oriented toward individuals with different abilities, whether neurodivergence or physical. However, an emerging fitness category is designed for those who need adaptive and inclusive therapy.
On this episode of Parenting Impossible, Annette sits down with guest Karen Hurley, a physical therapist and strength and condition specialist with more than 20 years of experience. Karen received a bachelor’s degree in educational studies from Brown University, where she was a varsity athlete and captain of the women’s gymnastics team. She then received a master's degree in physical therapy from Boston University. Karen has worked in various settings and spent the past eight years as a districtwide physical therapist for a local school district. Karen is the founder and president of A.I.M. Therapy located in Needham, Massachusetts, which offers adaptive inclusive movement therapy, including CrossFit and functional fitness sessions for kids, teens, and adults with autism, ADHD, processing challenges, and anxiety.
Annette and Karen explore Karen’s background as a physical therapist, creating connections with students, and how that ultimately led to her establishing her business, A.I.M. Therapy. You’ll also hear what makes CrossFit an inclusive and adaptable activity, who she works with, and what Unified Sports is. Karen explains how the goals of her business have changed since founding it, what makes A.I.M. unique, and why CrossFit benefits neurodiverse athletes. Finally, she outlines how A.I.M. meets clients where they’re at, her encouragement for someone hesitant to attend these classes, and what you can do to get started with adaptive and inclusive therapy in your community.
Adaptive and inclusive therapy can tremendously impact communities where it’s offered. Karen Hurley is excited to share the difference it can make for individuals with different abilities.
In this episode, you will hear:
- Karen Hurley’s background working as a physical therapist with students, creating meaningful connections with them, and how that led to teaching CrossFit
- CrossFit as a scalable, inclusive, and adaptable activity
- Why Karen works primarily with individuals with disabilities and how it led her to open her own business
- An explanation of Unified Sports and the Special Olympics
- How the goals of Karen’s business have changed over time because of the importance of community
- A.I.M. (Adaptive Inclusive Movement) Therapy and what makes it unique from other adaptive and inclusive classes
- A typical day at A.I.M. Therapy
- What differentiates adaptive and inclusive CrossFit from traditional physical therapy
- CrossFit’s variability and how that benefits athletes with neurodiversity
- Relative high intensity scaled to meet you where you’re at, which is functional fitness
- The encouragement Karen gives to those who are hesitant to attend her classes
- Her advice for those who would like to start their own adaptive and inclusive therapy in their communities
Resources from this Episode
- adaptiveaimtherapy.com
- www.facebook.com/profile.php?id=100093139387607
- www.instagram.com/aim_therapy
- www.linkedin.com/in/karen-hurley-9141b41a2
Follow and Review:
We’d love for you to follow us if you haven’t yet. Click that purple '+' in the top right corner of your Apple Podcasts app. We’d love it even more if you could drop a review or 5-star rating over on Apple Podcasts. Simply select “Ratings and Reviews” and “Write a Review” then a quick line with your favorite part of the episode. It only takes a second and it helps spread the word about the podcast.
Episode Credits
If you like this podcast and are thinking of creating your own, consider talking to my producer, Emerald City Productions. They helped me grow and produce the podcast you are listening to right now. Find out more at https://emeraldcitypro.com Let them know we sent you.
Navigating the complexities of the special needs community is fraught with challenges, and the current workforce crisis in the disability sector is a cliff we're all facing together. Annette has seen firsthand how the pandemic has eroded the support program landscape as a special needs mom, attorney, and author. It's time we discuss the dire statistics and what they mean for our loved ones. The scarcity of direct support professionals (DSPs) is at a critical point.
In this episode of Parenting Impossible, we're pulling back the curtain on the harsh realities service providers are grappling with, from program cuts to the tough competition for attracting dedicated workers. Yet, amidst the stark outlook, there's a glimmer of hope on the horizon.
Annette is excited to share the recent settlement poised to relieve SSI beneficiaries and the proactive steps the Social Security Administration is taking to rectify overpayment issues. But let's not lose sight of the impending expiry of federal funding that could spell a reduction in community-based services. It's a heartfelt plea for awareness and action—we must bolster the ranks of DSPs and ensure the support structures our community relies on don't crumble. Your involvement is critical, and by sharing your thoughts and spreading the word, you can help ignite the changes we so desperately need.
Join me in this crucial conversation, and let's pave the way toward a more supportive future for those with special needs.
In this episode, you will hear:
- The critical workforce crisis in the disability sector post-pandemic
- Some personal insights from Annette
- An examination of the direct support professional (DSP) shortage and service program cutbacks
- Recent settlements benefiting SSI beneficiaries and SSA's resolution of overpayment issues
- The implications of expiring federal funding from the American Rescue Plan on community-based services
- The need for legislative action to stabilize the DSP workforce and ensure sustainable disability support
Follow and Review:
We’d love for you to follow us if you haven’t yet. Click that purple '+' in the top right corner of your Apple Podcasts app. We’d love it even more if you could drop a review or 5-star rating over on Apple Podcasts. Simply select “Ratings and Reviews” and “Write a Review” then a quick line with your favorite part of the episode. It only takes a second and it helps spread the word about the podcast.
Episode Credits
If you like this podcast and are thinking of creating your own, consider talking to my producer, Emerald City Productions. They helped me grow and produce the podcast you are listening to right now. Find out more at https://emeraldcitypro.com Let them know I sent you.
Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.
As the clock struck midnight, marking the start of a new year, Annette found herself immersed in a flood of memories and significant events.
On this episode of Parenting Impossible, carrying the weight of sorrow from the loss of her beloved daughter Elizabeth but strengthened by ten years of affection and the development of the Special Needs Law Group, Annette extends an invitation to you to partake in a personal journey of transformation and the intricate process of decision-making that defines our lives. Annette shares a cherished story from her childhood, in which setting a butterfly free symbolized the infinite potential of wishes. This experience profoundly shaped her perception of influence and purpose in her life and career.
Annette communicates her hope for the coming year—a desire for empowerment and the capability to navigate the often stormy seas of social support systems. Eager to improve this process, she is excited to announce the launch of new group coaching programs designed to offer a guiding light of support, consultation, and advice beyond the scope of traditional legal services. You will sense this podcast's renewed vigor, infused with the energy to spark change and foster connections through these shared coaching experiences.
Annette welcomes everyone to join her as they confront the challenges and celebrate the victories in creating significant legacies for themselves and those they advocate for in the disability community.
In this episode, you will hear:
- Reflections on a decade of personal milestones: the loss of Annette’s daughter Elizabeth, her marriage, and the growth of the Special Needs Law Group
- The importance of transformation and the power of choices in personal and professional life
- A heartfelt letter from one of Annette’s clients and the profound impact of the Special Needs Law Group on the lives of those in the disability community
- Annette’s New Year's wish for empowerment and enabling individuals to navigate social support systems and take control of their futures
- New group coaching programs offering support, consultation, and guidance to those seeking to create a secure and fulfilling plan for their lives
Follow and Review:
We’d love for you to follow us if you haven’t yet. Click that purple '+' in the top right corner of your Apple Podcasts app. We’d love it even more if you could drop a review or 5-star rating over on Apple Podcasts. Simply select “Ratings and Reviews” and “Write a Review” then a quick line with your favorite part of the episode. It only takes a second and it helps spread the word about the podcast.
Supporting Resources:
- Sign up for the Special Needs Advocacy and Planning Masterclass AND Coaching Program: enroll.specialneedsfamilyservices.com/p/individuals-family-caregivers-cohort-group-coaching
Episode Credits
If you like this podcast and are thinking of creating your own, consider talking to my producer, Emerald City Productions. They helped me grow and produce the podcast you are listening to right now. Find out more at
Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.
Sometimes, it’s essential to step back and assess the path we're on - that's exactly what I did this year. After years of fighting the impacts of a global crisis on both my personal and professional life, I made the radical decision to take a sabbatical year. A year to disconnect from “extracurriculars” and focus on my business, my team, and myself. A year to reflect on what truly brings me joy, and rediscover the activities and people I truly missed.
Join me as I recount the unanticipated benefits of this self-imposed sabbatical. Listen to how I navigated the process of refocusing my energy, honing my business, and fostering team cohesion. I'll share how this radical change led to the acquisition of new skills and realizations about my membership community. As I look back at the past year, I'll discuss my plans to gradually reintroduce aspects of my life, emphasizing only those that truly bring me joy. I'll also share my plans to revamp this podcast and my community outreach. This episode is a must-listen if you've ever considered a sabbatical or a reset in your life.
In this episode, you will hear:
- Why I decided to take a sabbatical year to refocus on my business, team, and personal growth.
- The impacts of the global crisis on my personal and professional life led me to the decision of a sabbatical year.
- Exploring new hobbies and skills, such as baking bread and playing golf.
- How I decided to revamp my podcast and community outreach based on the insights I gained during my sabbatical.
Follow and Review:
We’d love for you to follow us if you haven’t yet. Click that purple '+' in the top right corner of your Apple Podcasts app. We’d love it even more if you could drop a review or 5-star rating over on Apple Podcasts. Simply select “Ratings and Reviews” and “Write a Review” then a quick line with your favorite part of the episode. It only takes a second and it helps spread the word about the podcast.
Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.
Ever felt the pangs of frustration trying to navigate public spaces with a disability or care for someone who does? This frustration fueled the journey of an extraordinary parent advocating for change, Jayme Betts who serves as the Massachusetts Chapter Leader of the Changing Spaces Campaign. She shares an illuminating exploration of her mission to make public spaces more accessible for people with disabilities, inspired by her own experiences with her daughter, Sophia, who has Soto Syndrome. Jayme’s story is one of determination and resilience, as she used her personal struggle to fuel her advocacy for universally accessible changing tables. With the lack of adequate facilities, she was compelled to start a chapter of Changing Spaces in Massachusetts, a national organization dedicated to enhancing accessibility in public areas. She shares her experience with the transformative impact of using a universal changing table for the first time, adding a powerful, personalized perspective that only a parent facing these challenges could offer. Additionally, we delved into a potential solution that Jayme has championed – height-adjustable, secured changing tables with a significant support capacity. This innovation, which is set to be included in the International Building Code for 2024, could revolutionize the lives of individuals with disabilities. Jayme gives listeners a glimpse into her world of advocacy as she recounts her experience testifying before a joint committee, providing a firsthand understanding of the battles and triumphs on the road to making public spaces more accessible. This episode is a must-listen for anyone who seeks to understand more about the need for inclusivity and accessibility in our everyday spaces. Learn more about the Changing Spaces Campaign in Massachusetts: Website: https://www.changingspacescampaign.com/machapter Link Tree with Resources: https://linktr.ee/changing_spaces_ma Instagram: https://instagram.com/changing_spaces_ma Facebook: https://www.facebook.com/profile.php?id=100089054724819
Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.
What's one of the biggest issues most special needs families worry about? Housing. This episode unlocks the complexities of the intricate world of housing for those with some form of intellectual or developmental disability or (IDD) with the help of special guest, Pam Blanton, founder and CEO of Partners4Housing. Tune in to discover how Partners4Housing is changing the lives of families in Washington state by empowering families to create housing solutions that meet the unique needs of their loved ones with IDD and create a real solution for the future. Hear about Partners4Housing's unique roommate matching pool and shared living development services, and also dive into the challenges and strategies of a family-driven housing model. The figure of the caregiver stands central to our discussion as we unpack the various aspects of caregiver supports available and the importance of making the right choice. Housing issues can often feel daunting, but we've got you covered with discussions on Medicaid waivers and housing vouchers, serving up practical solutions for families in need. To cap it all off, we take a deep look into shared living for families and how to navigate through the legalities of setting up a home for a loved one with special needs. From landlord-tenant law to caregiver agreements and household budgets, we've got it all covered. And don't miss out on learning about our Circle of Care on Mighty Networks - a refreshing platform for our disability community to connect, learn, and share experiences. This episode holds key insights for anyone looking to understand better the housing landscape for adults with disabilities, so sit back, relax and let's get the conversation started.
Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.
What happens when a mother’s fierce love for her special needs child intertwines with her passion for photography? Magic! Join us on this heartwarming journey with Marcie Randall, a dedicated mother, and an exceptional photographer, as she turns her struggles and triumphs navigating the healthcare system for her medically fragile son into a beacon of hope for other families. Marcie's inspiring story combines advocacy, photography, and parenting in a way that's as enlightening as it is moving. Can capturing the moment make a difference? Absolutely! Marcie, through her business - Sunschein Photography, is on a mission to showcase the unique beauty of families with special needs. She generously shares her journey from being a parent and an advocate to becoming a photographer. We’ll explore the challenges of getting that perfect shot, and Marcie will reveal some of her secrets to preparing for a successful photo session. But more than tips and tricks, Marcie emphasizes the invaluable significance of family photos, especially for families like ours. We wrap up our conversation on a high note, appreciating Marcie's commitment to capturing authentic reflections of families with special needs and fostering a sense of belonging and understanding. So, sit back and join us for this enlightening chat as we delve into the world of special needs through the lens of a camera and see the beauty and resilience it reveals. Connect with Marcie Randall: sunscheinphotography.com facebook.com/sunscheinphotographywww.instagram.com/marcie_sunschein_photography
Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.
Could you imagine being a mom and an Assistive Technology Specialist, honeycombing through multiple strategies to craft tools that best support your special needs child? Well, meet Cheryl Farley. A passionate mother and a specialist who's spent years perfecting this very craft. She's graced us with her story, detailing the educational journey of her son, Liam, and the unique challenges they faced in his smaller classroom setting. Listen in as she shares the creative routes they took to find job opportunities for Liam, and the delicate balance they needed to maintain - allowing him to tackle challenges head-on, yet knowing when to pause and reassess.
Now, ever wondered how to navigate through disability resources and support confidently? Cheryl explains her journey working directly with Annette Hines through the SNAP (Special Needs Advocacy and Planning) masterclass and coaching program. She walks us through her experience in applying for SSI for Liam, and setting up a Circle of Care - a support system beyond the immediate family. Hear from Cheryl herself how the online application process can be tackled, and the importance of having a strong Circle of Care. This isn't just about learning the ropes, it's about gaining confidence, building relationships, and ultimately finding balance in a sometimes turbulent sea. Don't miss a moment of this enlightening conversation with Cheryl. It's a testament to the strength of love, persistence, and creativity in the face of adversity. Learn more about the SNAP course on a previous episode, "Designing a Disability Support Plan for Independent Living."
Check out the Special Needs Academy SNAP masterclass online, which is applicable for anyone with special needs transitioning their services or caregivers: https://enroll.specialneedsfamilyservices.com/p/advocacy-planning-masterclass
If you have questions about the course or coaching programs, we invite you to schedule a call with our team here: calendly.com/imartinez-31/specialneedsacademy
Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.
The intensity of grief can feel like an insurmountable mountain. A profound loss, the passing of Host Annette Hines' beloved daughter, Elizabeth, led her down a path of unimaginable pain, reshaping her identity as a mother and her life. Through the waves of grief, Annette discovered a lifeline in a local grief group, offering a haven where she could share, cry, and heal. This episode serves as an open invitation to join in Annette's journey of remembrance, honoring suicide prevention month, and emphasizing how simple acts of kindness can make a world of difference.
We all have a role to play in suicide prevention. It's about staying connected, ensuring safety, and assisting those in need. Annette shares her personal experiences with suicide, depression, and the transformation that followed Elizabeth's death. She also discusses the importance of getting involved at the local level and recommends resources available at 988lifeline.org. As we journey through this heart-wrenching topic, we hope to inspire listeners to be vigilant about suicide prevention, supporting those who are struggling, and honoring those we've lost. In the end, it comes down to kindness, compassion, and the courage to reach out to those in need.
Crisis Resources:
- If you or someone you know is experiencing a mental health crisis, call or text 988 immediately.
- If you are uncomfortable talking on the phone, you can chat the Suicide & Crisis Lifeline at 988lifeline.org.
- Learn the warning signs of suicide.
Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.
Are you ready to uncover the mysteries of sensory processing disorder? We're elated to have certified occupational therapist assistants, Rachel Harrington and Jessica Hill, founders of Harkla Co in Boise, ID, on our show today. These remarkable women have recently become Certified Primitive Reflex Clinical Specialists, demonstrating their relentless pursuit of knowledge in the field of primitive reflexes. They're here to share insightful perspectives on what it means to be a COTA (Certified Occupational Therapist Assistant) and the significance of a synchronized treatment team.
Pull up a chair as Rachel and Jessica shed light on the intricate process of how our bodies and brains decipher eight senses, and the challenges that surface when this process hits a snag, a condition known as sensory processing disorder. They've got practical tips in their arsenal to recognize and manage this issue. As the conversation flows into the realm of sensory diets and advocacy, Rachel and Jessica offer invaluable suggestions for parents and educators to create an environment that nurtures learning for children grappling with sensory processing disorder.
Wrapping it all up, we delve into the crucial topic of supporting children with sensory needs. Our guests emphasize the need for open, clear communication between parents, educators, and professionals to ensure successful execution of sensory diet plans. They share wisdom on connecting with your child and setting an exemplary standard in emotional regulation. They prompt listeners to embark on this journey with a sensory checklist, a tool that aids in comprehending a child's sensory preferences. Remember, it's about taking one step at a time. So why wait? Tune in and make use of the treasure trove of resources available at Harkla.
Connect with Rachel and Jessica at Harkla:
Website: harkla.co
Facebook: @harklaproducts
Instagram: @harkla_family @allthingssensorypodcast
YouTube: @HarklaFamily
Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.
Have you ever wondered about the unique life experiences of siblings of special needs children? We promise to enlighten you on this rarely discussed topic, as we welcome two individuals who've lived this reality -- Hillary Dunn Stanisz, a senior attorney at the Disability Law Center in Boston, and Alexandria Nadworny, a special needs financial planning specialist. Through a candid conversation, they share their personal journeys growing up alongside a special needs sibling, deciphering the balance of their own needs with those of their sibling, and the importance of a robust support network. This is a re-release of one of our earliest episodes.
Our dialogue evolves to discuss the unique dynamics that exist within a family having a child with special needs. Hillary and Alex delve into their childhood memories, talking about their siblings' pervasive medical challenges and the emotional impact it had on them. They shed light on how open communication within the family unit is pivotal and explain how they often had to play multiple roles, including the unexpected one of a quasi-parent.
Wrapping up our conversation, we share some practical advice for parents to ensure their typically developing children also have positive experiences. Focusing on tailored approaches, addressing potential feelings of jealousy, and promoting healthy relationships outside the family, we offer a comprehensive guide to managing these unique situations. Hillary and Alex reveal their fears of predeceasing a sibling with special needs and the hurdles of long-distance caregiving, while striving to maintain a balance with their personal lives. Come, join us for a heartfelt conversation on this compelling and unique subject.
You can find https://www.masiblingsupport.org/
Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.
In an emotionally charged conversation with Eric Jorgensen of True North Disability Planning, we venture deep into the heart of community and its indispensable role in special needs parenting. Through recounting her own journey with her daughter Elizabeth, born with a mitochondrial defect, Host Annette Hines unveils how community acted as their family lifeline, providing a shared belief system and collective elasticity to push forward. Eric, embodying his Navy ethos, emphasizes the value of a supportive community, a nurturing fixture that provides control and personalization, strikingly different from social media's impersonal landscape.
Driven by our shared experiences, we're excited to introduce our latest venture - a membership-based community platform. This is more than just a gathering spot; it's a space designed to bring resources together, fostering inclusivity and support. In our discussion, we dissect the potential of a community-based platform and how it allows users to personalize their experience, connect on a more profound level, and access vital resources. We invite service representatives to engage in sincere Q&As, moving beyond sales pitches to provide meaningful insights to the community.
To conclude, we extend an invitation to continue this enlightening conversation on Mighty Networks, our newly launched platform. It's a safe space to learn, share, and express ourselves as we navigate the challenging journey of special needs parenting together. As we embark on this transformative journey, we ask, "What does community mean to you?" We're eager to hear your thoughts, experiences, and insights as we work together to build a community that serves us all. Share your thoughts with us on our website: https://specialneedscompanies.com/podcasts/
Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.
Navigating the unknown waters of parenting a child with autism can feel like being adrift without a compass. In this dynamic conversation, we had the privilege of speaking with Joya Vandalan, a mother of three and a family nurse practitioner, who found her North Star in the midst of her own experiences raising a child with autism. Joya not only breathes life into the challenges she faced as a first-time mother and healthcare professional, but also shares her journey of creating Autsim Game Plan - a business born out of necessity, resilience, and unyielding love for her children.
Joya's perspective is enlightening, as she weaves tales of her personal experiences with integrative and functional medicine, and how it has shaped her approach to managing her daughter's autism. You'll hear her discuss food allergies, medication allergies and the hurdles she jumped over to establish her functional medicine practice, which she firmly believes can help others navigate their unique health challenges. There's an authenticity in her voice that resonates when she talks about her struggles and victories in starting her own practice, juggling her family life, and the invaluable lessons she's learnt along the way.
We also get into the nitty-gritty of healthcare options for children with special needs, a topic that often leaves parents feeling overwhelmed and uncertain. Joya sheds light on how to make informed decisions, offering her insights and experiences in a way that's tangible and actionable. We round off this conversation by underscoring the importance of sleep for both parents and children - something that's often overlooked but is paramount for everyone's wellbeing. Join us for this enlightening conversation that's sure to leave you feeling informed and inspired - whether you're a parent of a child with special needs or a healthcare professional seeking to understand more about functional medicine.
Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.
Knowing where to start with estate and special needs planning can be an intimidating task. However, don't be daunted, because this episode is your lifeline to understanding and managing this process effectively. Host Annette Hines breaks it down, simplifying the complexity, and presenting you with a three-pronged approach to life planning - estate planning, guardianships and legal authorities, and advocacy and public benefits. Plus, she share insightful tips on seeking the right professionals who can help steer your journey and provide the support you need.
Diving into the heart of planning, Annette unearths a sequential method to grasp, prioritize, and act upon each aspect. The first step is about identifying the people in your life who can support you and your loved ones and be there when you can't. The second step is about outlining your circles of support, or Circle of Care, with a list of all of their names and contact information. The third step relates to creating an overview of your financial situation and answering questions like: What do I own? Where are my assets? What are my debts? What types of work benefits do I need to explore more like long-term care insurance? Mapping out these three elements is a great start to preparing to create a more comprehensive special needs estate plan.
Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.
Navigating the back-to-school season can be a significant challenge, especially if your loved one is living with disabilities. As a mother of a profoundly disabled daughter, Elizabeth, Host Annette Hines has learned that preparation is everything. From creating checklists to setting achievable goals, we explore how to keep things in order, ensuring a smooth transition. This episode shares the story of Annette's journey and how it led her to become an advocate for the disability community.
The second part of our discussion is equally important - understanding the procedures, expectations, and the art of communication when it comes to dealing with care providers. We discuss the importance of asking questions, comprehending policies, and setting up effective communication channels. We also shed light on the significance of touring the school or program setting for identifying potential issues. It's not just about getting ready for a new school year, it's about building an environment that fosters understanding, awareness, and compassion. Whether you're a parent, caregiver, or just interested in the trials and triumphs of the disability community, this episode promises to enlighten and empower you to be an advocate for your disabled person.
Find a comprehensive Back-to-School checklist on our website to use for yourself or your family as you prepare fora new school year.
Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.
This episode is a re-release of a previous episode that aired in May 2020 in remembrance of Annette Hines' daughter Elizabeth who passed away from mitochondrial disease in 2013. Hines reflects on the heartwarming and sometimes heart-wrenching journey of being a special needs parent that involves joy, silver linings found in loss, and the challenges of moving on. Reflecting the start of the Parenting Impossible podcasting, Hines shares her enlightening conversation on Sydney Weiss's Seek the Joy podcast. Hear about Hines' book 'Butterflies and Second Chances', and the extraordinary experience of raising her beautiful daughters, Elizabeth and Caroline.
Navigating through grief and loss while still maintaining a connection with the special needs community has presented its own set of trials. Hear how this has impacted Hines' daughter Caroline and her experience growing up with a sibling with special needs. With your invaluable support, the podcast has grown and evolved, and your feedback and reviews continue to shape its future. Together, we've created a nurturing community; let's continue sharing our experiences, growing, and finding strength in our stories.
Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.
Hold your breath as you plunge into an awe-inspiring journey with Raja Marhaba, a fierce advocate for children with special needs. Embark on a monumental David and Goliath journey that showcases a mother's determination in the face of adversity. Raja's struggles with a broken special education system and her relentless pursuit of justice for her children are nothing short of extraordinary. Hear her riveting story as she fearlessly battled her way to the Ninth Circuit Federal Court and bear witness to the sacrifices she made for her children's rights. She documents her experience and what she learned in her book, Unstoppable: A Parents' Survival Guide for Special Education Services with an IEP or 504 Plan.
Travel further down Marhaba's 26-year journey as she highlights the pitfalls and power dynamics of a faulty special education system. Feel the weight of the financial costs and the resilience required for navigating these murky waters. This episode unfolds the strength of a parent's love, shedding light on the lengths one will go to ensure their child's right to a free and appropriate education. Marhaba's compelling narrative serves as a beacon of hope for those embarking on a similar path.
Finally, you'll be privy to her transformative journey from middle-class living to becoming a relentless advocate for education. Learn about the faith that kept her going, her pro bono work, and involvement in the fight against child trafficking. Join us to revel in the power of advocacy and resilience. This is an episode that is bound to leave you inspired and educated.
Connect with Raja Marhaba:
Website: https://thejonathanfoundation.org/en-us and https://unstoppableadvocacy.com/About
Facebook: https://www.facebook.com/TheJonathanFoundation
Instagram: https://www.instagram.com/thejonathanfoundation
LinkedIn: https://www.linkedin.com/in/raja-marhaba-5a985b14
Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.
As a broadcaster, radio host, and digital media veteran, Tamara Taggart is no stranger to the spotlight. But it's her role as a mother and advocate for her son Beckett, diagnosed with Down syndrome at birth, that propels this episode into an insightful and heartfelt journey. Tamara candidly shares the battles she's faced, from the negativity of medical professionals to fighting for Beckett's education in a system not designed to accommodate his needs. This story of resilience, love, and the power of advocacy aired originally in November 2020, and is being re-released to encourage others to fight for meaningful inclusion for those in the disability world.
When her son Beckett was born, Tamara Taggart was thrust into a world she hadn't anticipated. Shocking diagnoses, disheartening attitudes, and daunting educational challenges became her reality. Yet, through it all, Tamara stood firm, demanding dignity, respect, and meaningful inclusion for Beckett. She confronted a culture of low expectations and fought to change the narrative for her son and others like him. This episode sheds light on the reality of raising a child with Down syndrome, the struggles families face, and the relentless pursuit of equality.
Language matters. This is a reality Tamara knows all too well. From a distressing diagnosis about her daughter to the language used in disability advocacy, words have a profound impact. Host Annette Hines had a similar experience with her daughter, Elizabeth. During an appointment with a neurologist early in Elizabeth’s life, he likened Elizabeth’s brain to “Swiss Cheese.” For a young mom watching her child fight for her life, those words cut deep, similar to how Tamara felt hearing the words Beckett’s doctors used to describe his condition.
Tamara's resilience, courage, and unyielding commitment to her son Beckett's well-being will inspire and move you. This isn't just about Down syndrome; it's about humanity, empathy, and the way we treat each other.
You can learn more about Tamara on her website and connect with her on Facebook, Twitter and Instagram. Join Annette’s Facebook Group, “Circle of Care” to be a part of a group of parents sharing encouragement and resources for children with disabilities.
Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.
Celebrating the 33rd anniversary of the Americans with Disabilities Act, we're taking a deep look into ableism and its effects on disability rights. Host Annette Hines is joined in this conversation by Peter Morin, an attorney from the Special Needs Law Group who is committed to providing a voice for the vulnerable and ensuring they receive the essential services they need. By battling the discrimination that stems from the misguided notion that individuals with disabilities are inherently inferior, we aim to make a change, and you can help, too, by spreading awareness with the hashtag #ADA33.
Navigating state agencies and organizations can be a daunting task, but Peter shares his invaluable insight on the matter. Do you know the importance of strategic planning, asking the right questions, and the precision required while filling out forms? Peter underscores these crucial elements, reminding us all that expressing urgency can potentially prioritize your case, providing needed waivers and exemptions. This episode also shines a light on the challenges families face while providing proof of their loved one's disability and the importance of having the right paperwork at hand.
Peter also talks about the power of gratitude. In the seemingly small act of saying thank you, we can forge stronger bonds and make a difference in the lives of those striving to improve the world for individuals with disabilities. Peter encourages us all to take action, no matter the scale, because every small act contributes to changing lives, one life at a time. So, join us in this crucial conversation and be a part of the change.
Have you been searching for a law firm that understands the unique challenges of your family? We can help you at Special Needs Law Group put legal planning in place to protect you and your loved ones now and in the future. Book a free call today with our team or contact us via our website: specialneeds-law.com/contact.
Who doesn't seek the comfort of familiar surroundings when dealing with life’s complex challenges? This sentiment rang true for Host Annette Hines during this heart-to-heart with Jessica Guzman, an extraordinary ABA (Applied Behavioral Analysis) therapist and behavioral consultant.
They unravel the profound sense of solace found in the natural environment and Annette's own personal experiences with her late daughter, Elizabeth. They delve into the thrilling world of ABA therapy in autism, offering insights into the journey of becoming a BCBA, modifying environments to influence behavior, and diverse approaches to ABA.
They also take a unique dive into the world of Behavior Analysis, highlighting the distinct roles of a BCBA and a behavior consultant. Jessica gracefully details her role of empowering parents and caregivers to take up her job, and the ultimate goal of clinicians to reach a point of termination and transition towards natural support. She elevates the conversation with her goal of making applied behavior analysis more accessible, providing caregivers with the tools to avoid challenging behaviors and a gentle reminder to be kind to themselves.
The final segment takes a reflective turn as we share our thoughts on life's imperfections, the comfort of familiar connections, and the shared joys and challenges of parenting. Jessica and Annette discuss the joy of witnessing parents teaching their children, the immense pride it brings, and the necessity for compassion in the time of a pandemic. They wrap up with a fun conversation about traveling woes, the pressures of portraying perfect lives on social media, and the simple pleasure of sharing a homemade apple pie.
We promise you an episode filled with laughter, poignant moments, and enlightening discussions. Tune in as they navigate the intricate maze of autism, behavior analysis, and above all, parenting.
This episode was originally recorded in September 2020, yet the recommendations from Jessica still apply to parents of autistic children today.
Let us know what you think of this episode! Leave your comments or requests for new topics on our website: specialneedscompanies.com/podcasts
Have you ever wondered how a powerful support system can change the life of someone with a disability? Join Host Annette Hines in this passionate conversation with Susan Kahn, the brains behind Sue's Strategies, as we take a deep-dive into the significance of community for those navigating life with disabilities. They explore the trials and tribulations of Annette's personal journey within this community, and share her mission to empower, engage and educate others.
Susan Kahn, a revolutionary reading specialist, shares her captivating journey to transform how we approach reading in schools. Drawing from her experience with her third son who was born with learning disabilities, she shines a light on the power of phonics. Making a second career out of her passion, she entered private practice and has written 18 texts for sale on amazon; 53 free, animated videos; and 755 free blog articles to share her knowledge. They delve into her unique system of teaching children to learn flashcards and syllabicate words in just “five minutes a day”, her “two rules of syllabication,” and the importance of bringing this instruction to higher education.
In a society where reading is often the gateway to success, Susan discusses the profound impact reading difficulties can have on self-esteem and life outcomes. She talks about her innovative five-step process that utilizes phonemic awareness and memory strategies to help children learn to read, including those with learning disabilities. They discuss the urgent need for change in our education system and the potential implications of passing two bills now in the Massachusetts state legislature: S263 and H 579, “An Act to promote high quality comprehensive literacy instruction in all Massachusetts schools" that would require schools to use the science of reading. Be sure not to miss out on this conversation about revolutionizing education, the power of community, and much more.
Connect with Susan Kahn:
Website: https://www.suekahnreadnow.com/
Reddit: https://www.reddit.com/r/LearningStrategies/
Facebook: https://www.facebook.com/suesstrategies/
Twitter: https://twitter.com/SuesStrategies
LinkedIn: https://www.linkedin.com/in/susan-kahn-442a6628/
YouTube: https://www.youtube.com/channel/UCrvy_WQEjY21VVHmJl9jQKg
Blogger: http://suekahnreadnow.blogspot.com/
Let us know what you think of this episode! Leave your comments or requests for new topics on our website: specialneedscompanies.com/podcasts
Do you know what to do with your estate planning documents? Are you sure your assets will be distributed as per your desires? Join Host Annette Hines, and her husband and law partner, Mark Worthington, as they reveal the complex and often bewildering realm of estate planning, focusing especially on how to adequately fund your estate plan. They will decode the impact of trusts, wills, and other documents on diverse types of assets, highlighting the paramount importance of arranging ownership and designating beneficiaries aptly to secure your goals.
Beyond the basics, they will explore the intricate challenges of planning for the division of your assets among your children, especially when you have to balance between typical and disabled children. They provide practical advice on assigning specific assets like a house or a vehicle to the special needs trust, the significance of letters of intent, and the right time to transfer assets to the special needs trust. In honor of their brave little Chihuahua, Trixie, who recently underwent surgery, Mark and Annette hope to empower you with the same strength and knowledge to ensure a secure future for your loved ones. Join them on this enlightening journey to properly fund your estate plan.
Ready to start mapping out your future? Check out our online Special Needs Estate Planning Masterclass! It provides all the tools you need to create a plan to protect you, your special needs loved one, and all your assets.
Let us know what you think of this episode! Leave your comments or requests for new topics on our website: specialneedscompanies.com/podcasts
Are you ready to untangle the complexities of transition planning and become an effective advocate for your disabled person? Host Annette Hines, founder of Special Needs Law Group and Special Needs Family Services brings you an episode that can be a beacon to guide you through the maze of supports and resource systems. Whether you're a young disabled person stepping into adulthood, a caregiver stepping in for a sibling, or a professional wanting to offer the best for your clients, this episode promises to be a haven of insights.
Let's begin by exploring person-centered planning. Identifying key questions, making sure the disabled person's voice is at the center of the life plan, and putting together an appropriate support team are all vital. But that's not all! We move forward into the unknown terrain of flexibility in planning and the pivotal role of evaluations and assessments in making transition as smooth as possible. There's also a discussion about how to navigate public benefits, housing, and state agencies, and even the legal decision-making process including understanding guardianship, supported decision-making agreements, power of attorney, and healthcare.
Lastly, we invite you to check out and enroll in our exciting online transition planning course, the Special Needs Advocacy & Planning Masterclass (SNAP). Designed for parents, caregivers, professionals, or disabled adults, this on-demand course offers the ability to design a personalized disability support and life plan through video modules, a course and workbook. With the optional group coaching sessions, participants receive an individualized support network and a platform to discuss and learn from others embarking on the same transition journey. We look forward to welcoming you on this journey to become an empowered advocate!
You can check out the course online and even get a free Disability Support Plan Worksheet: enroll.specialneedsfamilyservices.com/p/advocacy-planning-masterclass
If you have questions about the course or coaching programs, we invite you to schedule a call with our team here: calendly.com/imartinez-31/specialneedsacademy
Let us know what you think of this episode! Leave your comments or requests for new topics on our website: specialneedscompanies.com/podcasts
In this episode, Annette Hines had a great conversation with Rosemarie Griffin about helping autistic student in finding their voice with ABA SPEECH. Rosemarie Griffin, MA, CCC/SLP BCBA, is an ASHA certified Speech-Language Pathologist and Board Certified Behavior Analyst. She founded ABA SPEECH, providing courses, consultations, and products to support autistic students in finding their voice. Rose hosts the Autism Outreach Podcast, a weekly show focused on autism and communication. She is a sought-after speaker, connecting with audiences locally, statewide, and nationally. Rose is passionate about ABA SPEECH's mission to empower all students to become independent communicators.
CONNECT WITH ROSEMARIE GRIFFIN
Website: http://www.abaspeech.org
Instagram: https://www.instagram.com/abaspeechbyrose/
Host Annette Hines of Parenting Impossible welcomes Lisa Candera, The Autism Mom Coach in a discussion about the burnout cycle and how she helps coach parents to get out of this cycle to live healthier. She calls her one-on-one coaching program, "Be the Solid Object," which she explains is "specifically designed for Type A mothers raising children with ASD." Candera works in one-hour Zoom coaching sessions during which she helps her clients engage in self-examination and radical acts of self-love. She also works as an attorney.
Hines and Candera discuss the differences between the roles of "therapy" and "coaching." Unlike therapy in which decisions are based as a clinician, past experiences and beliefs are explored, and diagnoses are made for individuals, coaching is a focus on the present to identify what thoughts are causing issues in our feelings and actions so that an interrupt or pause can happen before negative emotions and actions occur. While coaching can work well with therapy, Candera explains that coaching focuses on questions like:
Where are you right now?
What are your pain points?
Where do you want to be?
How can we get you there?
Candera uses a self-coaching method based on the think-feel-act cycle: How we're thinking impacts how we're feeling which drives our actions. Candera's blog post, The ABCs of Living in Survival Mode (link: https://theautismmomcoach.com/the-abcs-of-living-in-survival-mode/), which Hines asks about in the episode, really helps to outline how our thoughts are often externally created based on societal norms or expectations about women or family or lifestyle that are unrealistic.
For special needs parents, the three points Candera highlights for surviving during difficult times:
1) Allow it to be messy,
2) Basics only,
3) Commit to your essentials, are countercultural to the American societal messaging that many parents receive or Type A personalities believe in that they have to be successful super-achievers in every aspect of life, all the time.
Candera's goal is to help parents, especially those parenting special needs children, learn to interrupt the burnout cycle through awareness, acceptance, mind-management, nervous system regulation, and self-compassion.
Connect with Lisa Candera:
Website: theautismmomcoach.com
Get on her mailing list: https://mailchi.mp/theautismmomcoach/7-truths-every-asd-mom
Instagram: @theautismmomcoach and Facebook: @theautismmomcoach
In this episode, Host Annette Hines speaks with Author Meg Zucker. They discuss empowering children with differences and disabilities. By embracing inclusivity, we not only create a brighter future for these children but also foster a society that is compassionate, understanding, and truly representative of the diversity of humanity.
More about Meg Zucker: She’s an accomplished attorney and prominent figure in the field of anti-money laundering and financial crimes on Wall Street, holds degrees from the University of Wisconsin-Madison and NYU School of Law. Alongside her legal career, she is the visionary behind Don't Hide It Flaunt It® (DHIFI), a nonprofit organization committed to promoting acceptance and empathy for diverse individuals. DHIFI focuses on delivering "flaunt it" Social Emotional Learning (SEL) and anti-bullying initiatives to a wide range of educational institutions, community service organizations, and Fortune 500 companies' diversity, equity, and inclusion programs. Meg Zucker serves as the founder and president of this transformative organization.
Meg Zucker’s Book: Born Extraordinary: Empowering Children with Differences & Disabilities
https://www.libraryjournal.com/review/born-extraordinary-empowering-children-with-differences-and-disabilities-1794975
CONNECT WITH MEG ZUCKER
Website: https://megzucker.com/
Facebook: https://www.facebook.com/profile.php?id=100088447746507
Twitter: https://twitter.com/MegZucker
Instagram: https://www.instagram.com/megzucker/
LinkedIn: https://www.linkedin.com/in/meg-zucker-971b2467/
Join host Annette Hines in this episode as she addresses two common questions that have been on the minds of her listeners. The first question focuses on the milestones in a special needs child's life, while the second question explores the steps parents can take to prepare for summer programs catering to their child's unique needs.
Annette emphasizes that the timeline for milestones varies for each child and family, and it's essential not to compare your child's progress to others. Instead, she encourages celebrating individual achievements and providing support wherever necessary.
Legal matters and benefits resources related to healthcare, insurance, estate planning, and more can be overwhelming for any family. However, these complexities are even more pronounced for families with special needs children.
Request a copy of the Special Needs Company eBook with a wealth of information pertaining to state and federal programs, laws, and assistance based on the many ages and stages of special needs children: https://specialneedscompanies.com/download-our-free-ebook/
It is our hope that this resource helps you through the unique, complex legal processes that only special needs families will encounter.
We're re-releasing a previous podcast episode from June 2021 that features an interview with Él Martinez and their mother, Ivylee Martinez, regarding gender identity issues in celebratration of LGBTQ+ Pride month in June. Pride Month is a time to recognize the issues, challenges, and discrimination the LGBTQ+ community has faced and to celebrate the triumphs. Host Annette Hines and Él discuss the use of pronouns, labels, and terminology in both the LGBTQ+ community and in the disability community. Honoring each individual and their preferences in how they refer to themselves is essential. For example, people may have strong feelings about the use of terms like "special needs" or "disabled" and instead choose to use terms like "different" or "extrodinary."
Él explains how the use of pronouns (He/She/They) can be difficult and challenging for friends, family, teachers, and acquaintances to use correctly. Below are the definitions for various gender terms for those unfamiliar that they shares during the episode:
(Biological) Sex – assigned to a child at birth, most often based on external anatomy.
Gender Identity – the term(s) someone uses to define their gender, ex: male, non-binary, woman, fluid.
Gender Expression – the manifestation of someone’s gender through their appearance.
Transgender – a term used to describe someone who does not identify with the label/biological sex they were assigned at birth.
Cisgender – a term used to describe someone who identifies with the label they were assigned at birth.
Él shares the message of acceptance at the end of the podcast. For youth: “You’re perfect just the way you are; it’s ok to explore; it’s ok to change how you identify.” To parents, Él says to have patience. Kids may not have the answers to the questions you are asking. Kids are still learning about themselves and to just listen to them and their needs and accept them as they are.
If you or someone you know needs assistance, please check out your local GSA (Genders and Sexualities Alliance) and/or local LGBTQ+ center or group. Other resources include GLSEN, which supports LGBTQ+ students in K-12 education, and Transgender Law Center.
Learn more about the advocacy work of Él Martinez on their website: https://www.elmartinez.org/
Let us know what you think of this episode! We are re-releasing it because it is so important to learn about gender identity and be open and accepting of all people as they are. Leave a comment on our website: https://specialneedscompanies.com/podcasts/
In this episode, Host Annette Hines honors the legacies of Boston Marathon competitor Rick Hoyt and her daughter, Elizabeth, through a tribute to author and previous Parenting Impossible guest, Jess Ronne, and her use of the word "grit" to mean a will to persevere amidst the challenges of living as a special needs family.
Rick Hoyt and his father, Dick Hoyt, showed continual grit as Team Hoyt as they entered as dual Boston Marathon participants for the first time in 2012 with Dick pushing Rick in his wheelchair during the course. The marathon administration had to develop a new classification for their participation because no one before them had ever entered to run as a team. Rick Hoyt's cerebral palsy left him as a quadriplegic, and he recently passed away on May 22 due to complications in his respiratory system. Team Hoyt persevered with grit to complete the Boston Marathon course 32 times as well as over 1,000 other races, and their courage, determination, and indomitable spirit stand as a model to others that Yes You Can set goals, challenge yourself, and accomplish the difficult.
Hines also recounts the grit of her daughter, Elizabeth, who passed away 10 years ago on May 31, 2013. That same year in April, the Boston Marathon Bombing occurred right at the same time as Elizabeth's entrance into hospice and gradual ultimate decline. Hines reminds listeners that despite the hardships and difficult moments that families and individuals with disabilities encounter, it's essential to cherish life and live in the present with grit.
Let us know what you think of this episode! Leave a comment on our website: specialneedscompanies.com/podcasts
In this episode, Host Annette Hines welcomes guest Anna Maki, Director of Benefits Navigation at the Bobby Dodd Institute (BDI) in Atlanta, GA. She is a clinical counselor and benefits expert with a wealth of knowledge and experience in helping individuals and families with disabilities navigate the complex world of benefits. With a strong educational background and a track record of success, Anna developed the Benefits Navigation program and has positively impacted the lives of over 1,200 families. The BDI has a 70% success rate on initial Social Security Administration applications; 60% success rate at reconsideration, and 90+% success rate at hearings. Join Annette as she and Anna delve into the importance of benefits acquisition and learn about Anna's work with the Social Security Administration's work incentive planning and assistance program. Check out the BDI's Facebook page where you'll find Anna featured in reels answering questions about disability benefits.
CONNECT WITH ANNA MAKI
Website: www.bobbydodd.org Facebook: facebook.com/BobbyDoddInstitute
In this episode, I had a great conversation with Anthony Delauney. Anthony is a financial advisor, franchise business owner, and author of several financial education books, including three in the Owning the Dash series. His books include Applying the Mindset of a Fitness Master to the Art of Family Financial Planning (2019), The No-Regrets Retirement Roadmap (2021), and Dash and Nikki and the Jellybean Game (2021), with more titles forthcoming.
Moreover is a financial advisor with over 18 years of experience, holding several professional certifications in financial planning. He helps families manage all aspects of their financial lives, including debt elimination, retirement planning, and investment education. Along with his wife and two children, Anthony is passionate about supporting growing families and children's hospitals through charitable giving.
CONNECT WITH ANTHONY DELAUNEY
Website: https://www.owningthedash.com
Facebook: https://www.facebook.com/OwningtheDash/
Twitter: https://twitter.com/owningthedash
Instagram: https://www.instagram.com/anthony.delauney/
LinkedIn: https://www.linkedin.com/in/anthony-delauney-cfp%C2%AE-chfc%C2%AE-crpc%C2%AE-ricp%C2%AE-bfa%C2%AE-b23477176
In this episode, I had a great conversation with Josh Fields — CEO and Co-founder of The Next Step Programs. TNS is a nonprofit organization breaking down barriers for people with disabilities as they transition out of high school into a world of employment. Josh is an experienced leader with a demonstrated history of working in the nonprofit and disability industry. He is a strong community and social services professional with a Bachelor's degree focused in Labor Studies and Employment Relations from Penn State University. In this episode, we talk about how people with disabilities can bring unique perspectives, skills, and experiences to the workplace. They often have to navigate the world in different ways, which can lead to creative problem-solving and innovative thinking.
CONNECT WITH JOSH FIELDS
Website: https://tnsprograms.org/
Facebook: https://www.facebook.com/TheNextStepPrograms/
Instagram: https://www.instagram.com/tnsprograms/
LinkedIn: https://www.linkedin.com/company/the-next-step-programs-inc./
Host Annette Hines starts the podcast honoring Holy Week and the celebration of Easter and Christ's resurrection. During the interview, she speaks with Wellness and Small Business Coach Sudi Barre who shares her experience of being diagnosed with Spontaneous Coronary Artery Dissection (SCAD) and suffering a massive heart attack and open heart surgery immediately after delivering her child. Through managing her chronic illness, Sudi has become an expert in barriers to access to health care for minorities, a woman with lived experience, an advocate for sex and gender equity in care, a speaker, and a blogger. Being a parent can be challenging at the best of times, but when you add the complexity of managing a chronic illness, it can feel overwhelming. This episode will teach you how to navigate challenging situations with courage and resilience.
Connect with Sudi Barre online: https://wellnessreign.com
Facebook: https://www.facebook.com/profile.php?id=100069412592233
Instagram: https://www.instagram.com/wellnessreign8/ LinkedIn: https://www.linkedin.com/in/sudi-barre/
YouTube: https://www.youtube.com/@wellnessreign6360
In this episode, Host Annette Hines welcomes back Author Jess Ronne to the show to discuss her newest book, Lovin’ with Grit and Grace that was just released in February. Jessica Ronne is an author, speaker, podcast host of Coffee with Caregivers, associate producer of the “UNSEEN” documentary, and caregiver advocate. She is founder and executive director of The Lucas Project, a non-profit dedicated to serving parent caregivers with recognition, respite, and resources. Jess and her husband Ryan live in Michigan with their eight children, including their son Lucas who has profound disabilities. Her story of beauty from ashes is detailed in her memoir, Sunlight Burning at Midnight.
Lovin’ with Grit and Grace: https://www.amazon.com/Lovin-Grit-Grace-Straight-Talk-Romance/dp/1684260922
You can listen to the previous episode with Jess on our website:
https://specialneedscompanies.com/episode-126-caregivers-need-our-support-with-jess-ronne
Connect with Jess Ronne:
Website: www.thelucasproject.org
Facebook: Facebook/theofficiallucasproject
LinkedIn:https://www.linkedin.com/in/jessica-ronne-4b412670/
It is tax time and we want to revisit a popular episode!
Learn from Host Annette Hines and her favorite guest, law partner, and husband, Mark Worthington about answers to four top questions people ask about tax preparation and tax reporting:
- Can I claim my adult child as a dependent?
- If I charge my adult child room and board when they are living with me, is that taxable income to me? And how does this impact their Supplemental Security Income (SSI)?
- Taxation of special needs trusts and SECURE (Setting Every Community Up for Retirement Enhancement) Act of 2019 updates.
- How are caregiver payments such as Adult Family Care (AFC) and Personal Care Attendant (PCA) taxed to the recipient?
In relation to #3 on taxation of special needs trusts and the SECURE Act, Mark and Annette discuss the proposed regulations that were released in February 2022. The SECURE Act shifted how distributions could be taken from retirement accounts after the account owner dies. If you are considering including a retirement account in a special needs trust for a disabled beneficiary or if you are a trustee managing a trust that has an inherited retirement account, you must be talking with a special needs estate planner like Annette or Mark or a tax advisor. If you or are working with an individual who lives in Massachusetts and need guidance on special needs trusts, you can contact their firm, Special Needs Law Group of Massachusetts, PA on their website: https://specialneeds-law.com/contact/
Since the recording of this episode, Congress signed into law SECURE 2.0 Act in late 2022, and updated how people save money for retirement and withdraw funds from retirement accounts. SECURE 2.0 completely revised the rules for the age at which retirees must take required minimum distributions (RMDs) from their retirement plans. If your trust has an inherited retirement account or if you are the beneficiary of one directly, you will have to pay attention to the new required minimum distribution (RMD) rules.
Finally, an important point that Annette and Mark make is that distribution decisions for a special needs trust to a beneficiary cannot be made based on taxes. Rather these decisions should be made best on what is in the best interest of the beneficiary, how much needs to be saved, the size of the trust, form of the distribution.
What types of tax questions do you have? What can Annette or Mark answer for you in future episodes? Leave us a comment or question here: https://specialneedscompanies.com/podcasts
In this episode as we celebrate womens month, I talked with Danielle Sullivan - the founder of Neurodiverging Coaching, an online, sliding scale coaching practice supporting a worldwide, diverse clientele with issues related to neurodiversity, ADHD, autism, and executive functioning for adults and families. In this episode, Danielle shared parenting techniques especially for neurodivergent families.
Her organization mission is to help neurodivergent folks find the resources we need to live better lives as individuals, and to further disability awareness and social justice efforts to improve all of our lives as part of the larger world community. They support strength-based, evidence-based assessment and skill-building, social and disability justice paradigms, and a commitment to taking care of one another.
Connect with Danielle Sullivan
Website: https://neurodiverging.com
LinkedIn: https://www.linkedin.com/in/danielleatneurodiverging
Facebook: facebook.com/neurodiverging
This episode is commemorating International Rare Disease Day which is dated every last day of February. This day is dedicated to raising awareness for the approximately 300 million people around the world living with a rare disease. Annette Hines recognizes in memory of her daughter, Elizabeth who died in 2013 because of mitochondrial disease - a rare or orphan disease.
Moreover, every February is a month that Hines reminds caregivers and families of disabled loved ones to care for themselves. An important part of self-care is thinking positively. She shares the metaphor of the coffee bean and its ability to create something amazing from adversity from Damon West's book, The Coffee Bean, which teaches readers how to transform their environment, overcome challenges, and create positive change: https://coffeebeanbook.com/
Let us know what you think of this episode! Please leave a review or a comment on our website: https://specialneedscompanies.com/podcasts
In this episode, Laura and I talked so much about life of a mom and systems in the house, like reducing workload and running the home smoothly. Laura is a mother of ten and the owner of Mama System. In just five years, they had 6 six children - three biological and three through adoption. Incredibly Laura manages 20+ appointments a week for her four special needs children. Thus she is very passionate and dedicated to helping women bring more peace to their homes. Her specialty is designing customized systems that help a family run more smoothly and reduce daily work.
Request your free Mama Systems Self-Care Guide as a Parenting Impossible Listener here:
https://www.mamasystems.net/parentingimpossible
Connect with Laura Hernandez Website: www.mamasystems.net Facebook: www.facebook.com/mamasystems.net Instagram: www.instagram.com/mamasystems www.instagram.com/fasdmama
In this episode, I spoke with Lois Letchford. Lois is an educator, writer, and public speaker. When Lois Letchford was 39 years old, she faced teaching her son Nicholas, she discovered she had dyslexia. She modified and changed classes as a result of reflecting on her reading failure. Lois is qualified as a reading specialist and can help other struggling students by utilizing her unconventional background, extensive international experience, and dedication.
Lois got her teaching certifications from SUNY, NY, and the states of Australia, Texas. She has acquired a special skill set and perspective from her teaching and studying, and frequently works with students who have struggled in other reading programs.
In this episode, we got to talk about the journey of Lois Letchford and how she became the person right now.
Lois Letchford
Reversed: A Memoir
Let us know what you think of this episode! Please leave a review or a comment on our website: https://specialneedscompanies.com/podcasts
In this episode, I talked to Dr. Bibi Pirayesh an educational therapist and Founder of One of One Kids. She holds a Bachelor's in Neuroscience and Education from the University of Pittsburgh and a Master's in Developmental Psychology from Columbia University, focusing on children's development and cognitive neuroscience. She has over a decade of experience as a learning specialist and educational therapist in private practice. The scholarship, research interests, and advocacy work of Dr. Bibi are focused on gaining a deeper understanding of the historical and epistemological factors that perpetuate inequalities in the system. This inspired her creation of The Difference Not Deficit Project, an initiative aimed at transforming special education by shifting the narrative one story at a time. In this episode, we got to talk about learning disabilities as a social justice issue. Listen to the whole episode to know deeper about how learning disabilities as a social justice became Dr. Bibi’s advocacy.
Dr. Bibi Pirayesh
One of One Kids
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In this episode, we are joined by an author living with autism known as Asperger’s Syndrome, Matthew Kenslow. His journey through life, learning about everyone and everything around him through both compliments and teases, has been an adventure. His goal is to demonstrate to others how autistic people perceive the world in a different way from the rest of the world. In this episode, the host - Annette Hines, and Matthew talked about how Matthew handled socialization from grade school until college. Recognizing what Mattew has and being aware of his limitations. Like during grade school, he accepted that he was not really a good reader as others. But eventually, he became an author who published the book Juggling the Issues: Living With Asperger's Syndrome. Where he shared many of the issues that those with autism and Asperger's face each day.
Matthew Kenslow’s Book
Juggling the Issues: Living With Asperger's Syndrome
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Host Annette Hines welcomes guest Eric Jorgensen of True North Disability Planning whose life mission is to change the reality of the fact that: "It is too hard for the average person to find out what they qualify for, and reach out and get those benefits in place." His roadmaps are downloadable resources for print and online use that are specific to each state to help people build momentum in gaining access to benefit programs and supports. They include links the the specific Medicaid programs in each state, timelines, and checklists for individuals with disabilities to identify and gain access to benefits and resources. Plus, they are available in English and Spanish!
You can find the roadmaps and other resources on the True North Disability Website: https://truenorthdisabilityplanning.com/idd-roadmaps
Plus, look for upcoming collaborations between Host Annette Hines and Eric Jorgensen coming soon! Leave a comment letting them know what types of resources you'd like to see for the disability community: : https://specialneedscompanies.com/podcasts/
In this episode, Host Annette Hines welcomes Erin Prosser and her daughter, Lucy's (Lulu) neurologist, Dr. Christina Bergqvist of the Children's Hospital of Philadelphia to share their story of working together to care for Lulu and treat her neuro-developmental disease, STXBP1 encephalopathy. This is a great example of how a family member and caregiver can work successfully with a medical provider.
If you're interested in the topic of rare disease, check out our older episodes like "When You're the Patient and the Parent" or "Dig Deep: Finding Hope in Special Needs Parenting with Kelly Speck."
To learn more about STXBP1 and the Prosser family, check out their site here.
In this episode, Host Annette Hines shares more about her goals for 2023. This year she is taking a sabbatical, not from work, but from all her external commitments. She notes that the term "sabbatical" means taking a break, which most often is associated with a leave from work. However, as Special Needs Companies, which includes her law and trustee practices, requires her to continue working, she is taking a sabbatical from any outside commitments of her time, talents, and treasures. Guiding listeners through her personal exploration of her motivations to always say 'yes,' Hines describes fear, social engagements, and identity as factors that influence her need to be constantly involved and over-committed, which will sound very familiar to listeners.
By the end of 2023, Hines hopes to be able to identify the things that truly bring her joy. Once she's able to identify those areas where she is particularly passionate, she will have a much clearer sense of which external commitments to add back into her life in a mindful way. Her hope for listeners is that you write down your own goals for 2023 and let her know what they are! Leave a comment on our page: https://specialneedscompanies.com/podcasts
What do you want to accomplish this year? Where do you want to be a year from now? For many of us, as soon as we say: "Happy New Year!" we feel the pressure to set resolutions for this year related to our health, personal or professional life. But simply saying: "I want to lose weight this year," notes Host Annette Hines, sets us up for failure because we have not created a specific, attainable objectives to make this desire a reality. In this episode, Hines guides listeners through the process of setting and achieving SMART goals. The acronym SMART stands for: specific, measurable, achievable, realistic, timely. If your goal has all five of these elements, then your ability to achieve the goal dramatically increases. Listeners will be able to relate to Hines' personal journey of learning how to find the goals that really resonate personally when struggling with the day-to-day life routines that can make visioning for the future challenging. She shares strategies to ensure that you will be able to predict progress, prioritize efforts, and attain what is realistic for you. So, what are you waiting for? Grab a notebook as you listen to write some notes about the types of specific, measurable, achievable, realistic, and timely goals you will achieve in 2023.
One of Hines' goals that she has been making a reality is her Special Needs Academy, which is a combination of online courses and coaching programs. Her signature program, Special Needs Advocacy and Planning (SNAP) offers a group coaching program that starts on January 18! Check it out online: enroll.specialneedsfamilyservices.com
Our annual podcast episode on Preparing for Your Best Year Yet features the planning duo of Special Needs Law Group of Massachusetts, P.C.: Host Annette Hines and her husband and law partner, Mark Worthington.
Do you have an estate plan or do you still need to create one? How long has it been since you've reviewed it? Annette and Mark provide an essential guide in this episode for reviewing your estate plan to prepare for your best year. They invite listeners to consider three things:
- What's changed about your assets or your stuff? What's your financial picture look like?
- How are you and the people named in your plan doing?
- Have there been changes in the law?
Because Annette is an attorney, planning is an essential part of her job, which often is a focus of her episodes. In an earlier episode from this year, Special Needs Awareness Month: Estate Planning, she explains what an estate plan is and why it is so essential for special needs families. Special needs estate planning is for anyone wanting to ensure that their disabled person will be safe and provided for no matter what happens in the future.
Let us know what you think of this episode! Please leave a review or a comment on our website: https://specialneedscompanies.com/podcasts
Ever wondered how to give back to a charity or organization that has truly made a meaningful impact on your family? Host Annette Hines shines a spotlight on one of her beloved organizations, Perkins School for the Blind, where her daughter, Elizabeth attended school, to show how easy it is to make planned gifts. Charitable giving is one of the most frequent discussions Annette has with her clients in planning their estate. Planned giving is accessible to almost everyone, and it is a meaningful way to make an impact at your favorite organization. Two guests join Hines for this discussion on charitable giving. Jennifer Volpe works with donors on planned giving to Perkins, and she shares the perspective of what planned giving looks like from the organization. Brooke Carter Sukhavasi serves at Colby College as the Senior Associate Director of Gift Planning and is working with Perkins on planned giving through her consulting organization, B&P Consulting LLC, also joins the discussion. Annette encourages you to review your year, learn about what went well and didn't go well, and celebrate wins and move forward with a plan for 2023.
Let us know what you think of this episode and what questions you have about planned giving on our website: specialneedscompanies.com/podcast Also, we would love it if you would leave us a review. It really helps us increase our podcast's visiblity and ability to share great content for the disability community.
Host Annette Hines and her guest, David Goldfarb who is the Director of Policy at the Arc of the United States discuss policy and advocacy issues related to housing and institutional bias in the disability community. Despite the landmark Olmstead decision of the U.S. Supreme Court in 1999 that found that people with disabilities were being segregated into institutional facilities and should be supported in community living situations, these services are not mandatory under Medicaid. Therefore, most people with disabilities are only able to secure funding for housing in institutions. Hines shares startling statistics from a report released by the National Council on Disability that 14 million Americans need community-based services, and nearly 40% of those people are under age 65. As a result of this, people under the age of 30 account for the fastest growing group of nursing home residents. She refers to lack of financial investment for home and community-based services "institutional bias," which prevents people from living their best lives and neglects their choices and freedoms in their home life. Without the financial support that enables access to affordable housing, quality direct support workers, and community support programs, people with disabilities are forced to choose between living at home or living in an institutional setting. Let your representatives know that community-based services should be mandatory under Medicaid. Learn more on The Arc of the U.S.'s website: https://thearc.org/
What policy issues would you like to hear about in our podcast? What are your thoughts about afforable, safe, and supportive housing for people with disabilities? Leave us a comment on our website: https://specialneedscompanies.com/podcasts
The third in a series featuring unique and innovative solutions for the disability community, this episode features the Co-Founder & Managing Partner of Sponsors of the Future (SoF), Suzy Im. The goals of SoF are to design easier ways for parents and caregivers to access information and advocate for their loved ones, as well as connect neurodivergent kids with global organizations to empower them and ensure that we consider a person's whole being. Host Annette Hines notes that SoF's concept of connectivity, an ecosystem that supports the neurodivergent community through education, advocacy, and inclusion, is like grassroots organizing by networking and navigating complexities together. They also discussed finding hidden gems of local support and necessary corporate responsibility of organizations in industries like healthcare and pharmaceuticals to create solutions in partnership with the people they serve. You can learn more about or donate to SoF's mission on their website: www.sponsorsofthefuture.org/mission
We need your feedback and reviews to continue to produce and promote the innovations of agencies like Sponsors of the Future! Please rate and review this episode as well as share it in your community. Or leave a comment on our website: specialneedscompanies.com/podcasts
Working at the intersection of artificial intelligence, ed tech, and dyslexia, Guest Hugo Richard of Dystech in Australia is driven to solve complex problems in our society. His goal is to create more awareness about how computer intelligence and artificial intelligence could enable the creation of reliable tools that will positively impact children worldwide and drastically improve and change how we do education. Learn with Host Annette Hines about how Richard and his team at Dystech are developing technology to empower educators to easily screen for dyslexia and assess reading performance. These innovations dramatically cut the time and cost for conducting reliable assessments for learning disabilities, which holds so much promise for our disabled student community. Learn more about their developments on the Dystech website: https://dystech.com.au
We would love to hear what you think of this episode. Leave a comment on our website: https://specialneedscompanies.com/podcasts/
Host Annette Hines opens the podcast reflecting on the many ways that technology can improve the livelihood of people with disabilities through the creation of assistive tools. Her guest, Ange Anderson M.Ed discusses the benefits of technological interventions to support students with learning differences that she has employed in the UK. She asked the question, how can we use the technology neurodivergent students enjoy and are comfortable with to gain control and make life easier for teachers, staff, and students? Computer programs are logical, predictable, and can provide a reliable outcome, unlike real life situations. VR (virtual reality) activates the motor cortex in our sensory system in a way that is similar to real life situations and gives students the feeling of being in a virtual environment. During her work as an educator, she has found that VR helps students practice scenarios that appear like real life situations so that they can prepare to better encounter the actual situation in life. The VR room at her school provides the ability for students to develop a familiarity with a new situation such as a dentist office or store in the safety of the school so that they can be successful once encountering these spaces in the real world.
We would love to hear what you think about this episode. Please leave a comment! specialneedscompanies.com/podcasts
Guest Jennifer Fraser, PhD founder of The Bullied Brain shares what she has learned about the relient nature of humanity as well as damaging impact of abuse and bulleying on the brain. She sees brain science as the key to helping people heal from abuse. When we are subjected to a repeated cycle of abuse or bulleying, our minds and bodies start to feel anxious about a threat from a preditor, which activates the sympathetic nervous system without our decision-making process. We are unaware of the automated response of our bodies and brains to threats, and unless we develop strategies to manage this stress, we suffer dramatic impacts on our health. However, if we keep our brains healthy and safe, our brains can be powerful and effective.
Let us know what you think of this episode! Leave a review or a comment on our website.
Host Annette Hines opens the episode with an overview of the "Health and Hospital Corporation v. Talevski" U.S. Supreme Court Case and the impact the case may have on the ability of people who depend on public benefit initiatives funded by state and federal agencies be able to sue states when their civil rights are violated. She also notes the recent gains the disability community is making in combating institutional bias in health care and housing.
Preparing for the holiday season is the primary focus for the episode. Hines provides tips to emotionally manage this stressful and perhaps sorrowful time that her family uses to keep the memory alive of her daughter Elizabeth who passed away in 2013. In her classically transparent and warm fashion, Hines shares her anxiety of anticipating the holiday season and the trigger questions people might ask her. Her honesty about these feelings that many of you may experience help normalize the struggle we may feel to either withdraw or blow up at people. Plus, one of these tips might make the holidays more manageable for you!
Please rate and review the podcast on Apple, Spotify, or whereever you listen! We love to hear your comments about the content; post one on our site here: specialneedscompanies.com/podcasts
Even though mindfulness is familiar, and we know we should practice it, we struggle to do it and need reminders to stop and care for ourselves. Podcast guest, Shonda Moralis, who is a life balance coach and therapreneur, explains how mindfulness and finding a state of calm is when we perform at our best. She developed a method and wrote a book with the same name, Don't Forget to Breathe, that focuses on simple practices that can be applied in minutes and provide huge benefits to our mental and emotional health. Mindful breaks are reminders to stop in our busy day that pull us out of our rush and autopilot nature, and pay attention to our body and the present moment. You can read more about mindful breaks on Shonda's website: www.shondamoralis.net
Please let us know if you're enjoying these episodes and whether there is a topic you'd like to hear! Leave a comment on our website: https://specialneedscompanies.com/podcasts
Host Annette Hines wraps up her series on legal planning and supporting the decision-making of your loved one with disabilities during Special Needs Awareness Month with a deep dive into special needs trusts. Have you ever wondered:
- How does someone manage a special needs trust?
- How do you choose a trustee or appoint one in your planning documents?
- Who can serve as a trustee?
- What kinds of distributions can you make from a special needs trust?
- How do I work with a beneficiary who's disabled?
Sharing from her extensive knowledge as a special needs attorney, Annette Hines gives an accessible overview of trusts and how they can be used to support your disabled person and operate in the real world.
All of the videos for this series will be posted in our Special Needs Academy for purchase as well in our private Facebook group Circle of Care.
We would love to know what you think of this episode! Leave a comment on our website: https://specialneedscompanies.com
Voice and Choice is a term host Annette Hines developed to refocus the decision-making process on the disabled person to ensure that their voice is heard and their choices are honored. She explores how to support legal decision-making for your disabled person; recent developments related to guardianship; the Britney Spears conservatorship case; what we have learned from the Covid pandemic; and fundamentals of the options related to legal decision-making. A depravation of civil liberties is at the core of the Britney Spears case, the early response during the Covid pandemic for disabled people in group homes, and is the reason why it's so necessary to examine whether there are other options for supporting decision-making aside from a guardianship or conservatorship.
We'd love to hear what you think of this episode! Join our Circle of Care Facebook group to become part of a support network and discuss these issues within the disability community.
October is Special Needs Awareness Month! Attend one or all four short, complimentary trainings via Zoom each Wednesday in October at 5:30 pm EST with a live Q&A session with Host Annette Hines. A single registration is required to attend four sessions as each will use the same meeting link. Register for the webinars here: https://bit.ly/SNPlanningWebinars
The first episode in this series is about Special Needs Planning. Many people ask: So is estate planning really just about taxes and creating a will? Actually, estate planning is a roadmap to get to a set of goals that you have established and documents help us get there as part of the plan.
Everything starts with a will, but it is the least important document you're going to sign. For those with someone with a disability in their life, trusts are going to play a part. What happens when you're no longer able to make decisions or have a say? It's essential that you use proper planning to legalize and affirm your wishes and goals. Learn more on our website: https://specialneeds-law.com/
Did you know that how you were raised and what you witnessed about money impact how you spend and save?
Guest Michelle Francis is the owner of Life Story Financial in Denver whose slogan is: "Money is the heart of our life story," as well as a mom to three, two who have Phenylketonuria (PKU), a rare metabolic disease diagnosed at birth. She's found in her work as a financial planner that our life story and upbringing affect how we use money. The second in a series about financial planning and sharing our money stories, Developing Family Money Smarts relates to the How to Talk about Money episode with Kathleen Burns Kingsbury. Francis and host Annette Hines discuss the importance of sharing our stories and money history to identify what motivates us so we can accomplish financial goals and spend mindfully. They also touch on impacts on families with complex medical needs of U.S. formula shortage earlier in 2022. Learn more on our website: https://specialneedscompanies.com/developing-family-money-smarts/ as well as on the Life Story Financial website: http://www.lifestoryfp.com/
Have an idea for a podcast episode or a guest you'd like to hear? Share it with us: https://specialneedscompanies.com/podcasts/
When your family is faced with natural disasters or emergency situations, how do you cope? For families with children with disabilities or complex medical needs, what types of plans do you have in place to protect their access to medicines, devices or equipment, food and more? Host Annette Hines and her guest, Patricia Frost who is vice-chair of the National Pediatric Disaster Coalition (PDC) with over 35 years of experience as a pediatric/neonatal critical care nurse, discuss resources the PDC has created to empower families to develop emergency plans for home and school so that the care of children and those who are most vulnerable is maintained. Be prepared as a family at home and school with an emergency plan by using checklists and developing a community of supporters who are ready ahead of the disaster. Consider creating an Individualized Health Plan (IHP) for your student at their school that may or may not be part of the IEP. Resources for developing an emergency plan are available on the NPD's website: https://www.npdcoalition.org/
Learn more from a previous guest, Alex Ghenis, the deputy director of Sustain Our Abilities, who educates the public on climate change and disaster preparedness in our local communities.
Let us know what you think of this episode! Leave a comment on our website: https://specialneedscompanies.com/podcasts/
Sensitive Topic Warning: Host Annette Hines discusses child abuse and child sexual abuse in this episode. She introduces the episode by reflecting on the report of the abuse of a young man with disabilities in a group home in southern Illinois published on ProPublica.org, noting that the incidence of abuse is much higher for youth with disabilities.
Her two guests, Dr. Amy Saltzman, founder and director of Spot a Spider, a program to prevent abuse, and 30th Circuit Court Judge Honorable Rosemarie Aquilina who oversaw the trial of U.S. gymnastics doctor and convicted abuser, Larry Nassar bring to light the behaviors of abusers and the importance of providing kids and community members the language to report abuse. Abuse is when someone you trust uses their power to hurt you. Preventing abuse starts with empowering ourselves to speak out when something is wrong, and believing and affirming our kids or others when they tell us.
We would love to hear what you think about this episode. Please leave a comment! https://specialneedscompanies.com/podcasts/
What do you do when your five-month-old child has seizures that are only happening at night?
For writer Marc Palmieri, it was hard to know whether the strained movements and odd facial expressions were a problem for his young daughter Anna, when she had been a healthy, happy baby otherwise. Ultimately, Anna was diagnosed with complex partial seizures, frontal lobe Epilepsy and was able to live a fairly normal life despite having severe epilepsy until age 11. Join host Annette Hines in hearing the adrenaline rush of a nerve-racking, mystery pursuit for Palmieri's family to save Anna when epilepsy completely took control of her body resulting in a serious brain surgery. Palmieri shares how much he learned from Anna about pursuing dreams and overcoming the impossible.
You can read about Anna's fight to live on Palmieri's website: www.marcpalmieri.com and his newly released book, SHE DANCED WITH LIGHTNING, My Daughter’s Struggle with Epilepsy and Her Boundless Will To Live
We would love to hear what you think about this episode. Please leave a review or post a comment on our website: specialneedscompanies.com/podcasts
Host Annette Hines opens the episode sharing about the month of September and the celebrations of Special Needs Companies, which includes the 10 years of service of Special Needs Law Group of Massachusetts and 3 years of hosting Parenting Impossible Podcast! Plus, this month is the start of the online Transition Planning Masterclass & Coaching Programs: Learn more here: https://bit.ly/TransitionPlanFreeCall
At the root of the philosophy and our recent episode with Parenting Coach Allana Robinson of Uncommon Sense Parenting and the Facebook group: Parenting Posse is this concept: Your child can't behave well unless they're calm … and what this means for your parenting.
With actionable recommendations, Robinson explains how to gain back control by calming ourselves first as parents and collaborating (not compromising) with our kids. Based on her research with parents in many different countries and situations, Robinson shares that most parents are spending upwards of 6 HOURS a day dealing with behavior struggles with their children.
Gain some accessible tips from the discussion and online through Robinson's website: https://www.allanarobinson.com/
We would love to hear what you think about this episode. Please leave a review or post a comment on our website: https://specialneedscompanies.com/podcasts
What is PDA? New to the United States, Pathological Demand Avoidance (PDA) Syndrome is a small, distinct profile of autism characterized by avoiding demands and expectations due to an anxiety-based need for control. Our guest, Diane Gould, is the founder of PDA North America and the first American professional with a certification in Pathological Demand Avoidance Syndrome. She notes that those with PDA often experience panic attacks that appear to the outside world like meltdowns or a behavior problem due to being easily triggered by stimuli. Unfortunately, many professionals respond to emotional events with traditional interventions like talking or crowding the person that escalate or worsen the behavior. Gould notes that "the journey to understanding your child shouldn't be made harder by professionals." Learn more about PDA in Gould's guest article: specialneeds-law.com/pda-autism-profile and on the PDA North America site: www.pdanorthamerica.com
We would love to hear what you think about this episode. Please leave a comment! specialneedscompanies.com/podcasts
In a time when employers are scrambling to fill empty job posts, imagine having a tool that would enable the ease of hiring neurodiverse individuals with a 90% retention rate to fill those positions. Our episode guest, Director of avail Support Lisa Marie Clinton explains how the avail® solution provides the one-on-one job support through digitalized tools to provide tailored training and ongoing support. Avail stands for assisted visuals achieving independent living, which acts as a type of job coach for the individual. The technology serves companies in various industries including residential living and schools to maximize services for residents and students. The platform uses Applied Behavioral Analysis (ABA) tools to provide tailored training and ongoing support without the need for another person to provide these supports. If technology can replace a person in the workforce, then it empowers disabled individuals to acquire greater independence and freedom in the community. Furthermore, workplaces that employ neurodiverse employees enjoy numerous benefits like improved workplace culture, employee retention and development rates, financial benefits and more.
Learn more about avail® and a neurodiverse workplace online: https://centralreach.com/solutions/neurodiversity-hiring/
Feeling anxious about money or wanting to avoid talking about it are normal. However, Wealth Psychology Expert and Host of the award-winning, Breaking Money Silence® Podcast Kathleen Burns Kingsbury explains that when we're not talking about money, we're more likely to make financial mistakes and have difficulty learning from them. Plus, in order to have goals and plan for ourselves as well as let go of money shame, we need to talk about money and our financial values. Start with yourself, Kingsbury recommends, and ask: What's important to me? What values do I want to honor? How do I take care of the person in my life with a disability? Once you start to uncover your emotions related to money, the easier it is to talk with your partner about money and plan together.
You can learn more about Kathleen Burns Kingsbury and her recommendations to break money silence on her website: www.breakingmoneysilence.com
@RareDiseaseDad and DadVocate are the monikers for Adam Johnson who is now a rare disease patient advocate who hosts a podcast called Parents As Rare that features stories of others like him who are affected by rare or chronic diseases. Host Annette Hines and Johnson discuss a range of topics relating to the struggle that he faced in 2019 when his symptoms related to mitochondrial disease started emerging in the prime of his education career and family life as a husband and dad. Although advocacy or rare disease were not in the realm of possibility for him previously, today Johnson's advocacy and voice related to how parents with rare diseases manage their diagnosis, lives, and grief unite others in the disability world. You can listen to the Parents As Rare podcast and read more about Adam Johnson on his website: rarediseasedad.com or on Twitter and Instagram by his handle: @RareDiseaseDad
We would love to hear what you think about this episode. Please leave a review or post a comment on our website: https://specialneedscompanies.com/podcasts
While setting out to write a book about how to age to perfection and thrive to age 100, Award-Winning Author and Podcast Guest Judy Gaman met Lucille, an amazing woman who would transform Judy's life and perspective on aging. Lucille introduced Judy to the beautiful, wonderful, tender side of old, became a dear friend, and provided Judy the hope that maybe she could have that much fun when she's 100-years-old. Judy also gained the value of relating to and appreciating the people around her and handling problems with grace. Listen as Host Annette Hines and Judy Gaman discuss the book Gaman created through her friendship with her best friend: Love, Life, and Lucille: Lessons Learned from a Centenarian.
We would love to hear what you think about this episode. Please leave a comment!
“Adversity is not an excuse - it is a reason...to thrive and to push ourselves to excel,” writes Mindy Henderson, podcast guest, author, motivational speaker, and advocate as well as the editor in chief of QUEST magazine of the national Muscular Dystrophy Association (MDA). Despite the adversity Henderson encountered in the workplace and while job searching due to others' assumptions about her being a wheelchair user, she motivated herself to self-advocate and open possibilities. We encourage you to read her newly released book, THE TRUTH ABOUT THINGS THAT SUCK, to turn your biggest challenge into your advantage. Learn more on her website: https://mindyhendersonco.com/
We would love to hear what you think about this episode. Please leave a comment on our website: https://specialneedscompanies.com/podcasts
How might climate change affect your world? What is a disaster readiness plan? Host Annette Hines discusses these timely topics with her guest, Alex Ghenis who is the deputy director of Sustain Our Abilities (SOA). His advocacy work within climate change and disaster preparedness highlights the needs and voices of the disability community that comprises 20% of all people in the world. As a wheelchair user, he is aware of how essential modern power, transportation, and healthcare infrastructure are to ensuring the health and safety of people with disabilities. The SOA Day for Tomorrow on October 22 encourages people of all abilities to mobilize within neighborhoods "to create awareness of our need to transition back to a healthy, sustainable, built environment where we are ready to respond to disasters and conquer climate change." To find resources and learn more about Day for Tomorrow, visit sustainourabilities.org.
A severely traumatic or unusual birth experience, weeks spent in the NICU, and harsh lectures from a neurologist about your child's chances of survival or living a good life are common starting points of the parenting journey that unites many special needs families. Host Annette Hines notes how her guest, Kelly Speck, author of the new book, Hope in the Heartache: The Journey of Grace and Growth with a Special Needs Child, shares many commonalities with Hines' narrative raising her daughter, Elizabeth. Motivation to tackle adversity and live your best life is at the heart of Speck's story of the birth of her son, Bennett who is a quadriplegic, now 15-years-old, and the story of her family with her husband, Travis, and Bennett's brother Jackson and sister Reagan. You can learn more about Speck's story and family on her website: https://hopeintheheartache.com.
We would love to hear what you think about this episode. Please leave a comment on our website: https://specialneedscompanies.com/podcasts
How does your child's diagnosis affect your family? Where do you find other parents or caregivers facing similar joys and challenges? Kate Swenson writes that autism "affects the whole entire family," and notes that it was nearly impossible for her to find an autism community when her son Cooper was first diagnosed. Parenting Impossible Host Annette Hines talks with Swenson about creating the blog, Finding Cooper's Voice to be a shared space for families like hers that has reached thousands. This spring, Swenson published her memoir, Forever Boy, about Cooper's world and how she navigates motherhood with four children. Hines and Swenson discuss the challenges of using an online forum to share about autism, and how publishing a book allowed Swenson more control of the narrative of her family's experience to tell the whole story. Swenson's writing creates an authentic, open, and honest space that truly resonates with others. We are thankful that Swenson is so generous in sharing her stories to be an advocate and create an online space for the autism community through her blog, Facebook, and Instagram, and we highly recommend Forever Boy as your next read. You can find her book on amazon and learn more about Swenson and her family at www.findingcoopersvoice.com.
Annette Hines host of Parenting Impossible – The Special Needs Survival Podcast Co-Founder and President Elliot Kallen of A Brighter Day an organization created in memory of Kallen's son who committed suicide have an eye-opening discussion about teen depression, stress, and suicide statistics. A Brighter Day in San Ramon, CA provides resources for teens and their parents to reduce stress and depression and prevent teen suicide.
Kallen's research uncovered shocking facts such as higher suicide rates in more affluent communities and the frightening impact of social media on increasing teen depression. Suicide is preventable. Kallen shares ways that families can support their teens by modeling how to enjoy life, slowing down, eating a daily cell-phone-free family meal, asking probing questions to learn about your teen and what's happening in their life. Concerning signs to look for include anxious body language, changes in sleeping and eating habits, hopelessness--no idea for tomorrow, concerning websites your teen is visiting and friend activities. Find help and resources as a teen or a parent clicking here: https://abrighterday.org. We would love to hear what you think about this episode. Please leave a comment: https://bit.ly/3yfQsIv
Annette Hines, host of Parenting Impossible – The Special Needs Survival Podcast hosts a minisode to address how to combat feelings of being unmotivated or uninterested in life. When you recognize that you're a little off, it's probably time to sit and reflect on your goals and make a list to identify your tolerations. Ask yourself: "What am I tolerating in my life that I should not be putting up with?" Tolerations can be simple or complex to resolve. Once you start to identify and categorize your tolerations into themes, you can can create action steps and goals to resolve them for the next 90 days or year. When you start making progress and crossing items off of your list, the emotional benefit is huge.
Please send Annette your tolerations. What are you tolerating in your life? She really wants to hear back from you. Click here: https://specialneedscompanies.com/podcasts/ to submit your comments or email her at: hello@specialneedsfamilyservices.com
Annette Hines, host of Parenting Impossible – The Special Needs Survival Podcast starts the podcast talking about her recent live video post in the Circle of Care Facebook private group open to anyone in the disability community in which she asked: "If I could do one thing for you today to make your life better, what would it be? Dream big." Coming from a place of gratitude, Annette shares how important the gift of service is through asking others how we can help.
Being a servant leader to your family and community is one of the healthy, necessary roles for dads that John Felageller shares based on his experience as a single father raising his son, Christopher who has non-verbal autism. John explains how essential his faith and social communities were to the development of his role as a dad and learning disability parenting. His communities foster the response of giving back to others after receiving support ourselves and sharing resources. John's service to others in the disability community has flourished through almost 20 years in education, serving as teacher, mentor, and director, and author. He currently serves as Ministry Relations Manager at Joni and Friends Chicago and a Special Education teacher in Chicago and is a regular contributor to Key Ministry’s Special Needs Family blog, as well as other special needs blogs including Hope Anew and The Mighty. You can read John's encouraging messages on his Facebook page: John's Blog for Special Needs Parents and learn more about his work on his website: www.johnfelageller.com
Annette Hines host of Parenting Impossible – The Special Needs Survival Podcast starts the podcast reflecting on the role of fathers in the disability community. With Father's Day approaching, Annette Hines will interview three different guests who are fathers and share unique perspectives from mothers.
Our topic in this episode is about honoring the worth of all people and the universal need to be seen that are fundamental in the lasting values Fred Rogers taught in the Neighborhood. Annette Hines talks with Ryan Rydzewski, co-author of When You Wonder, You’re Learning: Mister Rogers’ Enduring Lessons for Raising Creative, Curious, Caring Kids about Fred Rogers' enduring legacy and how his lessons continue to serve children and adults alike to ensure we sustain an accepting, curious society.
Ryan Rydzewski is an award-winning author, reporter, and speechwriter whose science and education stories span everything from schools to space travel to Mister Rogers’ Neighborhood. His book, When You Wonder, You’re Learning explores the tools Fred Rogers implemented such as curiosity, creativity, and collaboration and ways families can follow his lead. Fred was intentional every day in practicing kindness, and his values of all humanity and loving your neighbor are so pertinent to the disability community because so often we feel unwelcome, unseen, and other in our neighborhoods. Fred Rogers understood 'other' and he welcomed in everyone and made them feel seen. We highly recommend the book, and you can learn more about Ryan Rydzewski and his book by clicking here: ryanrydzewski.com.
We would love to hear what you think about this episode. Please leave a comment!
Annette Hines, host of Parenting Impossible – The Special Needs Survival Podcast starts the podcast honoring the memory of disability advocate, and mom Julie Beckett, who passed at the age of 72. Julie is a champion in the disability community who fought to allow children with disabilities to live at home while receiving care covered by Medicaid. The Katie Beckett Waiver, named after her daughter, has changed so many families’ lives for the better.
Since our topic in this episode is about changing people’s lives, Annette Hines talks with Lenora Edwards of BetterSpeech.com. about using this innovative virtual speech and language service right in the comfort of your own home! Lenora Edwards is a speech and language pathologist along with over 150 other licensed therapists with an average of 10 years of experience, available nationwide. BetterSpeech.com offers a free 30-minute consultation on how BetterSpeech.com might help you or your loved one. The disability community has been greatly impacted by mask-wearing and working with a speech and language pathologist can bring about progress if you cannot find a pathologist in your area for a young child or elder this can be an incredible resource. Areas they offer help with can include voice disorders, stuttering and fluency, reading readiness, speech sound disorders and learning to create proper facial expressions. In addition, their clients also have access to a “practice library” so adults and little ones can practice on their own what they are learning in the virtual therapy sessions. So if you are interested in getting these services (which can be covered by most health insurances) please click on BetterSpeech.com.
We would love to hear what you think about this episode. Please leave a comment!
Getting ready to retire and have a disabled adult child in your care? In this episode, Annette Hines host of Parenting Impossible – The Special Needs Survival Podcast shares her tips on the 3 Things you should consider before you retire should you have a disabled adult child? Annette goes into detail on updating your financials, looking at healthcare and health insurance, updating your “Circle of Care” and a bonus tip on estate and special needs planning. Please join Annette as she explores this important topic that affects our kids, families, caregivers, and parents in the disability community.
We would love to hear what you think about our episode. Please leave a comment!
Attorney, mother, author, advocate and founder of Special Needs Law Group, Special Needs Family Services, The Special Needs Companies, and host of Parenting Impossible - The Special Needs Survival Podcast. Annette Hines, brings personal experience with special needs to her work as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep personal understanding of raising a child with disabilities fuels her passion for quality special needs planning.
Annette Hines knows firsthand just how complex and overwhelming the legal systems and processes are for parents of children with special needs. Amidst the grief of losing her beloved Elizabeth, Annette realized that life was giving her a “second chance” to use her extensive legal expertise to help families who are going through the same challenges she faced. She authored her life story of her and Elizabeth’s powerful journey of hope in her memoir,
Butterflies and Second Chances.
Annette Hines, host of Parenting Impossible – The Special Needs Survival Podcast tackles the world of travel for families with kids with Autism as well as other special needs. Dawn Barclay, book author and writer of travel, shares with us her new book, Traveling Different -Vacation Strategies for Parents of the Anxious, the Inflexible, and the Neurodiverse. Dawn makes traveling more possible with this encouraging book and the wonderful tips she gives in this episode. Be a more confident parent by following her thoughtfully researched strategies and resources. Predictability is key in setting up a stress-free trip for you and your children. Dawn Barclay suggests introducing the concept of travel by starting small and local, along with an overnight at a friend or relative’s house. Think through each activity’s pacing and preparedness. Use programs like Wings for Autism, TSA Cares and Certified Autism Travel Professionals to help you plan a predictable trip. Dawn talks about so much more including the 16 questions you should ask cruises and tours about how autism friendly they are. Join us to learn how to plan your families upcoming summer vacation! Click on the book title to pre-order her book, Traveling Different - Vacation Strategies for Parents of the Anxious, the Inflexible, and the Neurodiverse.
We would love to hear what you think about this episode. Please leave a comment!
Dawn Barclay is an award-winning author with 30 years of working in the travel industry. She worked for her parent’s firm, Barclay Travel Ltd and then began travel trade reporting with senior or contributing editor positions at Travel Agent Magazine, Travel Life, Travel Market Report and recently Travel Report. She also writes fiction as D.M. Barr. She is available for speaking engagements and loves to hear from her readers at dawnbarclayauthor@gmail.com. To pre-order her book Traveling Different - Vacation Strategies for Parents of the Anxious, the Inflexible, and the Neurodiverse, click on the title of the book.
Does your child have big emotions, which are loud or quiet? Do you as a caregiver or parent have a challenging time with these emotions? In today’s episode Annette Hines, host of Parenting Impossible – The Special Needs Survival Podcast talks with a Psychologist, Parenting Specialist, host of Your Parenting Long Game podcast, and creator of The Long Game Method, Rachel Bailey, about raising children with big emotions. Rachel works with families to develop a long game parenting plan instead of using band-aid strategies to address kids’ emotions. Annette and Rachel talk about tips on how to regulate yourself in difficult family situations as well as Rachel Bailey’s three pillars of working on your child’s big emotions. So, join us to learn some very useful parenting strategies you can start with right now and how you can get further training on The Long Game Method from Rachel herself!
We would love to hear what you think about our episode. Please leave a comment!
Rachel Bailey is a mom of two girls, a Clinical Psychologist, Parenting Specialist, host of Your Parenting Long Game Podcast, and teacher of The Long Game Method. For over the past decade she has taught parents and children the tools for improving behavior, motivation, resilience, and self-esteem. Prior to working with parents, she was an ADHD coach, intensive in-home mentor, and psychotherapist for children, adolescents, and adults. Rachel is a frequent speaker at schools, companies, and community groups.
What are the latest updates and happenings in the World of Disability? Annette Hines host of Parenting Impossible – The Special Needs Survival Podcast gives tips on navigating the Social Security office reopening, the current state of employment and job coaching programs, and the latest in healthcare including the funding of healthcare, research, and institutional bias. Please join Annette as she explores these crucially important topics that affect our kids, families, caregivers, and parents in the disability community.
We would love to hear what you think about our episode. Please leave a comment!
Attorney, mother, author, advocate and founder of Special Needs Law Group, Special Needs Family Services, The Special Needs Companies, and host of Parenting Impossible - The Special Needs Survival Podcast. Annette Hines, brings personal experience with special needs to her work as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep personal understanding of raising a child with disabilities fuels her passion for quality special needs planning.
Annette Hines knows firsthand just how complex and overwhelming the legal systems and processes are for parents of children with special needs. Amidst the grief of losing her beloved Elizabeth, Annette realized that life was giving her a “second chance” to use her extensive legal expertise to help families who are going through the same challenges she faced. She authored her life story of her and Elizabeth’s powerful journey of hope in her memoir, Butterflies and Second Chances.
How do you empower your teen with ASD, ADHD and executive functioning challenges to transfer their video games skills into real life success? Dr. Randy Kulman, clinical psychologist, author, and founder and president of LearningWorks for Kids joins Annette Hines, host of Parenting Impossible – The Special Needs Survival Podcast to talk about his work with teens using the power of playing video games. Having a healthy balance of play is important in developing personal skills your teen will use in their adult life. Dr. Randy Kulman works with teens to detect their developed skills in video game playing, reflects on those skills and connects the skills for the teen into real world. This person-centered planning strategy helps to find a teen’s natural inclination and teaches them to use it in the real world. What are the types of play and how do you leverage one kind of play with the other? How do you encourage a healthy balance in their play diet? Tune in to find out more and learn about how your teen could benefit from LW4K.com programs using the coupon code Podcast 04. We would love to hear what you think about our episode. Please leave a comment!
Dr. Randy Kulman. is the founder of LearningWorks for Kids an educational technology company that specializes in using video games to teach executive-functioning and academic skills. He conducts neuropsychological evaluations of children with executive functioning and attention difficulties at South County Child and Family Consultants in Rhode Island. His latest project is LW4K.com a live, online, small-group executive function tutoring program that uses games such as Minecraft and Roblox to practice and improve executive functions. Dr. Randy Kulman is the author of Train Your Brain for Success: A Teenager's Guide to Executive Function, Playing Smarter in a Digital World, and The Gaming Overload Workbook. His current research projects include the development of a parent and teacher scale for assessing executive-functioning skills in children and a large survey study examining how children with ADHD and Autism use popular video games and apps.
Don’t focus on what you can’t do, but what you CAN do is great advice from Dr. Michelle Hu on raising a deaf and/or hard of hearing child. Annette Hines, host of Parenting Impossible – The Special Needs Survival Podcast, talks with Dr. Michelle Hu, pediatric audiologist, mom, and hard of hearing herself about her life’s journey and creating Mama Hu Hears website, and an online course, "My Child Has Hearing Loss, Now What?" where parents can find guidance and resources to be prepared in supporting their deaf and/or hard of hearing child. With majority of deaf children born to hearing parents, advocating for your child requires experience with school resources, and medical professionals. Dr. Michelle Hu has taken her 39 years of experience and created an online course to save time and worry for parents. What is Michelle’s top three tips to families? Listen in to learn her great advice and inspirational words to those in the deaf and hard of hearing community. We would love to hear what you think about our episode. Please leave a comment!
Michelle Hu has been a pediatric audiologist for over 12 years working specifically with the diagnosis, hearing amplification, cochlear implant evaluation, programming, and aural rehabilitation. Something unique about her is that she grew up hard of hearing herself. She was fit with hearing aids at 3 years and now utilizes bilateral cochlear implants. Her personal experience lends to her uncanny ability to relate and be a role model for others with hearing loss and source of strength and hope for parents of children with hearing loss. As a military spouse and mother of three, Michelle strives to balance family life, clinical practice, and entrepreneurship. During maternity leave with her second child, she found herself missing the relationships created in the clinic with patients and parents. Thus, Mama Hu Hears was created as a space where she shares personal and professional experiences with hearing loss and the field of audiology.
How do you help your child be successful in school? Annette Hines, host of Parenting Impossible – The Special Needs Survival Podcast talks with Jessika Shields, licensed educational psychologist, former teacher, parent of four, owner of a parent mentoring company Stronger Minds, Stronger Youth, and host of Parent Them Successful podcast, about how to utilize your schools best resource, the school psychologist. Inside schools, the educational psychologist plays many roles to support students including educational assessments, one-to-one and group therapy as well as crisis management. Outside of the school, an educational psychologist can provide a clinical diagnosis, offer a neutral voice in an educational assessment, and coach parents on advocating for their child’s needs in school. Listen in on the top three tips Jessika Shields shares with Annette Hines about what parents should do to get the most benefits for their children in working with their in-school psychologist. This episode is full of great information for parents! Please tune in! We would love to hear what you think about our episode. Please leave a comment!
Jessika Shields is an educator and licensed educational psychologist with nearly 20 years of experience in education. Her extensive career has been built upon these two principles – educating and helping others achieve more. As a wife and mother of four, she knows all too well the challenges that come with trying to do what is in the best interest of your child while trying to navigate the roadblocks that sometimes get in the way of their success, and this is why she founded Stronger Minds, Stronger Youth , a go-to resource for parent mentoring and parent education. Jessika has a passion for helping you break down barriers that may be holding your child back from succeeding academically, socially, and emotionally. Even several Southern California school districts have contracted with Jessika to bring her expert advice to their parent populations, but her favorite type of work is the direct work she does with individuals like you!
In addition, she is the host of the Parent Them Successful podcast where she continues to share a wealth of knowledge to help parents gain a sense of control over their children’s education, growth, and development. Jessika Shields utilizes both her company and podcast to provide parents with support that help them make meaningful connections that empower them to go from guessing about what to actionable steps to take next in finding solutions to problems that arise, and Jessika is your trusted guide that will help you get there.
This episode goes to the dogs! Whether a service, therapy or emotional support dog that is! Join Annette Hines, host of Parenting Impossible - The Special Needs Survival Podcast, as she talks with Rick Courtney about the world of support animals. Rick Courtney is a special needs and elder law attorney and parent of a special needs daughter and shares his experience and knowledge in owning and working with several types of support dogs. What is the difference between a service, therapy, or emotional support dog? Which type of trained dog has ADA protections in public spaces? Did you know having a service dog can foster independence, increase responsibility, improve speech and self-esteem as well as be an ice breaker in social situations! So, listen in and learn about the world of dogs and how they provide support and companionship to our disability community. We would love to hear what you think about this episode. Please leave a comment!
Rick Courtney is a special needs and elder law attorney in Mississippi. He has a special needs daughter who owns a service dog, and their family also has a therapy dog. Rick is a former Director of the National Academy of Elder Law Attorneys (NAELA) where he serves on the Trusts and Special Needs Law Sections Steering Committees and is a past President and member of the Special Needs Alliance, Inc., a national organization of special needs planning attorneys. He is a Fellow in the American College of Trust and Estate Counsel. Rick is named in Best Lawyers in America® in elder law and trusts and estates, and the firm is named in Best Law Firms in America® in elder law. In 2009, Rick was awarded the 15th Annual Theresa Award by the New York-based Theresa Foundation, for community service and professional advocacy on behalf of children and adults with special needs. He is the author of A Lawyer’s Guide to Working with Special Needs Clients published in 2020 by the American Bar Association.
It is tax time! Annette Hines, host of Parenting Impossible-The Special Needs Survival Podcast and her favorite guest, law partner and husband, Mark Worthington tackle the four top questions people ask about tax preparation and tax reporting.
- Can I claim my adult child as a dependent?
- If I charge my adult child room and board when they are living with me, is that taxable income to me? And how does this impact their Supplemental Security Income (SSI)?
- Taxation of special needs trust and SECURE Act updates.
- How are caregiver payments such as Adult Family Care (AFC) and Personal Care Attendant (PCA) taxed to the recipient?
Can you imagine the dinner table conversation at their home!? We are so lucky they love talking about taxes and simplifying what can be complicated information. So please join Annette Hines and Mark Worthington as they answer these important and popular tax questions asked by our disability community.
Annette Hinesis the founding partner of Special Needs Law Group of Massachusetts, PC, and has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for over twenty years. Her clients include individuals and families of children with special needs, the elderly, and others in the community. She received her BA from the University of Vermont, her MBA from Suffolk University, and her JD from Howard University School of Law.
Ms. Hines was recently presented the NAELA (National Academy of Elder Law Attorneys) Theresa Award for 2021 by the Theresa Foundation in recognition of her outstanding efforts and advocacy for individuals with special needs. She has been recognized as a Distinguished Citizen by ARC Massachusetts and cited for public service by both the Massachusetts State Senate and House of Representatives for her work on behalf of people with disabilities. Ms. Hines was designated a 2016 Top Women of Law from Massachusetts Lawyers Weekly and has been named to the Massachusetts Super Lawyers list every year since 2014.
Mark Worthington is Senior Counsel at Special Needs Law Group of Massachusetts, P.C. Mark received his J.D. from Northeastern University School of Law and his LL.M. in Taxation from Boston University School of Law. He is a Certified Elder Law Attorney (as certified by the National Elder Law Foundation (Massachusetts does not recognize legal specialties for certification)) and past President (2007) of the Massachusetts Chapter of the National Academy of Elder Law Attorneys. Mark has been named to the Massachusetts Super Lawyers list every year since 2008.
In 2018 he stepped down as full-time Professor of Law and Director of the Graduate (LL.M.) Program in Elder Law and Estate Planning at Western New England University School of Law to practice full-time with Special Needs Law Group. He continues as an Adjunct Professor in the LL.M. Program. He has also taught at Northeastern in the J.D. Program. Mark is admitted to practice in Massachusetts and before the United States Supreme Court.
In the last three episodes of Parenting Impossible, The Special Needs Survival Podcast, Annette Hines has been telling her story to explain how her journey brought her into the disability community as a mother, caregiver, advocate, and attorney. Now we are going to explore with the help of Shari Foos how stories can provide us with a real human connection. Shari Foos is a therapist, relationship specialist, adjunct professor, and creator of The Narrative Method. The Narrative Method is an award-winning approach to building connections between people through their storytelling. There are twelve Core Concepts within the Narrative Method. Relational Mindfulness is a core concept that promotes the humanistic practice of relating compassionately to build deeper understanding. Another concept, A.W.E. is embracing Awareness, Wonder, and Empathy to see the world through someone else’s perspectives. Each concept describes the ways in which we connect with one another. Shari shares with us that telling stories to one another allows us to be invited into belonging with others, creating mutual respect and empathy for each other. So please join us for this very insightful show! Learn more about Shari Foos's The Narrative Method, and the DIY Human Deck of Cards.
Shari Foos is a marriage and family therapist, adjunct professor, and creator of The Narrative Method, a California non-profit organization. Shari also co-founded the Bridge in 1999, a free humanities program for low-income adults at Antioch University Los Angeles. She received an MS in Narrative Medicine from Columbia University and a MA in Clinical Psychology from Antioch University Los Angeles. Ms. Foos serves on the board of the City Kids Foundation and is the recipient of the New Directions for Veterans Community Hero Award (2015) and The Antioch University Los Angeles Lifetime Achievement Award (2016). As a sought-after expert on the subject of relationships, remote group dynamics, and meaningful connection, her writing and commentary have appeared in a range of online and print publications and podcasts, including Real Simple, Huffington Post, Women’s Health, KBLA, Fatherly, Thrive Global, Shondaland, and The LA Weekly.
In the last episode of Annette Hines's three-part series of Telling Her Story, Annette talks about the relationships in her life. Learn all about Annette’s life story from finishing college to the present. It is all about the relationships and how they have carried her through the turmoil and challenges of her life. If you’d like to learn even more about Annette, check out her personal memoir, Butterflies and Second Chances: A Mom’s Memoir of Love and Loss available in paperback.
Married to her first husband right out of law school, followed by a pregnancy there after, life became difficult very quickly. Elizabeth was born prematurely with medical complications, that lead to a diagnoses of Mitochondrial Disease. Annette and her husband made a move from Virginia to Massachusetts to access better medical care and be near Annette’s family for support. Next came their second child, Caroline, who was, as doctors said “perfect.” Caroline’s entrance into the family brought about a trying sibling relationship as well as another child to nurture alongside of Elizabeth’s constant healthcare needs. The husband was not coping well with all the responsibilities of family life and Annette was having to care for him too. A mentally and physically exhausted caregiver, Annette decided it was best to end the marriage and became a single parent.
It was time to go back to a professional work life to support the girls. Annette's mom moved in to assist as a caregiver and provide support for her daughter. This was a time of adjustment as their family was not like other traditional families. Not really thinking she would ever find a life partner again; Annette is surprised when she meets Mark at a work event. They immediately connect through similar and shared marriage and family experiences. After dating for a period, they wed in a small and intimate church ceremony a few weeks before Elizabeth’s unfortunate passing. Their relationship is crucial in getting Annette through the mourning and grief over the loss of Elizabeth. Mark provides Annette with unwavering support throughout this challenging time. Annette believes that although they are “flawed” individuals they are extraordinarily strong together. People see Mark as a best supporting husband. Annette believes he is her co-star! So please join Annette and hear her story in detail on this Parenting Impossible episode of Telling Her Story, Part 3. If you would like to learn even more about Annette Hines please check out her book, , Butterflies and Second Chances: A Mom’s Memoir of Love and Loss.
In the second of a three-part series, Telling Her Story with Annette Hines, Annette shares her trials and tribulations of going back to work while continuing to be a caregiver for Elizabeth and Caroline. As many women head back into the workforce after being a caregiver at home, the obstacles can be difficult to overcome especially when you have a special needs child. Elizabeth required round-the-clock care and with very limited care options to choose from, having work flexibility and family support becomes critical to being successful in your professional job. It is really like having two jobs, one running your business and the other running your home. Moving up through the glass ceiling or as Annette says the “mommy ceiling” can be done if you find other women to lift you up, you work harder than the next person, and you stop judging and comparing yourself to everyone around you. It is not a work, life balance it is an integration of work AND life! We ask you to join us and listen to Annette’s story part two! If you’d like to learn even more about Annette, check out her personal memoir, Butterflies and Second Chances: A Mom's Memoir of Love and Loss available in paperback.
Annette Hines’s journey back into the workforce was full of starts and stops. Balancing a job and care for Caroline and her special needs daughter, Elizabeth was not easy. Lack of workforce flexibility, home care options, Elizabeth’s changing health care needs made it tough for Annette to manage it all at once. In a move to control her own narrative, Annette started her own law firm. “You’ve got to do something you love if it is going to pull you away from your family”. Now Annette was doing something she loved with the authority to make it work with her family life. This is part 2 of Telling Her Story as a caregiver, mom, advocate, attorney, a business owner and the author of Butterflies and Second Chances: A Mom's Memoir of Love and Loss
Telling your story, sharing your story with others is a good way to get your thoughts and feelings out, connect with those with similar experiences, and be truly seen. Annette Hines, host of Parenting Impossible takes this opportunity to share her story with new listeners and reconnect with her dedicated Parenting Impossible fans. With one in five peopled impacted by a condition that is disabling whether physically, intellectually, developmentally there are so many of us who can relate. Annette’s entrance into the disability community is an important story that explains her role as a caregiver, mom, advocate, attorney, and author. In fact, she has put her entire story in a book, Butterflies and Second Chances: A Mom's Memoir of Love and Loss. So please join Annette and learn about her journey. We know there are so many shared experiences out there!
Annette Hines was a young mom in her twenties when she got pregnant with Elizabeth. At five months Annette was put on bed rest until her first daughter, Elizabeth was born at twenty-nine weeks weighing in at two pounds. After nine weeks in the Neonatal Intensive Care Unit, Elizabeth was able to go home. As she grew, Elizabeth started to have seizures. It was difficult for Annette to find a team of doctors that would believe her description of the seizures Elizabeth was having. Once Annette found a supportive medical specialist, at age two and a half, Elizabeth was diagnosed with Mitochondrial Disease along with other health issues. This begins Annette’s story as a caregiver, mom, advocate, attorney, and the author of Butterflies and Second Chances: A Mom's Memoir of Love and Loss.
With record levels of unemployment and underemployment in our disability community how do we find ways to create personal achievement? Our guest, Breon Thomas shares with us his incredible neurodiverse life story of creating his own businesses, Seehim Enterprise (See stands for service, engage and encourage) and Cargo Vanpreneur . With his business’s growth, Breon is sharing his experience and knowledge with others in disability community on how to be their own entrepreneur. And if that were not enough to take on Breon is running one hundred- and twenty-miles marathon in 24 hours in sandals from Atlanta to Chattanooga, called the 1 in 5 Ultra (which stands for 1 in 5 kids has learning disabilities) on June 25th. His efforts will raise money to support one thousand neurodiverse entrepreneurs. Please check out his Instagram page to support this effort! On the release of Parenting Impossible Breon is releasing his first hip hop video on YouTube YouTube talking about what it is like to be neurodiverse! There is so much achievement here to talk about and celebrate! Please join us as we hear Breon’s inspiring story about struggles, self-discovery and living your truth.
Breon Thomas began his life in Atlanta Georgia. As he entered school for the first time, he realized he was different when moved from the general class to a special education class. Breon talks about what the social implications of him being divided from his friends and labeled as special needs. Later in his life he moved to Chattanooga, Tennessee where he graduated high school and then went to college. After a few jobs, he enlisted in the Navy. The Navy was a difficult place to work and live as a neurodiverse person because the environment is so structured and limited. Breon left the Navy while awarded the National Medal of Honor. He spent the next phase of his life rediscovering who he was and what his next steps would be. It was during this time that Breon created Seehim.enterprises and Cargo Vanpreneur creating his own path to success as an entrepreneur. He credits the strong women in his life, his mom, aunt, and grandmother for supporting him and telling him he could do anything he put his mind to no matter what type of brain he had.
Please join us for our last episode in our Spotlight Series: A Focus on Education. Annette Hines speaks with Cat Weir, Program Director and Debra Hart, Co-Principal Investigator of Think College, a part of ICI, Institute for Community Inclusion. Learning does not stop at age 18 for those with intellectual disabilities and offering those who have entered adulthood an opportunity for growth in over one hundred college programs is what Think College is all about. With the only national database on college programs for those with intellectual disabilities, families can find approved college programs with financial aid that offer person centered planning, additional support services, flexible degree, certificate, and non-degree programs. These inclusive and authentic programs help adults learn life skills like time management, social emotional interaction, trial, and error as well as other growth enhancing skills Think College has reported that these programs have enabled students with positive outcomes in life satisfaction and employment opportunities! So, listen in and learn more about what Think College could offer your young adult. As our guests say “If you don’t know, you don’t go!”
Debra Hart is the director of the Education and Transition team and co-principal investigator of the Think College Network and the National Coordinating Center for the Institute for Community Inclusion at the University of Massachusetts, Boston. She has over 30 years of experience working with students with disabilities, their families, and professionals to support youth in becoming valued members of their community via participation in inclusive K-12 education, inclusive higher education, and competitive integrated employment.
Cate Weir has spent her career working towards the inclusion and full participation of individuals with intellectual disabilities. She has spent over twenty years working to assure that students with intellectual disabilities can attend college in states throughout the US. She has served as the project coordinator and now the Program Director for the Think College Network and the National Coordinating Center for the Institute for Community Inclusion at the University of Massachusetts, Boston, since its inception in 2010, where she coordinates all project activities, including technical assistance, training, dissemination, and data collection.
This week Annette interviews returning guest, original Parenting Impossible producer, mentor, popular author, and coach on ADD, Dave Greenwood, to talk about his second book, Burnout. As the pandemic has raged on people have become tired, weary, less patient with one another. When we start despising our life, and the people in it and cynicism sets in we feel disconnected from the people in our life. Is this a sign of burnout? Join us as Annette Hines and Dave Greenwood tackle this very timely subject! In Dave Greenwood's research for his book, he interviewed over twenty people to understand the signs of burnout and ways to cure it. He initially started his research because he could not find information on how to deal with his own. The way we are living in this time of Covid has caused us to lose our natural breaks in our day, our daily boundaries are blurred and gray. Caregivers, new moms, parents with young children are managing activities and responsibilities all day right from the kitchen table. How have we become co-founders of burnout, locking us into a never-ending cycle of stress? What are the physical and mental signs of burnout? How do we learn to not overcommit? Join us as Annette and Dave discuss how to recognize burnout and tips on how to fix it
Dave Greenwood is an author, entrepreneur and has a passion for helping others stay focused whether they have ADHD or not. His first book, Overcoming Distractions-Thriving with Adult ADHD, explores how those successful in business deal with distractions and put the “gift” of ADHD to beneficial use in their lives. In addition to a book, Dave has owned a Boston restaurant, karate school and started his own public relations firm. His second book, Burnout comes out this year and tackles the questions about our stressed-out hustle culture world.
Please join us for the second episode of our Spotlight Series: A Focus on Education. We are excited to bring you Alexandra Ullrich, the Program Manager and Co-Creator of the Easter Seals program, College Navigator. Alexandra helped start this program in 2018, and now it has over one hundred clients. The College Navigator provides individualized services in person and virtually to college students with disabilities supporting their goals, strengths, and needs and not necessarily in their subject of study. The most common area of support is executive functioning, students learn to avoid cramming a 20-page paper the night before it is due. Other areas of support include teaching self-advocacy in authoring emails, working on group projects, and speaking with teachers, as well as learning to access numerous services that colleges provide like career services and resources in the local community.
The transition to college is a momentous time in a young person’s life as they head out on their own for the first time without consistent parental support. We hope you will join us to learn more about the Easter Seal’s College Navigator and how they help prepare and support college students for employment and independent living.
We are thrilled to bring you our first episode in our spotlight series A Focus on Education with an interview with the dynamic advocate and supporter, Mary Sokolowski, Ph.D. from College Internship Program (CIP). The College Internship Program (CIP) is a private young adult transition program for individuals 18-26 with autism, ADHD, and other learning differences offering comprehensive and specialized services.
Mary helps us kick off this series with a conversation about what people with learning challenges can and should have the opportunity to achieve. We talk about the article that Mary wrote a few years ago which is what prompted us to invite her to be on the show.
Please join us as we head down this path of transition, college and beyond for people with disabilities. Mary gives some great takeaways and ideas for parents, families, and adults with disabilities on how to start to navigate through this period of uncertainty and change. We talk about how much learning is done outside of the classroom and how programs like CIP really “get” this about students with autism, ADHD and other learning challenges.
We know that this episode is going to shine a little light on transition and bring important and compassionate information to families and self-advocates. We can’t wait for you to listen!
Before joining CIP in 2018, Mary worked for twenty years in the field of post-secondary education as an instructor and administrator. She served as adjunct faculty at several colleges and universities in the northeast. Mary also worked as Director of Federal Relations at SUNY-Binghamton and Director of Community and Government Relations at Salve Regina University. For the past two years, Mary has served as the Admissions Coordinator at CIP’s Berkshire location.
As she joins the National Team at CIP, Mary brings with her a passion for working with students with learning differences and a desire to communicate effectively with diverse individuals and groups.
This week Annette Hines, host of Parenting Impossible, explores in her introduction a new year, a new look at where we are in our finances, financial planning, and support services in the world of Covid as we move into year three of the pandemic.
The guest interview is a re-broadcast of one of our favorite episodes! Leah Moore, an author, mom, teacher, and advocate raising awareness for cri du chat. Leah’s story of raising three kids, one with Cri du chat syndrome is full of relatable stories of triumph and hardships while navigating the world of disability. Recently Leah released a book sharing her family’s journey, Loving You Big. This book is a memoir celebrating life’s victories and the profound impact of kindness. Please join us for this important and uplifting conversation.
In this week’s podcast, Annette speaks with Attorney Tracey Ingle and speaker, coach, and Psychologist Dr. Sarah Reiff-Hekking about setting goals for yourself for the new year. Tracey is the founder of Ingle Law and works with clients to create their estate plans and plan out the future. Sarah is the founder of True Focus Coaching Inc and works with clients to transform their lives and businesses.
Setting goals can feel overwhelming for some people. Some may not be able to visualize their goals or be able to think of goals in the long term rather than short term. The first thing Sarah mentions to people is to NOT do resolutions as they are really only a will power thing and will only get you so far. You should create a completed vision of your goal – what will it look like when you reach it? Once you have that in mind, you work backwards to create the steps to get to this goal. This does not have to be figured out right away. You will want to break it into smaller pieces and spend at least 5-10 minutes every so often working on some of the details to get you to your goal.
Another important key is to pick only one or two goals and make them realistic. Most of us including those that are caregivers, are already too stressed and pushed to their limits. Adding a huge list of unrealistic goals to accomplish is a sure way to chip away at your personal energy and motivation levels. Don’t try to do it all yourself. Delegate if possible. You may find someone that would love to do that task for you or maybe someone will have an easier and quicker way to do it.
Tracey uses systems with her clients to keep them on track with their estate plan goals. There are clear steps as to who does what next and by what date. Keeping clients on track and moving toward their goals keeps the momentum going. Tracey even sends out congratulations cards to clients when their estate plan goals are met and are complete.
Annette, Tracey and Sarah all agree that getting support and asking for help is important. It is human to get stuck and need assistance. It is not a sign of failure and not a sign that you are not good enough if you can’t do it alone. Sarah leaves us with the thought that “Success never happens in a vacuum.”
If you would like to contact Attorney Tracey Ingle, you may find her on her website Ingle Law, as well as on Facebook and Linked In.
Sarah Reiff-Hekking can be found at True Focus Coaching Inc, on Facebook, Twitter and Linked In
Please send us your comments:
As Annette mentions in the intro, she recently purchased a building in Massachusetts. As of January 1, 2022, Special Needs Companies, Special Needs Law Group and Special Needs Family Services will all be housed in this new location. They will be working with designers and contractors to create a family friendly environment that is special needs accessible. Annette wants to hear from you – what is something you would like to see or something that would make your visit more comfortable when you visit a professional’s office. Of course they will focus on ramps and more handicapped parking but are there other items that you would like to see or were maybe lacking in your last visit to a professional’s office? Please reach out HERE and let us know!
For information on other topics, please also check out Special Needs Companies. For legal advice, inspiration, and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about - Contact Us!
Please Leave a Podcast Review
Please consider leaving a podcast review for Parenting Impossible – The Special Needs Survival Podcast on iTunes. More positive ratings and reviews mean more new listeners are introduced to this informational and inspirational podcast. Look at the bottom of this page for the purple oval that says “Enjoying the podcast? Leave an iTunes review here.” This will take you over to the iTunes site/app where you will be able to login and leave a review. We really appreciate it!
You can also join our free Facebook group for the disability community, the “Circle of Care,” or watch the webinars and other speaking events on YouTube. The purpose of this community is to create a space for people to be themselves, ask questions and get support and answers, so please share these resources with your friends!
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
We are now at that time of the year when everyone should sit down and review their current special needs plan. Time to make sure your planning is correct, in good shape and is planned out for what is best for your family. This is one of Annette’s favorite podcasts to do and it has become an annual episode to help listeners create checklists to go over their own family’s plans. And what if you don’t already have a special needs plan? Well, this is the best time then to start getting things organized and begin thinking about the details you will need to start planning out the future.
Annette has 6 tips to help you review your current plan or begin creating a new one:
- Take inventory of your assets. What do your accounts look like? Have you made any large purchases, bought any real estate? What does your debt look like? This may be a good time to consider looking into working with a financial advisor if you don’t already have one.
- Check out the people in your documents. Are the people you have chosen to list in your future plans still around, do you need to make changes? If you don’t already have a plan, start thinking about people you want to name as potential trustees or guardians.
- Have there been any changes to laws? Are there any laws that may require you to adjust any parts of your plan or laws that may require you to rewrite something entirely?
- Have there been any major changes in your family? Has anyone passed away, gotten married, divorced or had a child? Your plan will also need to change and grow as your children change and grow.
- Write down or update your wishes or your “Letter of Intent.” What will someone need to know about your family, your special needs child if you were to pass away unexpectedly. Personal details can be very helpful for those who will take over the care of your child, so they will be able to make decisions as if they were you.
- Talk to your family about your plan. This can be an uncomfortable topic within families, but it is important that they understand some details such as where the assets are held, what your healthcare wishes are and is there is an opt in clause to name a few.
It’s important to have some sort of planning in place and to keep it as updated as you can. Annette recommends checking in with your estate planning attorney every 3-5 years at least unless you have major changes that need updating immediately. If you are just starting to plan, start small. Create checklists and begin by getting things organized and listed on paper. Ask for referrals for financial planners and estate plan attorneys. This is important for your family’s future and for you to know they will be taken care of when you are no longer around.
For information on other topics, please also check out Special Needs Companies. For legal advice, inspiration, and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about - Contact Us!
Please Leave a Podcast Review
Please consider leaving a podcast review for Parenting Impossible – The Special Needs Survival Podcast on iTunes. More positive ratings and reviews mean more new listeners are introduced to this informational and inspirational podcast. Look at the bottom of this page for the purple oval that says “Enjoying the podcast? Leave an iTunes review here.” This will take you over to the iTunes site/app where you will be able to login and leave a review. We really appreciate it!
You can also join our free Facebook group for the disability community, the “Circle of Care,” or watch the webinars and other speaking events on YouTube. The purpose of this community is to create a space for people to be themselves, ask questions and get support and answers, so please share these resources with your friends!
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
As the year winds to an end, we begin to think about the new year and how prepared are we are for the future. What planning will we need to do, what will we need to change, what worked well, what didn’t work well. For special needs families, the planning can sometimes be a little more challenging when it may include legal decision making regarding guardianship. In this podcast episode, Annette goes over some of the different types of guardianships (or conservatorships) there are and other important legal documents to have, as well as the importance of making sure the supported person is at the center of the decision making process.
Annette begins by discussing some of the national and local developments that have taken place. The National Guardianship Network has called for a reform of the guardianship system and has proposed a guardianship bill of rights. They have proposed limiting guardianships where possible, maintaining person centered planning, right to counsel, supported decision making and better monitoring of guardianships to address abuse. Congress is also considering funding a national court improvement program. The Massachusetts Guardianship Policy Institute has brought about many changes in the guardianship process since 2015 including supported decision making.
Annette then discusses the Brittney Spears case and how it brought so much national attention. Brittney was allowed almost no freedoms and every part of her life was controlled though she was performing and making money. This brought about the question of what does incapacitated look like? How can she be working and earning money, yet still need guardianship?
Annette discusses one of the most important parts of this whole process – person centered planning. When you are planning for your special needs individual, you need to make sure they are at the center of this planning. You have to figure out first what decisions the individual can make and where they will need supports. Then review the list of available supporters and who may be preferred. Annette says, “remember that the supported person is at the center of the team and their voice is the most important one.” They need to have their own voice and be able to participate in their own future. Supported decision making is important – here are two online tools to help: Supported Decision-Making and Honoring Choices Massachusetts.
Annette closes with the view that families will know what is best for them. There is no one right answer to the legal decision making process. The most important part is to remember Voice and Choice – the supported person should have his own say if he is able to and he should be at the center of all planning for his future supports.
For information on other topics, please also check out Special Needs Companies. For legal advice, inspiration, and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about - Contact Us!
Please Leave a Podcast Review
Please consider leaving a podcast review for Parenting Impossible – The Special Needs Survival Podcast on iTunes. More positive ratings and reviews mean more new listeners are introduced to this informational and inspirational podcast. Look at the bottom of this page for the purple oval that says “Enjoying the podcast? Leave an iTunes review here.” This will take you over to the iTunes site/app where you will be able to login and leave a review. We really appreciate it!
You can also join our free Facebook group for the disability community, the “Circle of Care,” or watch the webinars and other speaking events on YouTube. The purpose of this community is to create a space for people to be themselves, ask questions and get support and answers, so please share these resources with your friends!
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
The holiday season can be a stressful time if you have lost a child or a loved one. As we have seen over the past 2 years now, it can be stressful also when our loved ones are still with us but due to the pandemic and closures and rule changes, we may be separated and not have access to see them or be with them. In this podcast episode, Annette gives us her tips on how to thrive this holiday season and how to survive the holiday with both sorrow and joy in your heart.
Annette begins by saying how she feels the world seems so much more unsettled in 2021 than it did in 2020 during the main part of the pandemic. People seemed so much nicer, more forgiving and accepting in 2020. In 2021 it seems tempers are flaring, people are angrier, they are lashing out. We are seeing higher expenses, staff shortages and people are struggling to access goods and services. There appears to be so much anxiety and frustration out there it is hard for people to relax and find balance and peace.
Annette recently attended a business coaching meeting where they had a monk as a guest speaker. He mentioned something that resonated with her – how the human heart is amazing that is can hold both sorrow and joy at the same time. People today are out of balance, they can’t recognize they hold both sorrow and joy. So many are unhappy that things are not going back to the way they were. We need to accept the sorrow of the past and embrace the joy of today and what is to come. Once we get to this point, we can be at peace.
Annette’s mentions her 4 tips to thrive this holiday season:
- Food: have a great meal, eat your favorite foods, start new food traditions. If your loved one is still with us, take them out to dinner or lunch or pack a meal of their favorite foods and take it to them
- Decorate: decorate a room or a special place and add things that remind you of your loved one. If you are able to visit a loved one that is still with us, take decorations to share with them.
- People: celebrate the people you love, the ones that are here as well as the ones you have lost. If you are able to, bring the celebration to your loved ones.
- Tell Your Story: this is Annette’s biggest and best tip, talk about your loved one, share stories, share your experiences with them. You do not have to have a blog or a podcast or even write a book, just share your stories with your friends and family.
- Bonus Tip – Take Care of Yourself: practice the power of no, if you don’t want to do something, say no. Maybe you are just not ready to at this time, but you will get to that point eventually. Your first priority is to take care of yourself though and allow yourself to grieve if needed
For information on other topics, please also check out Special Needs Companies. For legal advice, inspiration, and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about - Contact Us!
The end of a year tends to have people thinking about what they should do to plan for the new year and what changes they may need or want to make. While fitness and health goals are generally always on that list, so is financial planning for the future. Financial planning in general can seem to be a daunting task but it becomes a bit more challenging for special needs families and planning for your disabled child’s future.
On this week’s podcast episode, Annette speaks with James “Jim” Grace, the Director of Wealth Management with Silver Pine Capital. Jim, who has been a financial advisor for over 12 years, has taken on a more “person centered” approach to financial planning and working with special needs families with complex issues. Jim also has a podcast called The Financially Mindful Podcast, which offers insight into various aspects of financial planning.
The financial planning approach Jim takes with his clients is not the traditional sit with an advisor, pay an upfront fee, send over your financial information, and then wait a short time for your financial plan to be created and the report sent to you. Jim feels this approach does not allow for changes and updates that may need to happen over the next few months/years as your financial situation and goals change.
A More Personalized Family Approach
At Silver Pine Capital, their approach is to sit with a client to determine what they are looking to accomplish, determine how much time they will need to spend with the client over the next few months, generate the fee and then divide that by 12 and bill monthly. This allows them to start with the client’s current financial position, meet on a regular basis at least once a month and build their financial plan over time. Sometimes this is referred to as “financial coaching,” where someone spends more time with you to assist you in your financial plan.
With this more personalized approach, they are able to develop a relationship with a special needs family, find out what is important to them, assist them in getting organized and then offering recommendations as they move along according to where the family is currently and what they hope to get to. They become part of your family’s “team” for financial planning.
3 Steps to Begin Your Financial Planning
Jim says there are roughly 3 steps you can work on to get your financial planning started. First, take a breath then get yourself organized. Pull the information to all your accounts and put them into one place either in some version of Fintech software, a spreadsheet or even just a paper note pad. This allows you to take inventory of all your accounts and you can then work on tracking your spending and working out a budget, as well as cleaning up any accounts that are no longer needed or wanted.
The next step is to sit down and decide what is important to you, what are you looking to accomplish with your financial plan. Be specific with your goals. This step can be challenging for some as talking about money and the future can be very stressful, especially so if you have a special needs child you are planning for.
Once you have all your goals and what you would like to accomplish figured out, you then need to prioritize these goals. Unfortunately, not many families will have enough money to be able to plan for all their goals. You will need to prioritize what is the most important down to the least important. Once you have this accomplished, you are then ready to begin to develop your financial plan.
Reach Out to James “Jim” Grace
If you like to reach out to James “Jim” Grace, or would like more information, you can reach him through Silver Pine Capital as well as on Linked In.
For information on other topics, please also check out Special Needs Companies. For legal advice, inspiration, and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about - Contact Us!
Caregivers are often the unseen and overlooked part of special needs care. In this podcast episode, Annette speaks with Jessica Ronne, an author, caregiver advocate, and mom of 8, about caregiver support, her caregiver nonprofit The Lucas Project, her blog “Jess + the Mess” and her 2 books “Sunlight Burning at Midnight” and “Blended with Grit and Grace.”
Jess’ family story is one of heart break that leads to happiness. Her second child Lucas was born profoundly disabled due to a stroke in utero. A few years later, her first husband passed away from brain cancer leaving her a widow at 33 with 4 children under 7, one profoundly disabled. Jess had been blogging throughout all this as writing to her is a form of release. A chance comment on her blog from one of her followers lead her to her current husband – his wife had passed away from brain cancer around the same time as Jess’ husband. They have been married now for 11 years and have a blended family of 8 children.
New child support guidelines recently became effective in Massachusetts on October 4, 2021. We felt it would be a good time to bring back a podcast Annette did last year with husband Mark Worthington in which both attorneys discuss divorce when you have a special needs child. While a majority of these new child support changes affect standard family law matters relating to divorce, a few will affect special needs planning. These changes mainly are regarding Social Security and how these benefits are viewed as income as related to the payor or the recipient. We recently released a blog on these new Massachusetts child support changes which you can read here.
There have also been a few other Social Security related matters recently introduced, unfortunately many are stuck in Congress. One in particular notes that Social Security rules related to benefit levels are so outdated that it forces disabled and elderly individuals into poverty. The Social Security system needs and overhaul but they say they can’t afford it.
Make Your Voice Heard!
This is the time to make your voice heard! Talk to your policy makers, politicians – tell them what you need, what you want, tell them about your situation. If you are not sure how to contact or find these people in your area, please reach out to us at Special Needs Companies and we will do our best to assist you with the information.
In this prior episode of Parenting Impossible from 2020, Annette and her husband Mark Worthington discuss what you need to consider during the divorce process as a parent of a special needs child. Mark is Senior Counsel at Special Needs Law Group of Massachusetts and a Professor of Law at Western New England University School of Law. He has also been named to the Massachusetts Super Lawyers list every year since 2008.
Divorce Brings New Challenges For Special Needs Parents
Annette and Mark begin the show with a conversation about the increased number of people filing for divorce during the pandemic. The rise comes as more people have been forced to spend extended periods of time quarantined together. While divorce is a stressful process in general, it comes with an additional set of challenges for couples with special needs children.
Annette begins with her advice on creating a trust for child support. While she acknowledges each situation is different, she generally believes most cases do not require one for children under the age of 18. Once the child becomes an adult, a new plan must be put in place.
The Importance of Special Needs Planning
Annette and Mark also share their thoughts on the importance of planning for the future. This includes figuring out what will change once your special needs child becomes an adult, health insurance options and estate planning. The couple breaks down some of the options that are available and why it’s so important to lay them out during the divorce process.
For information on other topics, please also check out Special Needs Companies. For legal advice, inspiration, and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about - Contact Us!
Please Leave a Podcast Review
Please consider leaving a podcast review for Parenting Impossible – The Special Needs Survival Podcast on iTunes. More positive ratings and reviews mean more new listeners are introduced to this informational and inspirational podcast. Look at the bottom of this page for the purple oval that says “Enjoying the podcast? Leave an iTunes review here.” This will take you over to the iTunes site/app where you will be able to login and leave a review. We really appreciate it!
You can also join our free Facebook group for the disability community, the “Circle of Care,” or watch the webinars and other speaking events on YouTube. The purpose of this community is to create a space for people to be themselves, ask questions and get support and answers, so please share these resources with your friends!
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
This week is Mitochondrial Disease Awareness Week, which is a cause very dear to Annette’s heart. Annette’s daughter Elizabeth passed away back in 2013 from mitochondrial disease. Every year, during the third week of September the mitochondrial disease community comes together to bring awareness and educate others on this rare genetic disease. MitoAction is a nonprofit organization which started in 2005 from a New England support group. During the awareness week, MitoAction encourages others to participate in and organize various events. For Wednesday, which is the release day of this podcast, they are supporting “Light a Light for Mito” which is held to remember your loved ones lost to mito. Please be sure to wear your #greenformito, join our Facebook event and share your light and loved one’s photo memory on our event page “discussion” wall. For other Mitochondrial Disease Awareness Week events, please check out MitoAction’s page here.
Mito-Mom
This week’s podcast episode features another “mito-mom” – Maria Hopfgarten. Maria was also one of Annette’s first podcast guests back in 2019. You can listen to that podcast episode here. Maria is a blogger, author, President of the nonprofit Miracles for Mito, wife and mom to daughter Sarah and Jacob. Maria just released her first book, “Letters to Jacob: Grieving the Loss of a Child”, which is based on letters she wrote to her son Jacob after he passed away from mitochondrial disease back in 2016. Annette and Maria speak about coping with grief and how Maria’s blog about her son Jacob eventually became a book.
Letters To Jacob
Maria’s blog “Moments with Jacob” started out as a way to keep family and friends advised about Jacob and how he was doing. Maria also realized that writing was very therapeutic for her and helped her gain a perspective when there were major decisions to be made regarding Jacob’s health. When Jacob passed away, writing actually became a tool for her to process whatever was going on. The blog moved from information about Jacob, into letters to Jacob about her day and how she was doing. These letters eventually became her book “Letters to Jacob.”
Grief
Annette and Maria also discuss grief and how it changes over time. Maria says, “it’s not like grief goes away, but grief 5 years later looks a little bit different than the week after you lose your child.” Maria also says that each family member will deal with grief on their own path and on their own timeline. You may be processing grief differently from your spouse or your other children. The critical thing is to be open and let each other know you are there for them and that it is ok to talk about that family member that passed away.
Final Tips
Maria leaves us with some final tips to help work through your grief. If you are a friend or family member, be there for each other. Be there for support, pull up a chair and hold their hand. Allow them to talk about what they are going through and allow them to talk about their child. Be a great listener and a great storyteller. Remember funny and loving stories, let them know that person is still in their heart and mind even though they are no longer here.
Maria also says there is no schedule to grief. Grief is your own journey to take in whatever time frame you need. Don’t be too hard on yourself. Do what is best for you. Find what works for you to keep your child’s memory alive. Maybe it is writing or maybe planting a tree in the garden and watching it grow. It is ok to create new traditions and honor old ones as well.
Reach Out to Maria
You can reach out to Maria on her blog, on Facebook, and Instagram. You may also reach her at Miracles for Mito. Please be sure to get yourself a copy of her new book “Letters to Jacob” as well.
For information on other topics, please also check out Special Needs Companies. For legal advice, inspiration, and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about - Contact Us!
Please Leave a Podcast Review
Please consider leaving a podcast review for Parenting Impossible – The Special Needs Survival Podcast on iTunes. More positive ratings and reviews mean more new listeners are introduced to this informational and inspirational podcast. Look at the bottom of this page for the purple oval that says “Enjoying the podcast? Leave an iTunes review here.” This will take you over to the iTunes site/app where you will be able to login and leave a review. We really appreciate it!
You can also join our free Facebook group for the disability community, the “Circle of Care,” or watch the webinars and other speaking events on YouTube. The purpose of this community is to create a space for people to be themselves, ask questions and get support and answers, so please share these resources with your friends!
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
This week features a very special back to back, two podcast episode release as Annette speaks with two guests who were interviewed for a recent Today Show Article called “Autism Wars.” Today’s episode features Annette’s interview with Amy S.F. Lutz, an author, vice president of the National Council on Severe Autism (NCSA), and a mom to 5 children, her oldest son Jonah having severe autism. Amy also became so interested in the history of autism due to her son’s issues, she went back to school and is currently seeking a doctorate in the history of medicine. Annette and Amy speak about the “Autism Wars” article, severe autism, and extreme caregiving.
Severe Autism
Severe autism looks very different from very mild forms of autism – this is why autism is noted as “Autism Spectrum Disorder.” Autism can be very mild on one end of the spectrum or very severe on the other end, with a wide range of levels in between. A severely autistic individual will have profound intellectual disabilities, can be very aggressive and exhibit violent behavior, and are often very unstable and can potentially harm themselves as well as others. Severely autistic individuals also usually require exceptionally trained staff and specific supports and programs due to the challenging behaviors they often have. While individuals with mild forms of autism are often able to live somewhat typical lives on their own, those with severe autism generally need extra support and specific care for most if not all of their lives.
Autism Wars Article
Most parents of severely autistic children use a common-sense position based on their experience with their children. Unfortunately, as the Today Show article “Autism Wars” conveyed, these parents often face criticism from some autistic adults and some that view their own autism diagnosis more as an identity rather than an illness or impairment. Some of these autistic adults tend to label parents of severely autistic children as ableists - that these parents don’t really love their children and they are only sharing things about their child to gain attention for themselves. Some autistic adults also feel that the parents of severely autistic children are violating their children’s rights by sharing items about them publicly on social media or other platforms. Unfortunately, most severely autistic children do not have the capacity to consent to this sharing. Most parents respond saying if they are unable to share for their children, then their children’s story about severe autism does not get told. The public may only then see the mild story of autism life and not the challenges those with severe autism face.
Extreme Caregiving
Amy also goes into the topic of extreme caregiving which relates to the book by Lisa Freitag “Extreme Caregiving: The Moral Work of Raising Children with Special Needs.” Extreme Caregiving is the care that requires extra effort and supports and goes on longer than you would normally think. Things like needing nursing care, constant around the clock care and needing extra supports through most, if not all of their adult lives. It offers recognition of the challenges these parents face and supports they need to care for their disabled child. It also states how many people in society think these parents should just “put a happy face on it” and push through it.
Final Tips
Amy leaves us with these tips, words of advice: If you are not living with someone with severe autism, not living that life day to day, please know that severe autism is much different than what most people generally view and think about autistic individuals. Most will think of what they see in the media today, for instance the movie Rain Man, those on the mild end of the autism spectrum. Often the families of severely autistic individuals need very specific intensive disability supports that those on the mild end of the spectrum do not need. Amy would just like everyone to understand why the families with severely autistic individuals fight for their loved ones and speak out for them.
Reach Out to Amy
Amy can be contacted through her website or through the National Council on Severe Autism. Amy’s books, We Walk, Life With Severe Autism and Each Day I Like It Better are also available. To learn more about the Better Care Better Jobs Act Annette mentioned in the podcast, click here for a download from the United States Senate.
For information on other topics, please also check out Special Needs Companies. For legal advice, inspiration, and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about - Contact Us!
Please Leave a Podcast Review
Please consider leaving a podcast review for Parenting Impossible – The Special Needs Survival Podcast on iTunes. More positive ratings and reviews mean more new listeners are introduced to this informational and inspirational podcast. Look at the bottom of this page for the purple oval that says “Enjoying the podcast? Leave an iTunes review here.” This will take you over to the iTunes site/app where you will be able to login and leave a review. We really appreciate it!
You can also join our free Facebook group for the disability community, the “Circle of Care,” or watch the webinars and other speaking events on YouTube. The purpose of this community is to create a space for people to be themselves, ask questions and get support and answers, so please share these resources with your friends!
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
This week features a very special back to back, two podcast episode release as Annette speaks with two guests who were interviewed for a recent Today Show Article called “Autism Wars.” Today’s episode features Annette’s interview with Kerry Magro, who is an award-winning national speaker, a best-selling author and a role model in the disability community. Annette & Kerry speak about the “Autism Wars” article, disability in the workplace, bullying, unity and inclusion.
As a child, Kerry was non-verbal at 2.5 years and diagnosed with autism at age 4. Kerry was not able to speak in complete sentences until age 7 and went through years of therapy to get where he is today. Kerry has a doctorate in Educational Technology Leadership and is currently the CEO and founder of KFM Making a Difference which is a non-profit corporation that focuses on disability advocacy and housing.
Autism Wars Article
While most people don’t like the “Autism Wars” title of the Today Show article, thinking “war” is too strong, Kerry does feel there has been a divide in the community for quite some time between parents of autistic children and autistic adults. There are those on the autistic adult side that feel that parents of autistic children share too much and parents who feel that autistic adults don’t share enough to allow them information they feel they need. There needs to be unity, inclusion – both sides working together rather than separate. The article did have a positive note for Kerry that many parents reached out to him about finding advocates and building friendships between parents and autistic adults.
Social Media Sharing
Another portion of this autistic divide is on sharing on social media. Some autistic adults feel that some parents overshare videos and photos on social media of their autistic children, basing this on the child being too young to consent. Sharing in smaller, local groups for educational purposes can be beneficial but sharing to Facebook in larger groups might not. Kerry mentions there is toxicity in social media and sometimes it is best to think before you share anything especially if it may cross a privacy line.
Disabled in the Workplace
Kerry also speaks about the disabled in the workplace. Statistics say that up to 90% of autistic adults are either unemployed or underemployed. Kerry notes there should be a better onboarding process for disabled individuals possibly offering a one-day job trial or having a speaker talk to them about their experiences. Annette asks what smaller businesses can do to be more disability inclusive in their hiring process. Kerry mentions to make sure your business keeps up with ADA accommodations for disabilities, having past employees offer testimonials and making sure your job listings note that you are open to hire anyone. Unfortunately, there are a few job listing sites that will automatically keep out resumes that list words regarding “disability.”
Bullying
Bullying is another topic that Kerry speaks of often to parents. Kerry mentions we need to realize though that bullying does not just affect school age children. There is a rise of bullying lawsuits in the workplace and people with disabilities being taken advantage of. Everyone should have a safe environment to work in. October is National Bullying Prevention Month as well as National Disability Employment Awareness Month.
Final Tips
Kerry leaves us with his tips for what he would say to parents with autistic kids and disabled adults about coming together, being in unity. Kerry feels each side is allowed to disagree but should take more time to listen and be more constructive in nature. Don’t talk over each other. Possibly find a neutral mediator to listen to both sides of the arguments and offer their thoughts. Disability groups are already facing challenges from outside the community. They should come together, work together and be stronger together.
Contact Kerry
If you would like to learn more about Kerry Magro, you can find him on Facebook, Twitter, and Instagram. To reach out to Kerry about speaking at your event, please click here. To find out more about Kerry’s books, click here. Also, to learn more about the groups Annette mentioned in her intro, click each one: Perkins School for the Blind and SMILE Mass.
For information on other topics, please also check out Special Needs Companies. For legal advice, inspiration, and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about - Contact Us!
Please Leave a Podcast Review
Please consider leaving a podcast review for Parenting Impossible – The Special Needs Survival Podcast on iTunes. More positive ratings and reviews mean more new listeners are introduced to this informational and inspirational podcast. Look at the bottom of this page for the purple oval that says “Enjoying the podcast? Leave an iTunes review here.” This will take you over to the iTunes site/app where you will be able to login and leave a review. We really appreciate it!
You can also join our free Facebook group for the disability community, the “Circle of Care,” or watch the webinars and other speaking events on YouTube. The purpose of this community is to create a space for people to be themselves, ask questions and get support and answers, so please share these resources with your friends!
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
The Britney Spears guardianship case has brought the topic of guardianship into the spotlight lately. People all over the world want to know more about what guardianship is and why it is used. In this podcast episode, Annette goes over a few of the many guardianship questions she has received from listeners and followers. Please note that guardianship laws do vary from state to state. Please check with your state for their specific guardianship laws and procedures before beginning the guardianship process.
A Way to Connect the Disability Community
Annette opens the episode with a little explanation as to why she began this podcast. Over 20 years ago, as a special needs mom, Annette struggled to find the information she needed for her daughter Elizabeth. Elizabeth was born with mitochondrial disease, had a profound brain injury and was wheelchair bound. Annette would constantly find one piece of information she needed in one place, then would have to hunt down another piece somewhere else. There was no one place to gather all the information she needed. This podcast was a way to try to help connect resources with families, professionals, and other interested parties in the disability community – to connect everyone together in one way, one group. Annette also created Special Needs Companies and the Facebook group Circle of Care to offer resources and a way to connect the disability community as well.
Terminate a Guardianship
The first guardianship question Annette goes over is how do you terminate a guardianship? Annette explains this will require a trip back to court and medical documentation. This medical evidence is needed to prove to the court that the previous incapacity the individual had that necessitated the guardianship before, is now changed and that person is now capable of making decisions for themselves. A full guardianship may now be able to go to a limited guardianship, or a guardianship may be able to be terminated completely or go to an alternative form of guardianship. Many states have gone from not having any alternatives to guardianship to now having supported decision making laws. These allow a person with capacity to have a group of supporters assist in their decision making but the ultimate decision is left to the disabled person rather than left to the guardian in a guardianship situation.
Right To Counsel
Annette also goes over the question regarding “right to counsel” within a guardianship case. Unfortunately, this varies from state to state and there is no uniform right. An individual may not automatically be appointed counsel because they are the subject of a guardianship petition. The individual would need to understand that they need to hire their own counsel at their own cost if they wanted to fight the guardianship action. This is not something that someone with diminished capacity may understand. Nationally though, several organizations are trying to come up with best practices and guidelines where each state would have right to counsel available in all circumstances, though this would be challenging due to time and financial issues.
Find Assistance in Your State
Annette would like to encourage each listener with guardianship questions to seek legal support in your own state. There are a few networks to go to find an attorney: NAELA, Special Needs Alliance and the Academy of Special Needs Planners. You can also possibly find answers to your guardianship questions at the National Guardianship Association.
Please Leave a Podcast Review
As Annette mentioned, please consider leaving a podcast review for Parenting Impossible – The Special Needs Survival Podcast on iTunes. More positive ratings and reviews mean more new listeners are introduced to this informational and inspirational podcast. Look at the bottom of this page for the purple oval that says “Enjoying the podcast? Leave an iTunes review here.” This will take you over to the iTunes site/app where you will be able to login and leave a review. We really appreciate it!
You can also join our free Facebook group for the disability community, the “Circle of Care,” or watch the webinars and other speaking events on YouTube. The purpose of this community is to create a space for people to be themselves, ask questions and get support and answers, so please share these resources with your friends!
For information on other topics, please also check out Special Needs Companies. For legal advice, inspiration, and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about - Contact Us!
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
As a child, Erich Shafer did not understand what he was and how he was different. He knew he had balance issues and had to go to speech therapy every week for a heavy lisp to make himself “better.” It wasn’t until later in life that he discovered he had Dyspraxia (Developmental Coordination Disorder) and was on the Autism Spectrum. In this podcast episode, Annette speaks with Erich about his neurodiverse journey and how he overcame his childhood struggles to create a successful and fulfilling life for himself.
Childhood Years in Therapy
Erich spent many of his childhood years going through what is now known as ABA Therapy. He felt there was a value placed on the items he had, what he wanted to do and the friends he wanted to see. Erich felt the value was his behavior, his compliance. If he did not act a certain way, he was not allowed to watch television, to go outside, to play with his friends, to do the things he wanted to do. Erich felt his therapy was similar to “clicker training” with dogs – a good behavior was rewarded with a treat.
Moving towards adulthood, Erich felt like he was “playing pretend.” His therapy taught him the technique of “Masking” which is wearing the appropriate mask or behavior for each social situation you go into. Therapy made him feel like he needed to adapt, he needed to act a certain way, he needed to wear a mask to fit into normal society. Erich felt his therapy did not allow him to be himself.
Driven To Succeed
After getting a communication degree in college, Erich did a complete behavior shift and got into broadcasting. He got a radio internship where he was eventually able to open up. He was in a place where he was thought of as unique, one of the “creative types.” Over time he also developed what his wife calls “motivated by spite” – if someone told Erich he could not do something, he purposely would turn that around and figure out a way to do it – and then do it!
Erich now has a fantastic life he has worked hard for. He has been married for almost 10 years to a wonderful women who understands his neurodiversity, his needs and supports him in every way possible. Erich has a full-time job with Work Community Independence, also works as an IT person for Boston Managed IT and even created his own company, Rabid Badger Studios. He feels a huge sense of freedom that he is now able to be very flexible, to make his own schedule each day depending on his needs.
Advocate For Yourself
Annette and Erich also speak about the importance of advocating for yourself If you are able to. Make sure you are able to say what you want, what is important to you, have your voice heard. Erich also feels that people should ask questions of a disabled person, don’t automatically assume that what works for some with that disability, will work for all. Erich says “there’s as many opinions as there are neurodiverse people.”
Erich’s Closing Advice
Erich’s advice to other kids growing up neurodiverse – it gets better – “with knowledge and understanding, comes a level of comfort.” His advice to parents– listen to your child, listen to what motivates them, listen to what they feel, what they want. Your child wants to be heard, ask them questions. “Nothing about us, without us.” Let your child have a voice.
For information on other topics, please also check out Special Needs Companies. For legal advice, inspiration, and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about - Contact Us!
Please Leave a Podcast Review
As Annette mentioned in the intro, please consider leaving a podcast review for Parenting Impossible – The Special Needs Survival Podcast on iTunes. More positive ratings and reviews mean more new listeners are introduced to this informational and inspirational podcast. Look at the bottom of this page for the purple oval that says “Enjoying the podcast? Leave an iTunes review here.” This will take you over to the iTunes site/app where you will be able to login and leave a review. We really appreciate it!
You can also join our free Facebook group for the disability community, the “Circle of Care,” or watch the webinars and other speaking events on YouTube. The purpose of this community is to create a space for people to be themselves, ask questions and get support and answers, so please share these resources with your friends!
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
Being stopped by or questioned by the police can be stressful for anyone but for those who are mentally ill or developmentally disabled, it can be quite traumatic. Often these traumatic situations can trigger certain responses in a mentally disabled individual which can escalate into violence or other extreme matters, causing them to be unfairly accused/charged or labeled due to their illness or disability.
In this podcast episode, Annette speaks with Attorney Jason Chan, a criminal law attorney and partner in the firm Seed, Chan and Associates in Boston, about how individuals who are mentally ill and developmentally disabled are often treated and charged unfairly within the criminal justice system.
The main problem area Attorney Chan notes is usually with law enforcement or first responders as they generally have the first contact with the disabled individual. There seems to be a lack of training and understanding for first responders as they don’t have specific mental disability instruction. First responders are often only given very basic information about the situation they are heading into and are generally not aware of how to recognize danger zones and triggers for certain mental illnesses and disabilities. This can at times lead to very dangerous situations. Training is highly needed for first responders but unfortunately there in no universal training course or guidelines. Difficulties also lie around who would be capable of instructing a training course and with so many different kinds of mental illness and disabilities, how can you train a first responder to recognize all the signs and the care needed for each.
Restraining orders can cause issues as well. Some individuals that have mental illness or developmental disabilities don’t understand or deal with certain social situations well and can be misunderstood by roommates, those they work with or even romantic partners. Restraining orders can be devasting to a mentally disabled individual. It does not necessarily mean they did something criminally wrong, but now that there is a restraining order tied to their name, it can preclude them from certain disability programs and housing situations once a background check is run.
Traffic stops can also lead to stressful situations where a mentally disabled person could panic and either want to flee the scene to the safety of their home or they may want to get out of the vehicle to speak with the police officer. These types of reactions can escalate an already stressful situation with law enforcement. Attorney Chan recommends that parents and/or caregivers coach their children ahead of time, in the event they are pulled over by law enforcement at some point. Make sure the mentally disabled individual understands that police are there to help and likely there is nothing they have really done wrong.
Another situation that can lead to issues lies with college age students. Generally, around the age of 17 or 18 is when and individual’s mental health issues may arise, and they may have their first psychotic break. The stress of being away from home, a new state, a new environment, the pressure and demands of school work and maintaining grades can cause anxiety overload. They may feel they are isolated, have no family support and may withdraw from everyone and everything. The individual may eventually end up in the hospital but as they are now over 18 and are considered adults, parents are not notified and are not able to make any legal decisions for them. Attorney Chan recommends parents complete some estate planning documents before their child leaves for college including a Power of Attorney and a Health Care Proxy. Once a child turns 18, they are considered an “adult” and parents no longer have any authority over them or can make decisions for them if they are deemed incompetent.
As a closing note, Attorney Chan recommends that parents and caregivers pass along their knowledge to others. Make sure their mentally ill or developmentally disabled child is known in the community and others know what that child’s triggers may be. Attorney Chan also recommends advocating with elected officials for training programs for better understanding of those with mental health issues and developmental disabilities. Knowledge and training may help diffuse a situation before it becomes a larger issue.
If you would like to follow or reach out to Attorney Chan, you may find him at Seed, Chan and Associates and on Twitter, Facebook, and Instagram. Attorney Chan also hosts his own legal podcast which can be found HERE
For information on other topics, please also check out Special Needs Companies. For legal advice, inspiration, and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about - Contact Us!
You can also join our free Facebook group for the disability community, the “Circle of Care,” or watch the webinars and other speaking events on YouTube. The purpose of this community is to create a space for people to be themselves, ask questions and get support and answers, so please share these resources with your friends!
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
Planning a future can be challenging. Most people plan their future one step at a time, planning forward, toward their dream or goal. The PATH Process , “Planning Alternative Tomorrows with Hope”, is a creative planning tool that actually starts with the dream or end goal in mind, and you plan the action steps backwards from that dream.
In this episode, Annette speaks with Teri Steinberg , a disability consultant and mom, about the PATH Process and how using this you can assist the individual and their support network, plan positive futures. Teri has been building PATH’s for over 16 years now, her first PATH being for her son.
When Teri’s son Bill was diagnosed with Autism over 20 years ago, she immediately quit her job and began to research everything about it. She began gathering as much information as she could from other parents, support groups, government meetings – anywhere she could find information related to Autism, treatments, services, etc. Teri created a huge information board, which she would share with other parents and support groups. Teri did not want to be a parent that wallowed in grief about her son’s diagnosis, but rather a parent of action that did everything she possibly could to assist him and other families in the similar situations.
Teri started meeting with a few parent support groups a few hours a week, offering them all the information she had gathered. She then began working with microboards, which featured a small circle of support people surrounding the disabled focus individual. Unfortunately, Teri felt they focused too much on things the individual would NOT be able to do. She wanted to speak about the individual’s strengths and abilities and what he was good at.
Teri was taught the PATH Process by David Wetherow, Jack Pearpoint and Lynda Kahn. PATH is a specific tool that allows you to bring together the disabled individual and the support group of people that know and love him. Everyone sits and discuss the individual’s strengths and everything he can do and is good at, rather than focusing on the negative side and what he is not good at. The individual’s ideal future dream life is discussed, and then working backwards, the action steps are created to implement a positive life working towards that dream. Everyone in the support group is then enlisted to assist in some part of the individual’s PATH.
It is important to note also that people with intellectual and developmental disabilities can participate in their life at every level. They should be included in all decisions regarding their life. It is important to teach them from childhood how to support themselves, how to do things on their own, let them make their own choices and honor those choices. This builds a child’s self-esteem and allows them to be present in their life.
Teri’s closing tip is for parents and disabled individuals to become more active and present with government. Make your presence known with legislators and make it known you are a voter and would like to assist with anything disability related. You have to be physically present, be seen, to bring awareness to disabilities. Contact your local The Arc chapter and they can help you find legislators in your area. If you are interested in learning more about Teri, please contact her through Facebook or reach out to us at Special Needs Companies.
For information on other topics, please also check out Special Needs Companies. For legal advice, inspiration, and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about - Contact Us!
You can also join our free Facebook group for the disability community, the “Circle of Care,” or watch the webinars and other speaking events on YouTube. The purpose of this community is to create a space for people to be themselves, ask questions and get support and answers, so please share these resources with your friends!
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
In this episode, Annette speaks with Christa Couture, an award-winning recording artist, author, and broadcaster from Toronto, Canada. Christa, who is also disabled, wrote the book "How to Lose Everything" which is a story of the grief and loss she has suffered in her life. Christa has also recorded a Walrus Talks (the Canadian Ted Talks) called "Living Better" where she speaks about accepting your life as different rather than better.
Christa has known her fair share of grief and loss. At 11 she was diagnosed with bone cancer which was cured by the amputation of her left leg above the knee. Christa had 2 infant sons who tragically passed away followed by divorce and then a thyroid cancer diagnosis which threatened her speaking and singing careers. Christa finds that people don’t always want to speak about grief and loss, they are uncomfortable with sorrow. Most seem to want to fix things quickly and just say, “Things will get better”. Christa wrote the book “How to Lose Everything” to connect with those that are struggling with their grief, to hopefully allow them to feel less alone. She also hopes the book will find those who may not be experiencing loss at this time but will allow them to understand and have compassion for someone they may know who is grieving.
Christa, who has been an amputee since the age of 13, wears a prosthetic leg. For many years she kept her leg covered, not keeping it secret just not comfortable with it. A few years ago, she received a new prosthesis and was feeling good about it and wanted to celebrate it. Christa had seen a beautiful prosthesis that had been hand painted with flowers and was determined to create one for herself. Her “flower leg” was then created laminating floral upholstery fabric to her prosthetic leg. Her prosthesis became a “celebration of her loss”, as this now beautiful thing that she was proud of and wanted to show people. The conversations about her leg also changed from what happened to you, to - wow that is beautiful, where did you get that, your leg is so cool – her leg became a huge confidence booster.
Christa also discusses her view of her disability. As an amputee, Christa considers herself a disabled person due to the loss of a limb that she had been born with, whereas a person that was born without the limb may see themselves as limb different and not disabled. There can be resistance for some to label themselves as disabled as the word “disabled” tends be thought of by most in a negative way. Christa often does not feel her disability until she encounters things that affect it and show her she does have limitations.
Christa is currently working on a second book which will be focused more on disability. She also received a grant and is producing a series of short, animated films based on her “How to Lose Everything” book. Each film will be a different story of loss. If you would like to check out Christa’s music, click here. Christa can also be found on Instagram, Facebook and Twitter.
For information on other topics, please also check out Special Needs Companies. For legal advice, inspiration, and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about - Contact Us!
You can also join our free Facebook group for the disability community, the “Circle of Care,” or watch the webinars and other speaking events on YouTube. The purpose of this community is to create a space for people to be themselves, ask questions and get support and answers, so please share these resources with your friends!
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
June celebrates LGBTQ+ Pride month each year to honor the 1969 Stonewall Uprising. Pride Month is a time to recognize the issues, challenges, and discrimination the LGBTQ+ community has faced and to celebrate the triumphs. In this podcast episode, Annette speaks with Ivylee Martinez and her adult child El Martinez, regarding gender identity issues.
El Martinez identifies with the pronouns They/Them/Their and at just 19 years old, boasts an impressive activism resume. El begins by discussing that they had always known something was off with their gender. In their freshman year of high school, El joined the GSA – Gender and Sexuality Alliance and met LGBTQ+ and trans people which got them thinking about their own gender identity. El also gives us a breakdown of the various definitions for those not familiar:
(Biological) Sex – assigned to a child at birth, most often based on external anatomy.
Gender Identity – the term(s) someone uses to define their gender, ex: male, non-binary, woman, fluid.
Gender expression – the manifestation of someone’s gender through their appearance.
Transgender – a term used to describe someone who does not identify with the label/biological sex they were assigned at birth.
Cisgender – a term used to describe someone who identifies with the label they were assigned at birth.
El goes over the use of pronouns (He/She/They) and how it can be difficult and challenging for friends, family, teachers, and acquaintances to get pronouns correct. El mentions the best thing to do if you make a mistake on someone’s pronoun is just to fix the mistake and move on with the conversation. Too many apologies may begin to alienate the transgender person and make them upset or uncomfortable.
Annette and El also discuss how those in the disabled community, mainly neurodivergent and autistic, are more likely to be transgender. Some autistic individuals center their gender identity around their autism and have been key in pushing forward gender acceptance. They also discuss the transgender fear of the healthcare system and the trauma that can occur when they are assigned the wrong gender by their doctors. They feel that sometimes transgender people avoid the treatment they need due to fear of having to explain or correct their gender to their doctor.
El was forced to become their own advocate and activist due to their school system and their lack of support for El. El was harassed throughout their time in high school and felt the school did not do enough research to support them and other LGBTQ+ people. El ran for GSA president, won, and served as the GSA president their sophomore through senior year. While president, El developed mentorship roles with other students to develop their self-confidence and to let students know it is ok to be themselves.
El also sponsored the Gender X Bill in Massachusetts which allows people to select “X” as their gender if they do not feel they identify with male or female. El identifies as nonbinary and when they realized male or female were the only two choices available when applying for a Massachusetts driver’s license, they decided to do something about it. El wrote a letter to Massachusetts Senator Karen Spilka and received a call from her the very next day wanting to support El in their Gender X effort.
El would like to leave us with their advice to youth and parents. To youths, El says “you’re perfect just the way you are, it’s ok to explore, it’s ok to change how you identify”. To parents, El says to have patience. Kids may not have the answers to the questions you are asking. Kids are still learning about themselves and to just listen to them and their needs and accept them as they are. If you or someone you know does need assistance, please check out your local GSA and/or local LGBTQ+ center or group. You can also contact the GLSEN and the Transgender Law Center.
For information on other topics, please also check out Special Needs Companies. For legal advice, inspiration, and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about - Contact Us!
You can also join our free Facebook community for the disability community, the “Circle of Care,” or watch the webinars and other speaking events on YouTube. The purpose of this community is to create a space for people to be themselves, ask questions and get support and answers, so please share these resources with your friends!
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
Resilience is the ability to withstand or recover quickly from difficult challenges. Many special needs parents may struggle with this throughout their child’s journey. The many challenges and difficulties with everyday life, doctors, and getting the proper supports they need can be overwhelming. In this episode, Annette speaks with Dr. Marcia Nathai-Balkissoon, who goes by Marcia NB. Marcia NB has a PhD in industrial engineering and is the author of the new book “Lighting the Path: Leaning into a Hopeful Future as a Special Needs Parent” . Marcia NB quickly faced her challenges with her own daughter Emma and became an advocate to help other families work through their own challenges.
Marcia NB’s daughter Emma was born in 2012 with heart issues and as the result of a heart surgery mistake, became severely brain damaged at only 8 months old. While at a rehabilitation facility with Emma, Marcia NB saw many special needs children and families. After a conversation with one mother that knew nothing about her own son’s disability, Marcia NB decided she needed to advocate for other families that were not getting the information they needed regarding their own children. Marcia NB became a Parent Skills Master Trainer through the World Health Organization and Autism Speaks.
Marcia NB also has a YouTube Channel called The Changemaker Series where she interviews people who are making a difference just by being themselves. Marcia NB also features her own talks where she hopes to help people step out of their “overwhelm” state and start taking back joy and fulfillment.
Marcia NB says, “We all have to come to our own understanding and create our own meaning out of what we are going through as special needs parents.” To release her own personal tension and stress, Marcia NB wrote. Marcia NB says the name of the book “Lighting the Path” came to be due to her feeling she was in darkness when the accident happened to Emma. Marcia NB felt she needed to know this darkness, to become resilient and to help others in similar situations through their own darkness. Lighting the Path’s final chapter “Celebrating Your Resilience” offers the wish that her experiences may help those walk their own path and achieve clarity and support through all their own challenges.
For information on other topics, please also check out Special Needs Companies. For legal advice, inspiration and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about - Contact Us!
You can also join our free Facebook community for the disability community, the “Circle of Care,” or watch the webinars and other speaking events on YouTube. The purpose of this community is to create a space for people to be themselves, ask questions and get support and answers, so please share these resources with your friends!
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
Adult ADHD or Attention -Deficit/Hyperactivity Disorder is a neurodevelopmental disorder where a person has difficulty concentrating, is hyperactive or restless and displays impulsive behaviors. This previously recorded podcast is one of our favorites and offers some effective ways to manage Adult ADHD.
In this episode, Annette has a conversation with David Greenwood, author of the book, Overcoming Distractions-Thriving with Adult ADHD. The book profiles many entrepreneurs around the country who have ADHD and have created successful businesses.
Annette and Dave talk about how in some cases, a parent of a child can get frustrated and even lose hope when they have to work around or deal with challenging behaviors. And by reading the book that Dave wrote, they can begin to understand that there can be a successful person under all those ADHD challenges.
Annette and Dave also take time out to chat about some of the funnier aspects of having adult ADHD such as forgetfulness and being time blind. While these can get in the way of running a successful business, sometimes we just have to have a little laugh at our own expense.
Annette and Dave talk about some of the more effective ways in which successful adults with ADHD manage and thrive such as regular exercise, proper sleep, nutrition, and the topic of meditation. They chat about managing your time and your environment and best practices about managing procrastination and productivity.
And they chat about the positive aspects of having ADHD such as creativity, risk-taking, energy and having an entrepreneurial mindset.
Learn more about Dave Greenwood, his book and the popular podcast by the same name at: Overcoming Distractions
For more information on this and other topics, please also check out Special Needs Companies. For legal advice, inspiration and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about - Contact Us!
You can also join our free Facebook community for the disability community, the “Circle of Care,” or watch the webinars and other speaking events on YouTube. We are also on Facebook, Twitter, and LinkedIn. The purpose of this community is to create a space for people to be themselves, ask questions and get support and answers, so please share these resources with your friends!
Communication is key, and being able to communicate with your loved ones and friends when they may not be able to use their voice can create challenges. We wanted to release this extremely helpful, previously recorded podcast again to remind listeners there are alternate ways to communicate other than just speech and voice.
In this episode of Parenting Impossible, Host Annette Hines speaks with special needs mother and inventor Randi Sargent. Randi created the website SayitwithSymbols.com, the only source dedicated to taking the guesswork out of caring for adults with cognitive/communication challenges by offering easy-to-use, picture-based communication aids designed specifically for adult caregiving.
Randi was inspired to start Say It With Symbols after the birth of her son who was born with severe communication and intellectual disabilities. Despite years of specialized programs, Randi’s son never developed the ability to speak, read, write, or walk independently. Through her own experience, she realized there was a need for communication devices geared towards adults.
In 2008, Randi created a line of products designed for adults that are based on best practices supported by academic research. Her communication devices can be used by anyone from adults with disabilities to people who have lost their ability to speak after a medical event such as a stroke. Randi’s products have been field-tested and improved by caregivers striving to communicate with their loved ones who cannot speak.
Annette and Randi also discuss the importance of making sure people have the ability to communicate using tools like Talking Mats and the need for more transition tools for non-verbal adults.
The negative impacts of the pandemic have been talked about over and over for the past year. Let’s talk about the positives, the good things that the pandemic has brought us. In this episode Annette discusses the three positive lessons she has learned from the pandemic, the three positive changes that have happened: 1 – Observation, 2 – Collaboration, and 3 – Innovation.
Annette starts off the episode with a mini review as to what this podcast is all about, why she created it. Annette says, “I started this podcast as a way to connect and bring information to the community.” Years ago, as a single parent raising 2 daughters, Annette faced many challenges and struggles. Her daughter Elizabeth, who would have been 25 years old May 31, was profoundly disabled due to mitochondrial disease. Annette found it hard to get the supports needed as well as information as the internet back then was not what it is today.
Elizabeth passed away 7 and a half years ago and Annette felt she needed to do more. She wanted to help the community get even more information, to help other parents, families, and disabled individuals. She wrote a book about her experiences raising her daughter Elizabeth Butterflies and Second Chances: A Mom's Memoir of Love and Loss, she blogged, she wrote articles for various publications and then the podcast was born. The podcast has become a tool to bring even more information to everyone all over the world.
Annette then discusses the three positive lessons learned from the pandemic. Number one is “OBSERVATION”. Through the magic of Zoom, the window to the world, we have been able to observe classroom learning and exercises in both school and adult services and programs. This has allowed us to view where things are going well and not so well as well as the response level of our loved one to the programs and classes.
Lesson number two is “COLLABORATION”. We now have access to teachers, administrators, directors and staff for schools and programs, everyone that is working with and caring for our loved ones. We have the opportunity to be an equal member of our loved one’s “team” and work with them one on one.
Lesson number three is “INNOVATION”. We have grown tired of the same old services that have been offered for so many years. We have now seen so many exciting things happen and so many new processes that were created and are working. We don’t have to go back to the same old way we were doing things. Annette wants to give everyone a little seed of encouragement, “think creatively and get together with the other stakeholders in your communities”. Go over the data collected in your observation and collaborations. Take a look at rebuilding adult programs and school programs. They do not have to go back to the way they were.
For information on other topics, please also check out Special Needs Companies. For legal advice, inspiration and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about - Contact Us!
You can also join our free Facebook community for the disability community, the “Circle of Care,” or watch the webinars and other speaking events on YouTube. The purpose of this community is to create a space for people to be themselves, ask questions and get support and answers, so please share these resources with your friends!
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
Dyslexia is a common disorder that challenges your ability to read, spell, write and speak. This neurological disorder is of particular interest to Annette as she discovered as an adult that she was dyslexic. In this podcast episode, Annette speaks with author Elizabeth Trudeau about her daughter’s journey with dyslexia which inspired her new book “Brilliantly Dyslexic”.
Elizabeth’s daughter was diagnosed with dyslexia as a very young age leading to many learning challenges as she began school. Elizabeth says, most children with dyslexia are “just as smart as their peers, and they just struggle with processing language.”
The idea for the book Brilliantly Dyslexic came from a car ride home from school one day when her daughter proclaimed, “I’m just stupid”. This of course broke Elizabeth’s heart. She responded with no you are not stupid, you are dyslexic and there are amazing people out there who are dyslexic - artists, inventors, people who have done amazing things.
Inspired to find these amazing people with dyslexia, Elizabeth researched and created a binder of stories just for her daughter. This project eventually became the book Brilliantly Dyslexic. As the book’s website states, “These diverse stories encourage kids to dream big, play to their strengths, and never let challenges define them.”
Elizabeth leaves us with a few tips for your dyslexic child or any child for that matter. Make sure you see your child and really believe in them. Find your child’s strengths and support them as much as you can. Allow them to find something they are good at, allow your child to find and build their own story, to surmount their challenges and find their own version of success.
You can follow Brilliantly Dyslexic on Facebook, Twitter, and Instagram and keep an eye out on the Brilliantly Dyslexic website for the book pre-order which should go live in a few weeks.
Annette LOVES all the questions she gets because she LOVES doing these question and answer podcasts. Making sure the disabled community has access to all the information they need is key to Annette. This is one reason why in addition to being a successful attorney, Annette is a podcast host, speaker, author and blogger.
As an attorney, Annette does have an ethical responsibility though to not engage in a client /attorney relationship with someone who is not a client. Since each case is vastly different, she is not able to give legal advice on a personal level. These question and answer sessions allow her to give general information on a specific topic. In this episode Annette discusses Foster Care and Social Security payments, putting Real Estate in a Special Needs Trust and Stimulus Payments regarding Social Security and Medicaid.
The first topic covered is the foster care system and Social Security payments. 10% of children in foster care are entitled to Social Security benefits but it has been discovered that they are not being told about this. The foster care agencies are collecting these payments and are supposedly using the money towards the child’s care at the facility. NPR did a great investigations article about this just recently which you can read here. Do you feel this is right of the government to decide who gets to be the representative payee of a foster child that is entitled to Social Security benefits? Please Contact Us and tell us your thoughts.
Annette next goes into some estate planning decisions – should you put your house into your Special Needs Trust? This often comes up as you will want to make sure your disabled child or sibling has somewhere to live once you are no longer around to take care of them. But what if you have multiple beneficiaries? Can you leave either half or one-third of a house in a trust? Will this cause too many challenges or be unfair for a trustee and/or beneficiaries?
Annette’s final topic of the podcast revolves around stimulus payments or economic impact payments. How does Social Security and Medicaid view these payments in regards to a person that collects their benefits? Are the stimulus payments considered income or part of the $2,000 asset limit? Also, what if you received a stimulus payment but you passed away? Does this money need to be given back to the government or can it remain with your estate?
For more information on these and other topics, please also check out Special Needs Companies. For legal advice, inspiration and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about - Contact Us!
You can also join our free Facebook community for the disability community, the “Circle of Care,” or watch the webinars and other speaking events on YouTube. The purpose of this community is to create a space for people to be themselves, ask questions and get support and answers, so please share these resources with your friends!
Growing up deaf is a challenge, but what if you grew up deaf in a small area of India where there was no access to any disabled supports or facilities? What if there was almost no support for your education as a disabled student? Our guest this week is Tanisha Dayal , a young deaf woman and masters student. Tanisha, who now lives in Ireland, speaks to us about growing up disabled in India and her education challenges, as well as the disability challenges of traveling internationally.
Tanisha grew up in India in a time when cultural values were different. There was a stigma to being disabled as well as even just being a girl. Tanisha’s parents and younger brother were very supportive and fought for her right to study in the same school as everyone else. Unfortunately, she was the only deaf girl in school so often felt alienated. Teachers and students often seemed to forget about her needs due to her disability, making learning and making friends challenging. There were no special disability programs or accessibility options available to her.
In her late teen years, Tanisha felt she was rejected by both the hearing and the deaf communities. Deaf students were shocked that she did not know sign language and she was labeled “too disabled” by the hearing community. Tanisha often had to advocate for herself and navigate between both the deaf and hearing communities.
Tanisha has also done quite a bit of international travel which raised her awareness on the disability challenges of traveling. Not all aspects of travel are set up to assist disabled travelers. There were multiple supports for wheelchair and blind travelers but nothing for the deaf. Deaf travelers must be much more aware as their chance of missing flights due to not hearing boarding announcements is much higher. There are also language and accent challenges for those deaf travelers that read lips. Tanisha feels from her own experiences that the travel and hospitality industry needs to raise their accessibility levels for disabled travelers and offer more assistance and services.
Something Tanisha would love to see more of in the future is disability leadership – for example, a CEO of a large corporation who is disabled. She feels that disabled individuals are sometimes given limited opportunities in the corporate world. They are often only allowed limited resources and face challenging corporate environments. There also needs to be a more inclusive and diverse community in the corporate world for disabled individuals. Often Diversity, Equity and Inclusion (DEI) excludes the entire disabled community. This shows a lack of awareness for disabilities and a need for people to realize that disabled individuals need this support as well and need to be included in the fight for their rights.
Tanisha dedicates this podcast interview to her family – her mother, father and brother. Without the love and support they have given her, she believes she would not be who she is today. They gave her the strength, will power and determination to achieve everything she has so far in her life. Tanisha’s final note for everyone – Be Kind!
If you would like a PDF copy of the closed caption script of this interview, please contact us Special Needs Companies
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
Language is often something that is debated in the disability community – do we use the term “Disabled”, or do we use “Special Needs”? Should someone be shunned or shamed because they prefer to use one term over the other? Is there too much emphasis on the language and not enough focus on allyship and effecting change together as one group?
In this episode, Annette brings back mom and author Julie Falcone to discuss how to talk to a special needs family, the language debate of using the terms disabled versus special needs and allyship and how to invoke change.
Julie starts off the podcast with a few tips and highlights from her recently released book "DEAR LOVED ONES: An Honest Guide to Helping the Special Needs Family You Love". Julie humorously offers ways to respond to family members and friends that may mean well but often comment or offer “advice” that may come across as uncaring or hurtful.
The language debate is something that Annette has brought up in various podcasts and blogs in the past. Medium had a great article recently also on this topic called "An Open Letter to Parents Who Use the Term "Special Needs"" . Annette and Julie discuss their views using Disabled versus Special Needs within the community and how we use language as “labels”. Julie says, “I feel like there’s a lot of emphasis on the right and wrong way to say things, when in reality we’re all on the same page, we all want the same things.”
We also all want change within many disability areas including laws, regulations, and benefits, but we need to realize we are all stronger together rather than pushing ahead to effect change alone. If we can come together as a group, ally together, we can make changes happen. If there is a problem or an issue, don’t feel you have to handle it alone. Annette says, “Let’s get together and see what we can accomplish!” and leaves us with the question - what are you doing to effect change?
Let us know what you are up for, what you want, what you would love to do, what one thing you would love to change? Send us your comments or questions here at Special Needs Companies - let’s talk and ally together!
Annette would also love you to join her Circle of Care Facebook group. The Circle of Care group serves to bring together members of the special needs community – parents, siblings, caretakers, professionals, advocates etc, to share stories, ask questions and offer support. Every Wednesday at 6pm ET the group hosts a Facebook Live discussion with guest hosts speaking on various special needs topics. Please reach out to us if you would like to be a Circle of Care Guest Host or a Parenting Impossible Podcast Guest!
Most assistance offered to disabled children and adults is for the disabled individual. Not everyone may realize that their families may need assistance as well. Parents and siblings can suffer from anxiety, fear, stress, and a host of other issues related to their loved one’s disability.
In this episode, Annette speaks with Don Grothoff, a behavior transformation specialist, family coach and father of three about his personal experience dealing with “invisible disabilities” within his family and how they developed a program to help other families like theirs.
Invisible Disabilities are those disabilities and disorders that show no outward or physical signs though they can limit or challenge a person’s movements and/or senses. This can lead to misunderstandings and judgments from those that can’t immediately see a disability.
Don and his wife Gina, who is an occupational therapist, had a drastic change in their lives one night when one of their daughters abruptly displayed signs of sudden onset OCD (Obsessive Compulsive Disorder), an invisible disability. Their once happy, bubbly daughter suddenly became a fearful, highly anxious child at the flip of a switch. While she appeared physically fine on the outside, mentally she was distressed and suffering. They spent years researching the disorder, trying everything they could to get their daughter to a manageable point. Don and Gina’s own anxiety and depression levels became so high they almost divorced.
The turning point came after Don had a heart attack and realized he wanted to do something he was more passionate about and to help others in similar situations. He wanted to let other families know that they are not alone when dealing with loved ones with invisible disabilities. Don and Gina began Focused Healthy Family which developed programs to help the family as a whole, understand and communicate with each other. Don says, “our idea here is to be able to help other families that are going through that (anxiety)”. They want to be a resource for people to help guide them through their issues revolving around their disabled loved one.
Don also lists his three tips for dealing with anxiety and invisible disabilities:
1 – Pay attention to the whole family, parents and siblings can be suffering too
2 – Take care of yourself
3 – Ask for help if you need it
Don also has his own podcast (which Annette will be on this summer) called The Invisible Wheelchair where he discusses anxiety, OCD and other invisible disabilities.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
As adults, most of us generally understand what being anxious or having anxiety means and how it feels. Adults may understand what another adult, therapist or a doctor may tell them about anxiety, but what about your children? How do you tell your children about anxiety in a way that they will understand?
Summer Batte, an author, magazine editor and mother, faced her own challenges with this for many years. Summer’s daughter displayed signs of anxiety early on. As a parent you realize that while professionals are great, they don’t live with your children on a daily basis. They don’t see or speak to or have to work through the daily changes in a child’s behavior. Parents need to become the expert – the professional so to speak.
Summer spent time through the years researching and compiling every bit of information she could on anxiety and how she could help her child. This research and witnessing as a parent how adults spoke to her child about anxiety, led her to write her own book "Name and Tame Your Anxiety".
“Name and Tame Your Anxiety” is written in a language for kids. It details how parents can speak to their children about anxiety. How parents can let their children know there is nothing wrong with them for feeling the way they do – but on the child’s level, not using only medical terms and clinical language.
Part one of “Name and Tame Your Anxiety” discusses “Understanding Anxiety”, what it is, what causes it and the types of anxiety a child may have. Part two, “Taming Anxiety” discusses how to not let your anxiety take over. This section also explains therapy and what a child may expect in a therapy session as well as medication and what can be expected if medication prescribed. Part three discusses “Talking About Anxiety” and how you can help your child self-advocate for themselves as they grow into an adult.
In this podcast episode, you will hear Summer and Annette discuss the book “Name and Tame Your Anxiety” and how it came to be as well as the best tips to help your child with anxiety.
Order your copy of the book “Name and Tame Your Anxiety” HERE
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
The questions have been piling up in Host Annette Hines’ inbox so it is time to do a Q&A session. Making sure the disabled community has access to all the information they need is key to Annette. This is one reason why in addition to being a successful attorney, Annette is a podcast host, speaker, author and blogger.
As an attorney, Annette does have an ethical responsibility though to not engage in a client /attorney relationship with someone who is not a client. Since each case is vastly different, she is not able to give legal advice on a personal level. These question and answer sessions allow her to give general information on a specific topic. In this episode Annette discusses Social Security, Transitions and Supported Decision Making.
The first topic covered is Social Security and how your payments can be impacted by work. Annette discusses SSI and SSDI, and how they are impacted differently by work income. Annette also discusses how you can use supports for work as well as how to possibly avoid getting kicked out of program eligibility. If you are looking for additional information, the Social Security website is a great resource.
Annette next goes into the topic of transitioning a young person with a disability into their next program. Covid created a huge problem last year when all programs went to a virtual format. Annette discusses how find and get a sense of a program and how it may work for your child when you are unable to visit the program in person.
Annette’s final topic of the podcast is Supported Decision Making, which is very timely due to the state of Massachusetts recently reintroducing a statute regarding this. Annette discusses “Dignity of Risk” and how a disabled person may be able to use a Supported Decision Making agreement to retain his/her legal rights.
For more information on these and other topics, please also check out Special Needs Companies . For legal advice, inspiration and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here.
You can also join our free Facebook community for the disability community, the “Circle of Care,” or watch the webinars and other speaking events on YouTube. The purpose of this community is to create a space for people to be themselves, ask questions and get support and answers, so please share these resources with your friends!
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
Let’s talk “The Arts” – specifically movies. Rachael & Laura Doukas, sisters, are the founders and producers of Doukas Pictures. They began their entertainment industry careers acting but soon graduated to writing and producing short films. The Ryan Express, their feature debut screenplay, advanced to the second round of Austin Film Festival’s Script Competition, a distinction only achieved by less than 20% of nearly 14,000 submissions. The Ryan Express is based on their short, “Rocket Man,” which was nominated for Best Short Film, Best Screenplay and won Best Ensemble.
The Ryan Express tells the story of an autistic 6th grader named Robby who builds a time machine out of cardboard and scraps to go back and fix his biggest mistake – the day he was kicked off the baseball team. This film illustrates the true magic that autistic children bring to this world.
The Doukas sisters have also partnered with the Best Buddies organization on The Ryan Express, and have made a commitment to the disabled community to hire 10% of their cast and crew to be those with developmental disabilities. If you are interested in participating in the film, please reach out to them Get Involved
To hear Rachael, Laura and Annette discuss “The Ryan Express”, inclusion, community support and understanding and how “Art” can be used to bring a message forward and to change the way the world views those with developmental disabilities, listen to the full podcast episode here.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
So many of us moms and caretakers of children with disabilities can find ourselves all too easily slipping into seasons of unhappiness, bitterness, self-doubt, self-hatred, and lack of motivation.
Annette met virtually with Jenny Sanders, founder of iLovekickboxing in Agoura Hills, CA (recently shut down due to COVID-19) to discuss the importance of exercise and endorphins in preventing and fighting off depression.
When Jenny’s son was diagnosed with autism in 2014, she found herself in a state of denial that quickly led to full-on depression. With no motivation to eat well, get active, or pursue her own hobbies, Jenny was completely out of shape, lethargic, and unhappy.
In this mini-sode, Jenny shares her story of working through her depression with exercise and finding a new source of motivation to take actionable steps towards happiness. This is her story of transforming from dark skies and no hope, to a happy, proud, and successful mom, wife, friend, and individual.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
Joya Van Der Laan is a wife, mother of 3, family nurse practitioner, functional medicine specialist, and business owner. As if that didn't make life complicated enough, two of her three children have special needs including Autism Spectrum Disorder (ASD), Attention-Deficit Hyperactivity Disorder (ADHD), and Intermittent Explosive Disorder (IED).
After receiving her daughter's ASD diagnosis in 2014 when she was 3 years old, Joya's innate curiosity and passion for learning drove her to ask, "am I doing enough to help my children through these diagnoses?"
Feeling woefully unprepared, even with her medical training and clinical background, Joya started researching treatments including both traditional and integrative options. It was overwhelming, eye-opening, hopeful, and exhausting all at the same time. "I very clearly remember feeling like I was in over my head, even as a trained medical professional,” Joya says. “Even with experience with integrative medicine, I wondered, 'how in the world must parents who have no medical background feel going through this?'"
This is what prompted Joya and her husband, Dave, to start Your Autism Game Plan, an online resource for parents and caregivers of children with ASD. Her goal is to provide a different perspective, including the integrative treatment options that are not generally discussed in the traditional medical and therapy settings.
"Parents need to know this stuff because our kids need help beyond what is typically offered, and searching online is just too overwhelming and time-consuming," Joya says.
In this episode, Annette and Joya discuss a variety of topics, including:
- How we as parents can help our kids with autism to decrease the bothersome symptoms with functional medicine treatments
- Gut health and how it can be related to so many health issues and symptoms of autism – meltdowns, constipation, diarrhea, stimming, picky eating, mood disorders, etc.
- How to give yourself grace when you feel like a bad mother/parent
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
In this podcast episode, we cover a topic that’s a little “different” from what we usually discuss.
Annette invites award-winning male vocalist and author of the children’s book “Made by Raffi,” Craig Pomranz, to share his story and explain why it’s important to not only accept each others’ differences, but to celebrate them.
Craig’s book tells the story of a shy little boy named Raffi who is often left out and bullied for being seen as “girly” due to his love of knitting. It’s not until Raffi’s knitted creation saves the day at his school’s pageant that people learn to appreciate his craft and all of the differences that make him, well, him.
This message of celebration is important for all of us, but it holds a significant impact for the disability community. A recent study from Cambridge University examined over 641,000 people and confirmed an overlap between gender diversity and autism. According to the data, individuals with autism are more likely to be gender diverse, and gender diverse people are more likely to have traits of autism than cisgender individuals.
In this day and age, it is more important than ever to celebrate individuality and allow people to be who they are.
This episode also features Craig’s song, “Different,” which lyrically explores the beauty of being unique from each other. This work is as beautiful in music as it is in message.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community
This week, we are celebrating the 100th episode of our “Parenting Impossible” podcast!
To kick off this special episode, we listen to a song by Craig Pomranz called “Different,” which he wrote to inspire children and adults everywhere to celebrate their differences rather than try to hide them.
After the song, Annette dives into her discussion with 3 incredible guests — Joslynn Jones McLaughlin, Laura Weisgarber, and Megan Fabrizi — as they share their stories of raising children with a rare disease called Spinal Muscular Atrophy (SMA).
Annette is familiar with the complex emotions and challenges of raising a child with a rare disease, as her oldest daughter, Elizabeth, passed away from Mitochondrial Disease in 2013.
These moms share their stories of receiving their childrens’ diagnoses, grieving their own dreams and expectations, working through mom-guilt, battling mental health issues, celebrating the “small” victories, trying different treatments, and learning how to navigate life during COVID-19.
At the end of the episode, Joslynn, Laura, and Megan each share words of wisdom that they have found to be true along their own journeys, as well as the importance of sharing stories with other members of the disability and rare disease communities.
Find more information about the SMA treatments referenced in this podcast here:
- Spinraza
- Evrysdi
- Zolgensma
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
To kick off the first podcast episode of Developmental Disabilities Awareness Month, Annette is joined by Elizabeth Wright, the Editor of Disability Review Magazine and the Founder and Editor of the “Conscious Being: For Disabled Women by Disabled Women” blog, to discuss timely topics like ableism, how nondisabled individuals can partner with the disability community, “inspiration porn,” and more.
Elizabeth starts the podcast by sharing her personal story of being born limb different. Encouraged and inspired by her parents’ passion for disability advocacy, she learned from a young age not to take “no” for an answer when it came to what she could or couldn’t do.
She used this go-getter spirit to start training for the Paralympic Games when she was 13, eventually swimming in the 1996 games in Atlanta. By the time she reached her young 20s, Elizabeth was attending university to study fine art. She focused her studies on learning about the visual representation of disabled women and how she and others really saw her body and the ways she interacts with the world.
Elizabeth eventually moved to the UK and started speaking publicly about the Paralympic Games and participating in sports with disabilities. Now, she consults companies and schools on disability activism, as well as the ways nondisabled people can be better disability allies and work to dismantle ableism.
“Nondisabled parents and siblings may not understand the lived experience of what we go through, but they are the next closest people to understanding what life is like for us,” Elizabeth says. “I think we have the opportunity to work together to make the world more inclusive and more equitable.”
To hear Elizabeth and Annette dive into these hot topics in the disability community, listen to the full podcast episode here.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
In the final week of our “Month of Love” series, Annette invited two special guests to discuss the importance of seeking healing for all family members, not just the neurodiverse child.
Matthew and Carol Newell are the Founders of the Family Hope Center in Greater Philadelphia and authors of “Healing Your Child’s Brain: A Proven Approach to Helping Your Child Thrive.”
Since 1981, the Newell’s have worked both separately and together to help thousands of children with developmental disabilities and their parents through a neurological-based therapy program. After years of building their expertise in this field, Matthew and Carol got married and eventually had children of their own, a few of which have developmental and neurological difficulties.
They were able to apply the knowledge they had gained during their clinical work and careers to help their own children overcome their respective challenges. The couple admits that the results didn’t happen overnight, though — it took years of learning, dedication, patience, love, and continued faith in the brain’s ability to heal.
“If love could ‘fix’ your kid, they’d be done already — love needs an action plan,” Matthew says. “We developed a plan that would help heal your kid without making it their problem and one that we could measure every day; one that brings healing to the entire family.”
Matthew and Carol explain the importance of creating an environment that brings healing to both the child and the family as a whole. They discuss practical questions we as parents and caregivers should be asking ourselves to ensure our lives are balanced and we are able to be the best versions of ourselves for our health and our children.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
For week 3 of our “Month of Love” series, Annette is joined by Dr. Vivien Brown, MDCM, CCFP, FCFP, NCMP to discuss the importance of self-love when it comes to healthy aging for women.
Annette starts the podcast by admitting that she used to feel pride in putting herself last -- working her fingers to the bone and going to bed absolutely exhausted every night. However, she has realized that this isn’t what she wants to model for the people in her life -- for her daughter Caroline, her peers, her community, etc. Instead, she wants to model how to be healthy while also getting things done in a sensitive and balanced way.
Dr. Vivien Brown, family physician and author of “The New Woman’s Guide To Healthy Aging: 8 Proven Ways to Keep You Vibrant, Happy & Strong,” joins the podcast to discuss some practical ways we can make strides towards a healthier lifestyle.
She walks listeners through the importance of sleep, exercise, diet, heart and brain health, etc. As special needs parents and caregivers, it is more important than ever for us to be mindful of how we take care of ourselves in these ways.
“Data and science are very important, but if you don’t know why you’re doing something, it’s hard to follow through with different programs and regimens,” says Dr. Brown. “I want women to feel empowered and for them to understand the issues so it becomes easier to make follow up on healthy choices.”
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
There are ups and downs in every marriage. Whether it’s stress from work, not enough time for fun, parenting disagreements, poor communication, moody bickering, grieving a loss, or bigger problems like infidelity, there is no such thing as a “perfect” marriage.
However, parents and caregivers of children with disabilities have a unique set of challenges in many arenas, not excluding their love lives.
In this episode of our Parenting Impossible podcast, Annette Hines is joined by her favorite podcast guest, her husband and law partner Mark Worthington.
Through raising and losing a special needs child together, trying out couples’ counseling, starting new businesses, becoming empty nesters, raising a puppy, and everything in between, Annette and Mark have learned quite a lot over the years about their relationship dynamic and how to love each other well in the midst of all of life’s craziness.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
Annette kicks off the first episode in the “month of love” by inviting speaker, coach, and host of the Very Happy Stories podcast, Liza Blas, to discuss a type of love that so many parents of special needs children push to the side — self love.
Liza opens the episode by telling a story of when she and her daughter, Ava, who has battled anxiety, depression, hallucinations, Lyme disease, and more, went to see a therapist together. During this session, the therapist asked Ava what would make her happy. Much to Liza’s surprise, Ava simply responded “I would be happy if my mom was happy.” It was only then that Liza realized that her daughter was right — she wasn’t actually happy herself.
This incident was a starting point for Liza in realizing that for over a decade, she had told herself and other people the lie that ”all I need to be happy is for my kids to be happy.”
In that moment, she realized how much pressure she had been putting on her children to be happy. Her daughter and son couldn’t help that they were both battling mental illnesses, and yet they knew that their mother’s happiness depended on their own.
Liza shares the lessons she has learned over the years about the importance of pursuing self-love and independent happiness outside of the happiness of their spouses and children — a valuable lesson many special needs parents should heed.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
In this episode of our “Parenting Impossible” podcast, Annette is joined by “crazy and loving” mom, wife, and author of the book “DEAR LOVED ONES: An Honest Guide to Helping the Special Needs Family You Love,” Julie Falcone.
In her hilarious and heartfelt book, Julie shares her unfiltered experience of raising four children diagnosed with autism, ADHD, anxiety, sensory processing disorder, depression, developmental delay, and oppositional defiant disorder, giving readers a behind-the-scenes look at what it’s like to raise children with special needs on a daily basis and listing a variety of ways family members and friends can truly support their special needs loved ones.
Julie shares accounts of very real, honest experiences, fears, and insecurities so many mothers of children with special needs face, as well as her goal for writing this “letter” to people outside of the special needs community.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
Earlier this year, our founder Annette Hines introduced the sister company of Special Needs Law Group of Massachusetts, Special Needs Family Services.
As part of this launch, we brought on new staff members to help us hit the ground running in 2021. One of these additions to the team is Kerri Whalen, our new Practice Administrator and the guest for this episode of Parenting Impossible.
The subject of this episode is one that we get asked about a lot: What happens when you move your family from one state to the next?
While states’ rights can be liberating, they also present challenges as there is no uniformity of laws and benefits. This can cause a lot of problems for families who move to a different state and end up receiving disparate treatment from what they have gotten used to and relied on.
Kerri knows this circumstance all too well as she recently moved from Maryland to Massachusetts with her family, including one of her teenage sons who is on the autism spectrum.
Kerri shares her experiences of trusting her gut to know what was best for her son, learning from her mistakes along the way, and navigating the different systems and rights between states that so many parents struggle with as they relocate their families.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
When it comes to estate planning, it’s important to know that it is a process, not a one-and-done event. The same is true for creating a special needs plan.
As she does every January, host Annette Hines kicks off the new year with a discussion on the importance of special needs planning. In this episode, she is joined by her favorite podcast guest, her husband and law partner, Mark Worthington, as they discuss the things parents, guardians, and caregivers should update in their special needs plans to start 2021 off on the right foot.
The chaos, loss, and uncertainty we all faced last year have brought more people out to create plans than ever before. While these tools have existed for a long time, the sense of urgency for setting up these vehicles is notably high as the concept of developing a plan has become more real and more important to those with disabilities or a disabled loved one under their care.
Together, Annette and Mark have developed 3 easy steps for refreshing your estate plan in the new year.
After the many ups and downs of 2020, it’s easy to fall into negative ways of thinking.
“Did I accomplish anything I set out to do? Was last year just a waste? Look how many mistakes I made and times I failed…”
Instead of dwelling on the past, the New Year presents the perfect time to examine the goals you weren’t able to accomplish in 2020 and use them to fuel your fire and make a game plan for 2021.
In this episode of our Parenting Impossible podcast, host Annette Hines walks listeners through 4 steps to make 2021 the best year yet, specifically as it relates to achieving your goals with a healthy mindset.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
2020 has been a year of great challenges and loss. However, with the hope of 2021, we can make this new year the best year yet.
We’ve learned a lot about ourselves over the past year, and if we use the knowledge we’ve gained moving forward, we can prioritize wellness in a way that allows us to create safe places at work and at home, even when we are struggling.
In this episode of “Parenting Impossible,” Annette is joined by the Executive Director of Gracepoint Foundation, Ian Adair. Ian is also the author of Stronger Than Stigma, A Call To Action: Stories of Grief, Loss, and Inspiration!, a book that shares stories of ordinary people in extraordinary situations that helps people connect and break down stigmas behind mental health, wellness and more.
As someone who watched his family members face addiction and suicide attempts and faced his own anxiety and depression, he brings a first-hand perspective to the topic of mental health.
As we’ve adapted to the “new normal” of 2020, we’ve seen mental health get pushed to the side.
Fast Company Magazine noted that 37% of survey participants reported working longer hours in the past year. We are still seeing anxiety, depression, and suicide – Annette notes that there have been, “a lot of lonely deaths this year.” Caregivers, parents, health care workers, and more are feeling the weight of burnout.
With all of this negative, how can we flip the conversation?
First of all, Ian believes that the meaning of leadership at work needs to change from managing work to also managing the people to ensure their wellbeing.
Secondly, he believes that as a society, we need to promote the inclusion, awareness and support of people with mental illness. We also need to provide flexibility for people who need time to receive care.
Overall, Ian says, “If you can be anything, just be kind.”
For more information about breaking down stigmas around mental health and mental illness or hitting “reset” in 2021, follow Ian on Twitter and Instagram. You can also follow along with the Gracepoint Foundation on their website or Facebook page.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
It’s that time of year when we all prepare for the future, and this year, there is even more uncertainty than usual. If you are preparing your estate and special needs plans for the new year, this episode will answer frequently asked questions and clarify details about the taxation of these special trusts.
The taxation of trusts can be confusing, especially in the case of special needs trusts.
One of the first issues that Annette addresses is the need for a beneficiary to file an individual tax return. Trustees should warn their beneficiaries of this requirement and ask them to refrain from submitting their tax returns until they hear from you and receive the information that you will share with them.
Annette sends out a letter at the beginning of each year to all of her beneficiaries to let them know that she will be following up with more data and information. More than this communication, you also need to decide if you are going to pay for the tax preparation or not. This is also a cost that the trust could pay for itself.
Another issue that Annette addresses is one of the most frequently asked questions: do you need a tax identification number for a D4A (Self-Settled Trust) or an SNT (Special Needs Trust) trust? Generally, the answer is no. However, you may need one later on when you activate or fund the account. If it sits unfunded, you do not need a tax ID number as you have no reason to activate the account at that time.
This process looks different for each person and each trust, so you should contact your tax specialist and/or estate planner for more information and advice. While this topic can be difficult, Annette hopes that these answers will help you make 2021 the best year yet.
2020 has been challenging to say the least, but with the hope that 2021 brings, there are ways that you can plan ahead to benefit your future self. You’ll be glad you did.
Happy Holidays and Happy New Year!
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
In this episode of “Parenting Impossible,” host Annette Hines answers all of your frequently asked questions. As a speaker, podcast host, author, lawyer, business owner and mother, managing all of her roles can be a challenge, but her goal is to help other people in the disability community find the resources they need in one place. That’s what this podcast is all about!
Annette says, “The information system is so fractured in our community.” In light of this, we need to have one place to go for information. In this episode, she shares her advice and knowledge about general questions for legal terms, caregiver burnout, the COVID-19 vaccine, being an author and podcast host and more. Most importantly, she says that you need to share your story in your own way.
Since each case is vastly different, she is not able to give legal advice to individuals who are not her client. This is not due to the lack of legal fees. Annette needs to know a case and its specific context well in order to give people the best possible legal advice.
More than legal services, you can check out our family services or our free resources for more information to help answer your questions. For legal advice, inspiration and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here.
You can also join our free Facebook community for the disability community, the “Circle of Care,” or watch the webinars and other speaking events on YouTube. The purpose of this community is to create a space for people to be themselves, ask questions and get support and answers, so please share these resources with your friends!
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
Rosalind “Roz” Marshall-Jones joined “Parenting Impossible” to share her experience as a caregiver and her advice for other caregivers to avoid burnout and plan for the future.
In Roz and Annette’s professional and personal experiences, they have seen the lack of future planning through their work with a number of clients. They both recommend having conversations with siblings early on, even small conversations, before moving on to include parents and other family members in the conversation about the future of a loved one’s health and estate. This practice can help you prevent burnout and set family plans and expectations ahead of time.
During the pandemic, we have all been forced to stay home more often than normal, and this can make creating a work-life balance difficult—especially for caregivers. Roz says that caregivers specifically need to have conversations about the future of a person’s condition and their ever-adapting needs at the beginning of their work with a patient so that the expectations and plans are set from the start. Otherwise, burnout can follow quickly.
Another reason that burnout is common for caregivers is that many of them are managing two households. The stress and guilt that can come from their work are easy to bring home and have an impact on their family’s life as well. For Roz, self-care is one of the most important ways to make a difference in your work and home life. She says, “You can’t give from overwhelm, you can only give from overflow.”
You can follow Roz on Facebook, Twitter, LinkedIn, Instagram and Youtube, and you can find more information about her business, Jacksonville’s Best Caregivers, here.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
The holiday season can be stressful enough without a global pandemic adding to an already tense situation. In this episode of Parenting Impossible, Dr. Rebecca Branstetter shares her tips to help parents and school psychologists manage stress in healthy ways in front of kids.
Whether your children are stressed about school, the loss of traditions or the holidays, their negative emotions towards those times can take a toll on their mental health. But more than providing information to parents and professionals to improve mental health, Dr. Branstetter wants to bring transformation to schools and homes.
In the midst of these trying times, she recommends using these three hidden blessings as teaching moments for yourself and your kids:
- Teach Empathy
- Teach Flexibility
- Teach Self-Compassion
Many children who are facing stress either act out or internalize their emotions. You can teach them empathy by co-regulating the situation; you have the power to bring calm to the chaos. Unstructured time can be challenging, especially for children with disabilities. You can ask them to sketch themselves in their imagined future (ex: their ideal holiday season) and then help them manage their expectations. Thirdly, you can only help your child through their stress if you take care of yourself in your stress. You should practice self-compassion through your behavior to show your child how to respond to stress as well.
If your child is especially stressed about the new format of online school, reach out to your school psychologist to create a working partnership for the betterment of your child. They may feel bogged down in case after case due to the unfortunate cycle of their role, but these professionals want to help your child reach their full potential.
In addition to reaching out for support to help your child, you should make sure that you are taking care of yourself. Dr. Branstetter says, “When you find you are criticizing yourself, add the phrase ‘in a global pandemic to the end of it.’” This practice puts everything in perspective and adds context to your current stress.
You can download Dr. Branstetter’s free resource for parents and professionals at the bottom of this page, and you can join Annette’s Facebook group, “Circle of Care” for more information and support.
You are not alone in your stress this holiday season.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
Siblings’ experiences in the special needs community are often not addressed, especially in the professional realm. Parenting Impossible guest, Jessica Leving Siegel, shares her story of growing up with a brother with autism to shed light on the challenges that she faced and that many special needs siblings face every day.
For Jessica, the biggest issue was her hesitancy to express her emotions about her brother to her parents out of fear that she would add to their stress. In her mind, she was not allowed to feel frustrated or upset. She remembers thinking, “That’s not an emotion I can have.”
Beyond restraining and denying her own emotions, she also felt left out. Her parents focused so much of their time on her brother that they always assumed she was doing fine. Having lived this firsthand, one of her biggest pieces of advice for parents is to check in on ALL of your kids to see how they are doing, even the ones who seem to have it together, and give them the space to express their feelings beyond their immediate responses.
Jessica’s experiences have led her to write the book, “Billy’s Sister: Life when your sibling has a disability.” The positive feedback that she received for this work encouraged her to start her podcast, “The Special Siblings Podcast” and create a nonprofit organization, The Center for Siblings of People with Disabilities, to support and empower other siblings like her.
These experiences taught Jessica the power of the phrase, “You can’t take care of others if you don’t take care of yourself.”
You can find more of her resources for special needs siblings here to help as you care for yourself and your loved one, and as you plan for the future.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
While the holiday season is usually the happiest time of the year, it can be a time of incredible sorrow for many families and friends who have lost a loved one or are grieving the loss of family traditions as a result of the pandemic. No matter what you are grieving, the holidays and dark winter can make this time particularly lonely and challenging.
Here are five tips that have helped Annette grieve in healthy ways during the holiday season ever since her oldest daughter, Elizabeth, passed away from Mitochondrial Disease seven years ago:
- Continue Their Legacy Through Stories
Share your favorite stories of your loved one with your family and friends to continue and honor their lives and legacy.
- Make Their Favorite Holiday Dish
Food is such an important part of the holiday season, and you can add a level of meaning to your menu by creating your loved one’s favorite dish.
- Decorate Your Home with Memories
You can pull out old photos and videos, crafts, ornaments, cards, and other items that remind you of your loved one to use as holiday decor. The best decorations are the ones that mean the most and fill your home with memories.
- Foster Generosity
Finding ways to be generous and give back during this time allows Annette to repurpose her pain and help others. Generosity really is the grieving heart’s antidote.
- Prioritize Self Care
This tip looks different for everyone, but in a nutshell, it's important that you don’t push your needs to the side. When you take good care of yourself, you will be able to take care of others as well.
Annette hopes these tips will help you this holiday season, but if you are facing continued grief and need help, don’t hesitate to reach out to your doctor or another mental health professional.
Know that during this difficult time, Annette is grieving with you.
While your grief will never fully go away, it will change with time so that you can find joy again.
Annette is grateful for the second chance she has found through continuing her daughter’s legacy through her work and in the ways she honors her memory during the holidays. We are confident that with time, you can find this peace and purpose as well.
From our “family” to yours, we wish you Happy Holidays.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
Suicide is a dark topic that is full of sorrow and grief, but it is something that needs to be discussed, especially during a pandemic that has caused many people around the world to feel isolated. Gary Roe currently serves as a hospice chaplain and grief counselor for Hospice Brazos Valley in central Texas, and his experience with grief and loss as a child has allowed him to reach out to people during their times of intense sorrow with a heightened understanding of their situation.
Gary describes researching the topic of suicide as, “A solo climb of Mount Everest without any protection.” Since 2000, suicides have increased by 30%. There is a suicide every 11 seconds, meaning 130 deaths per day, and for each completed suicide, there are 25 attempts. While everyone’s experience of death is different, the grieving process after a suicide is especially unique.
Suicide is followed by grief, shame, and many, many questions that start with “why.” Our hearts cannot stop turning over the questions of why it happened and why we could not stop it. We try to retrace our steps to see what we could have done differently, and place blame and guilt on ourselves and situations in the past. Other people around those grieving a loved one lost to suicide might treat them as if they have an infectious disease, avoiding them and distancing themselves as a way of self-preservation.
The first step in moving towards healing from this hurt is to accept what has happened. This practice can help you release some of the unanswered questions. You need to be kind and patient with yourself and have several safe people around you to listen and support you. One person cannot be with you 24/7, so it is important to have a number of safe people around you so that they are not carrying your grief with you alone.
Gary equates grief to a reservoir that sees constant rain. After a while, the pressure builds up, and if the doors are not opened, this life-giving place becomes destructive. You can open up these doors around your grief by talking about your emotions, questions, and fears to other people or by writing and creating visualizations.
Suicide may always be stigmatized by society, but if you can realize this early on, it may save you some anger and allow you to focus on your own healing over time. There will always be triggers—scenes in movies, holidays, memories, certain places—but, as Gary says, “The pain screams, ‘I love you, and I love you still, and I’ll never stop loving you.’”
When you grieve in healthy ways, you can turn the pain into something good that will have a powerful impact on other people. Gary wrote two books, Living on the Edge: How to Fight and Win the Battle for Your Mind and Heart and Difference Maker: Overcoming Adversity and Turning Pain into Purpose, Every Day. Both books can be found on Amazon and each has a version for teens and for adults. You can support Gary’s initiative to help people in dark times find hope by believing in the truth of their worth. Learn more about his Suicide Prevention Project here.
You can contact Gary to help share these resources today.
Listen to his first and second episodes on Parenting Impossible for more advice about grieving loss.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
COVID-19 has made these last few months challenging, and in Gary Roe’s words, “a grieving disaster.” Without the traditional rituals around goodbyes, this pandemic has made it harder for people, including teens, not to bottle up their sorrow. In this second episode with Gary, he shares his experience with teens and grief and ways that family members and friends can help them.
Grief can be especially difficult for teens, as the adolescent years are formative in shaping the rest of their lives, and teens are often afraid to express their feelings in front of other people. They are still learning how to grieve, and need people to model good grieving habits in front of them—including their parents.
Teens experiencing their first heartbreak, death, or loss may often compartmentalize their pain or avoid being alone with their emotions by spending all of their time on their phone or with friends. The best way parents can help is by modeling healthy grieving behavior, as actions will speak louder than words. However, when you do have conversations with your teen, they will listen to you—even if they pretend that they are not listening—if they respect you and know that you love them for who they are.
There is a reason that the safety instructions on airplanes tell parents to put their own oxygen masks on first. If you are not taking care of yourself, you will not be able to take care of your kids. Teens and anyone dealing with grief need “safe people” around them who will love them unconditionally, listen well, and hold space for the release of their grief through conversations, writing, or creative expression.
The disability community has faced more grief than usual, as people with disabilities have accounted for around 40% of the deaths from COVID-19. Gary says that all of us, including teens, need to create new ways to help people say goodbye, such as over the phone, video calls, or other ways.
If you or your teen are facing grief from not having been able to say goodbye, you can try a variety of techniques. First, close your eyes and try visualizing the person. Begin talking to them when you are ready. You can also write them a letter or draw a picture of you having that conversation with them. Counseling is also a great resource, but remember that, “Finding a good counselor is a lot like finding a good pair of shoes,” and it takes time.
Above all when dealing with grief, guard your heart. Gary says that knowledge is not always power, it can create anxiety as well. If something is not healthy for you, you do not have to sit in it, and you especially do not have to sit in it alone.
If you missed the first episode in this series on grief with Gary Roe, you can find the first episode here. You can also see more of Gary’s online resources on his website.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
When most people hear about what Gary Roe does for a living, he says, “They just shake their heads and say, how did you wind up there?” The answer to this question is that Gary had a troubled childhood riddled with grief that he transformed into a career path for good, thanks to help from many people who supported him during those trying years. After studying psychology and going to seminary, Gary currently serves as a hospice chaplain and grief counselor for Hospice Brazos Valley in central Texas.
From the ages of three to seven, Gary was sexually abused. This trauma was followed by the death of two grandfathers, a grandmother with dementia who could not remember him, and the death of a dear friend at the age of 12. A few years later, his mother began to show signs of a mental illness, and his father had a heart attack right in front of him. Gary was 15 years old when he and his brother made the decision to take their dad off of the ventilator. After all of this trauma and loss, Gary was given a second chance to have a family when another student at his school invited him to live with his family. Their acceptance of him changed his life.
Gary’s experience of grief and loss inspired him to support other people in their grief. He knows that there is no “magic pill” or perfect “prescription” that cures everyone’s grief. Gary notes, “You don’t graduate from this, you move forward.”
Not all grief involves mourning the loss of a person—you can mourn a financial loss, the loss of a job or a dream, and more. Life is a series of little “deaths” that we have to learn how to grieve in healthy ways. Rather than toughening up, “moving on,” sitting in pain, overeating, starving, and ignoring your pain, you have to face it one day at a time. The experience of grief is like being in a forest: you are surrounded by darkness and trees, and you only have enough light to see a few steps ahead of you.
There are three thoughts that every grieving person has:
- Am I alone?
- Am I crazy?
- Am I really going to get through this? And if I do, who am I going to be on the other side?
We may wish that grief came with instructions so that we could move past these questions quickly, but Gary has a simplified acronym to help people process their pain: A.I.R. it out. “A” stands for acknowledge, “I” stands for identify, and “R” stands for release. Once you acknowledge what is going on, you can identify how it is making you feel and release these feelings. This is a repeating process that lasts for as long as you need it to. Gary suggests that people release their feelings by talking to someone who loves you and who listens well. You can also write or create art or creative visualizations that will help you express yourself.
Your experience will be different from everyone else’s because you are unique. For Annette, her experience of grief “was like going through jello.” She was forgetful and exhausted, and part of her did not want to let go of the pain of losing her daughter, Elizabeth, to mitochondrial disease because the grief made her feel like a better mom.
Grief does not have an expiration date, and it is because we feel love that we feel grief. According to Gary, “All you can do in grief is to grieve.”
You can see more of Gary’s online resources on his website.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
Mark Worthington joins Parenting Impossible to share his insight about Trust Protectors and their role with Special Needs Trusts. A Trust Protector acts as a supervisor or watchdog to ensure the security of a trust, in part by observing the Trustee’s actions within the financial account. Often, families do not want to burden a single person with the role of Trustee, but they also know that having a Co-trustee can make the situation tense or complicated.
Selecting a Trust Protector is the most effective in these three situations:
- When you need someone to act as a go-between for the Beneficiary who has a disability and the Trustee
- When you need to review, supervise, and oversee the Trust’s accounts
- When you need to remove and/or replace a Trustee
A Trust Protector oversees the financial decisions and ensures that the relationship between the Trustee and the Beneficiary is successful at all times, removing the Trustee if necessary.
Because of the nature of this supervisory relationship, the Trust Protector can wield a lot of power over the Trust if you are not careful. One of the most dangerous threats to their financial stability that a Beneficiary can face is for their Trust Protector to have broad power over their Trust account. Given too much power, a Trust Protector could interfere with the funds in the trust or strain the relationship between the Trustee and Beneficiary.
Special Needs Trusts can be difficult to understand and manage, and these challenges are part of the reason that Annette and Mark founded the Special Needs Law Group of Massachusetts. Banks and trust organizations are often unwilling to take on a Special Needs Trust because these trusts are too tedious to maintain or are too small monetarily.
Learn more about bringing on a Trust Protector in this episode below.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
Mom, podcast host and self-proclaimed loudmouth, Tamara Taggart, joined Parenting Impossible with host Annette Hines to talk about society’s perceptions of people with disabilities, specifically those of people with Down Syndrome. Tamara’s son, Beckett, was born with Down Syndrome, but the doctors did not diagnose him immediately. When they did, his disability was presented to her as bad news.
After receiving her son’s diagnosis, instead of accepting the doctors’ negative mindset about it, Tamara became a “loudmouth” advocate and “captain of her son’s team.” She sent out an email to friends and family to announce the birth of a beautiful and healthy baby. When a baby is born, Tamara says, you’re supposed to say “congratulations,” not “I’m sorry.”
In her experiences over the last 13 years with Beckett, Tamara has found that the way people speak about Down Syndrome and the way they segregate those people with disabilities has stood in the way of Beckett reaching his full potential. Early on, a geneticist told Tamara that Beckett “is who he is,” implying that his potential was limited and set in stone. To Tamara, Beckett is a normal person, just with an extra chromosome.
While Beckett’s life skills teachers and specialists are amazing, Tamara believes that to have true, meaningful inclusion, we need to ask individuals with disabilities what they want to do or accomplish. According to Tamara, society may think that it knows a lot about Down Syndrome, but every person is unique.
Annette had a similar experience with her daughter, Elizabeth. During an appointment with a neurologist early in Elizabeth’s life, he likened Elizabeth’s brain to “swiss cheese.” For a young mom watching her child fight for her life, those words cut deep, similar to how Tamara felt hearing the words Beckett’s doctors used to describe his condition.
Tamara’s advice to parents in the disability community is to speak up, even if your voice shakes, and to remember that you are the “captain” of your family’s team. You have the power to advocate for your child, and you will regret it if you do not stand up for yourself or your child.
In March, TELUS approached Tamara and asked her to host a podcast, and she recorded her first episode of TELUS Talks with Tamara Taggart that afternoon. She loves being a host because she loves talking to real people who have important stories to tell who and are making a difference.
You can learn more about Tamara on her website and connect with her on Facebook, Twitter and Instagram. Join Annette’s Facebook Group, “Circle of Care” to be a part of a group of parents sharing encouragement and resources for children with disabilities.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
Mary Beth McMahon, President and CEO of Special Olympics Massachusetts, joined Parenting Impossible with Host Annette Hines to discuss the transition to virtual activities and society’s perspective on people with disabilities.
When COVID-19 forced Mary Beth to move the organization’s events and summer games online, she knew she would need to keep the events engaging and inclusive. One of the biggest ways that she has pivoted during this time is by continuing to promote the Special Olympics program known as Unified Champion Schools. This “unified sports” program is open for students of any ability to join a unified sports team for basketball or track and field, and it is currently implemented in 202 high schools.
The Unified Champion program has allowed students to form genuine relationships while developing their skills, and Mary Beth and the staff at Special Olympics Massachusetts are working to bring this program to middle schools as well. Unified sports have positively impacted many lives, including the lives of Mary Beth’s children. Her son plays on a unified soccer team, and because of this and his experience being brought up around Special Olympics, he does not see people with disabilities as solely defined by those disabilities, but as human beings in their own right. Mary Beth firmly believes that while we may not be able to change a person’s opinions, we can change a culture’s perspective on disabilities.
In addition to the Unified Champion program, Special Olympics Massachusetts offers small, in-person events as well as virtual events and activities. From virtual dances, games, and activities to hiking, running, snowshoeing and more, athletes of all ages are invited to participate in the sports and events they enjoy.
Mary Beth began her work with Special Olympics as a volunteer, and she continued to come back to events out of her desire to do more for the athletes. To date, she has worked for the organization in Maryland, Northern California, Nevada, and Massachusetts. You can contact her via email at Marybeth.McMahon@specialolympicsma.org.
Follow Special Olympics Massachusetts on Facebook and Twitter to stay up to date with their virtual and in-person events.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
Derek “Tank” Schottle, a Special Olympian with Autism from Sugar Land, Texas, joined Parenting Impossible to share his experience with sports and inspiring other people with disabilities through social media. Tank joined the Special Olympics in 2001, and plays seven sports: softball, basketball, volleyball, track, bocce, golf, and soccer. Annette has been following Tank on Twitter and was inspired by his positive messages—he is known best for his inspiring message about the Special Olympics and what it means to him.
In 2019, the Secretary of Education, Betsy DeVos, tried to cut $17.6 million from the Special Olympics budget. Tank responded to this news by sharing a video on social media to talk about how much the Special Olympics means to him. The video went viral, and led to multiple interviews, including one with CNN. In these interviews, Tank shared with reporters how the Special Olympics had changed his life. He knew that it would be difficult for many of the athletes who were in school to participate if the budget cut was confirmed. By speaking up, Tank made a difference— the proposal to cut the Special Olympics budget was ultimately canceled.
Tank’s inspiring messages were not limited to the subject of the Special Olympics. Growing up, he experienced a lot of ups and downs and thankfully had a supportive family to help him along the way. Tank tweets messages of encouragement frequently and shares what’s in his heart for others. His advice to younger people with disabilities is to never give up on yourself or to change for anyone else. He believes that you should not let your disability define you, and encourages others to keep fighting for their dreams and to use their voices for good.
Tank also received The Don Rodman Profile in Compassion and Courage Award from the S.E.A.L. Foundation in Massachusetts in 2019. In his acceptance speech, he shared that most people did not have high expectations for him growing up, but he saw himself as achieving more than just his role as a greeter at Walmart. His devotion to and passion for sports has allowed him to succeed as a Special Olympian as well.
You can connect with Tank on Facebook and Twitter to read and share his words of inspiration.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
Conversations about inclusion often talk about race and diversity, but one topic that people often leave off the table is ability. In honor of Down Syndrome Awareness Month, Michelle Sie Whitten, the President and CEO of the Global Down Syndrome Foundation, and her daughter, Sophia Whitten, who has Down Syndrome, joined Parenting Impossible to discuss the meaning of true inclusion for people with Down Syndrome and other disabilities in society, research, education, and more.
As the topic of diversity becomes more widespread, people with disabilities tend to be “featured” for their disabilities rather than being included as whole, unique human beings. Sophia and Michelle talk about Down Syndrome as only one small part of a person’s identity, not their entire identity
With this language in mind, one of the Global’s initiatives is to fund and support research that benefits people with Down Syndrome. The Foundation has donated more than $32 million to establish the first Down Syndrome research institute, supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. The Foundation also has several medical publications including Global Medical Care Guidelines for Adults with Down Syndrome, which was recently released after four years of research.
People who have Down Syndrome are more likely to develop Alzheimer’s, certain types of Leukemia, autoimmune diseases, and other health complications, and this research is an important part of the efforts needed to give these individuals a better quality of life for a longer period of time. This work is especially important during the pandemic, as people with intellectual and developmental disabilities are at high risk.
To support this research as well as its outreach efforts during the pandemic, the Global Down Syndrome Foundation continues to raise money. The Foundation’s largest fundraiser and the largest fundraiser for Down Syndrome in the world, the “Be Beautiful Be Yourself” Fashion Show, will be a virtual event this year on Saturday, Nov. 14, 2020. Sophia will be participating with several others as a model, and several celebrities will perform, including Jamie Foxx and his sister Diondra Dixon, as well as Amanda Booth and Qunicy Jones. You can join this event by visiting the website. Tickets are $25 and will support the Foundation’s mission.
You can connect with the Global Down Syndrome Foundation on Facebook, Instagram, Twitter, and LinkedIn.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
In a time of confusion and fear, Parenting Impossible guest Laura Whitaker says that she is leading her business with courageous and thoughtful decision making rather than being reactive to the constant changes that are occurring. Laura is the Executive Director of Extra Special People (ESP) in Athens, Georgia, an organization that provides summer camp, resources, support, and services for families of kids with disabilities. She started in this role when she was 19 years old, and she says that while some people may choose their job, this job chose her.
COVID-19 has made her organization’s traditional methods of operation challenging, so before attempting to create a system using what they already knew, they first asked each of the 600 families that ESP serves what they wanted and needed. Using the feedback they received, they created new services to provide support and resources for these families, including summer camp, “buddy calls,” support groups, counseling, and more. Laura’s favorite new activity to come out of the pandemic shift is Power Hour, a time for parents, kids with disabilities, camp counselors, program coordinators, and others to enthusiastically engage and share resources online. This program is available to anyone, anywhere, and you can find more information about it here.
Beyond helping her create new services, the pandemic has confirmed Laura’s belief that relationships and connections are essential, even virtually, and that moving forward with courage can allow you to analyze a situation thoughtfully before making a decision. One of her favorite quotes from Winston Churchill states, “Fear is a reaction. Courage is a decision.” These words have helped shape the way ESP has continued to serve their community during this time.
Throughout ESP’s years of service and their changing methods during the pandemic, Laura’s goal has always been to educate while instilling confidence and compassion in people who are involved in the special needs community as well as families and individuals who may feel confused or scared about engaging with people with disabilities.
In 2019, Laura gave a TEDx Talk about what she calls the “Dandelion Shift.” This shift illustrates that, as children, many of us did not view race, color, ability, societal rules, or wealth in the same way as adults. She likens this to the way we see dandelions—a plant her young daughter enjoyed for its yellow beauty, but that her neighbor sprayed with weed killer in their front yard. Laura says that creating a knowledgeable and empathetic community can help people of all abilities learn new values and perspectives about life.
Laura and her remarkable team continue to lead with courage and help other organizations looking to support families of kids and adults with special needs duplicate their success. They are working to make ESP available in more locations and to help others learn from their years of experience and established reputation in the community. You can learn more about this organization here.
You can connect with ESP through social media on Facebook, Instagram, Twitter, LinkedIn, Vimeo and Youtube, and you can contact their team here.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
After six years of proposals, feedback and edits, the Internal Revenue Service (IRS) finalized the Achieving A Better Life Experience (ABLE) Accounts regulations on Oct. 1, 2020. While some of the regulations were expected or familiar, others were a bit of a surprise. In this episode of Parenting Impossible, Host Annette Hines talks with her favorite podcast guest, her husband Mark Worthington, about this finalized document and the implications it could have for people with disabilities and their families across the country.
ABLE Accounts were created to help people with disabilities and their families save and pay for disability-related expenses. These regulations may not be perfect, but they are a great tool that could help your family.
Five of the main points that Annette and Mark address include:
- The designation of authorized signers and authorized successor signers of the ABLE Account is selected by an eligible individual or determined by a hierarchical list of candidates for a person who lacks the capacity to designate someone.
- For an ABLE Account, you can have marked and severe functional limitations but still be involved in a Substantial Gainful Activity (SGA).
- You can put an additional $15,000 in the account from outside sources, but any other funds added to the account (up to about $12,000) must be from the eligible individual.
- Individuals are responsible for tracking expenses to correctly pay their taxes, but they no longer have to report these expenses to the account. In addition to this regulation, the owner of the account, an eligible individual, can treat qualified disability expenses paid up to and including the 60th day of the new tax year as being paid in the previous tax year.
- Eligible individuals can name a death beneficiary, and if none is named, it goes to the designated beneficiaries or the eligible individual’s probate estate. Upon the death of the individual, the IRS allows you to pay qualified disability expenses even if it is not for a pre-death contract, meaning you can pay for the funeral after death and before Medicaid payback.
The final regulations are not on the Federal Registry yet, but you can read the full document by visiting the IRS’s website here.
Mark is also an experienced special needs lawyer, a Professor of Law, and a Director of the Graduate Program in Elder Law and Estate Planning at Western New England University School of Law.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
In this episode of our Parenting Impossible podcast, Annette interviews “warrior woman,” Nina Bakoyiannis, to discuss the interwoven framework of disability discrimination in our society that exists both interpersonally and institutionally.
Under her pen name “Despina Bakos,” Nina created a blog where she talks more generally about her experiences growing up with a physical disability and the issue of ableism in our society. She also works with a grassroots disability rights organization in New York called ADAPT that is currently working on Medicaid reform and advocates for funding and community understanding of home care services. In her professional life, she is currently studying to be a clinical psychologist, completing her third year of a Ph.D. program where she studies the intersection of ableism and mental health.
Nina describes ableism as the discrimination towards disabled people that manifests in a wide array of damaging behaviors. One such behavior is believing that the lives of disabled people are more disposable than others. Another ableist behavior is assuming that able-bodiedness is the standard. This mindset creates lower expectations for disabled people regarding relationships, employment, quality of life and more.
Unfortunately, the majority of lawmakers operate under these assumptions, leaving the disabled community unrepresented and unprotected. For example, many people are disqualified from benefits, SSI, and Medicaid when they get married because their partner’s assets get added into the equation, increasing their household income above the maximum limit that these programs will cover. This discrepancy leaves individuals with disabilities without the financial support they need.
Nina and Annette also dive into the discussion of Institutional Bias. People with disabilities and those who are dependent on home and community care should be able to stay in the community and not be forced to live in an institution. Advocates are fighting to prevent members of the disabled community from being mandated to live in institutions when that is all that Medicaid will pay for.
Listen to the full conversation in the podcast below. You can also find Nina’s website here and follow her on Twitter and Instagram.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
The death of Associate Justice of the Supreme Court, Ruth Bader Ginsburg, has brought a new push for disability rights. In this episode of Parenting Impossible, Host Annette Hines talks to Alison Barkoff, Director of Advocacy at the Center for Public Representation in Washington D.C. They discuss the impact of Justice Ginsburg's death on the disability community's fight for civil rights and why litigation to combat institutional bias is essential for the wellbeing of people with disabilities.
Alison came to this profession based on personal experience and connection to the disability community through her brother Evan who has Down Syndrome. Her family made the courageous decision to care for him themselves rather than sending him to an institution nearly 40 years ago. This choice made Alison realize the lack of support for families like hers.
Justice Ginsburg wrote the groundbreaking decision for the case, Olmstead v. L.C., in 1999 that said the segregation and discrimination of people with disabilities was a violation of title II of the Americans with Disabilities Act. According to Alison, this case is the centerpiece of the disability community's civil rights movement. It gave people with special needs the civil right to participate and be included in their community for the first time.
Ever since the 1980s, American society has greatly enforced antiquated institutional services. New lawsuits are in progress across the country, fighting for individual rights and care instead of group-enforced institutional living. These cases have expanded the ruling of the Olmstead v. L.C. decision by challenging educational and care homes that are privately funded but run like traditional institutions. This fight is not trying to simply change where people with special needs live but also how they live.
Alison's work within policy and as a litigator has allowed her to be a part of the fight in several of these new lawsuits, one ten years ago in Georgia and another recently in Texas. These lawsuits work to show how people with disabilities are far more capable of making their own decisions and having a say in their care than people previously believed.
The push for disability rights is also about reforming healthcare and Medicaid, for Medicaid may provide support for families with children who have special needs. It was initially created for a society based on institutionalized ideals, and private insurance does not typically cover the support or services that these families need. This discrepancy leaves the question to families of whether or not to risk choosing an institutionalized service or take on the burden of care alone for the foreseeable future.
In 2014, the Home and Community Based Services Settings Rule was implemented, and states are still working to make the required changes. While this may be frustrating for families who desperately need home and community services for support, this rule is groundbreaking and will ultimately lead to individualized care across the nation.
Each state has an advocacy and disability rights center. You can find the contact information for the Center for Public Representation in Washington D.C. through their website, and you can connect with them on Facebook and Twitter. You can also contact Alison by emailing her at abarkoff@cpr-us.org.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
In this episode of Parenting Impossible, Host Annette Hines talks about bringing behavioral analysis training home with her guest, Jessica Guzman. Jessica previously worked as a Board Certified Behavior Analyst, or BCBA, in Austin, Texas, to help families navigate challenging behavior for their young children with special needs. She also has a master’s in education. Recently, she created her own company, “Little Wildlings Ltd. Co. ” where she is a behavior consultant who helps kids from 18 months to 6 years old with behavioral issues.
Annette and Jessica first connected on LinkedIn when Annette saw a message Jessica had posted from a clinician that read:
“When you hire a clinician for your child, try to find one who understands that their job is ultimately to eliminate the need for the very same job you hired them for.”
Jessica’s message affirmed Annette’s experience in clinics with her daughter, Elizabeth, which had shown her the need for clinicians to have this philosophy. Jessica’s success as a BCBA has also shown the benefits of having this mindset—Jessica’s goal is to teach her clients (family members, caregivers and the special needs child) the tactics and techniques that are appropriate and practical for their individual needs so that they can implement these changes on their own.
In this special episode of Parenting Impossible, Host Annette Hines welcomes back some of her early podcast guests, Hillary Dunn Stanisz, Cheryl Ryan Chan, and Dave Greenwood, to celebrate the podcast’s first anniversary and open the door to the future of conversations about special needs. This episode is also significant because Annette lights a candle for her daughter, Elizabeth, in honor of Mitochondrial Disease Awareness Week.
Annette launched Parenting Impossible - The Special Needs Survival Podcast out of the desire to connect with the special needs community and create a one-stop-shop for conversations, information, and resources that she could not find when her children were small and she needed it most. To further her goal of helping the special needs community, Annette also founded Special Needs Companies. Not everyone has access to an attorney, some people gather information in different ways, and others are not sure what they are looking for. Regardless, this podcast provides an opportunity to hear advice and stories from experts while you relax and enjoy your coffee.
Cheryl, featured as a guest on Episode 2 and 29 of Parenting Impossible, is a professional facilitator, focused on person-centered planning for people with special needs and their families and caregivers. She is also a mom to her 27-year-old son, Nicky, who is severely impacted by autism. For Cheryl, this podcast encourages resiliency and sustainability, and people are drawn to it because Annette brings her expertise and heart to every episode.
Hillary, a lawyer at the Disability Law Center in Boston, joined the podcast previously in Episodes 3 and 4. Her brother, Chris, is now 42 years old and has Angelman Syndrome. He may be nonverbal, but his killer smile and big heart influenced Hillary’s career path and every part of her life. She is grateful for this podcast because it is the only place that addresses the roles of siblings in the special needs community.
Dave produced many episodes of Parenting Impossible, taught Annette how to use a microphone, and was previously featured in Episode 14. He helps busy professionals create content, including podcasts. He is the author of the book, Overcoming Distractions: Thriving with Adult Attention Deficit Disorder, and speaks about the positive aspects of ADHD in his book and his podcast. Dave says that people in the special needs community are tired and confused, but Parenting Impossible is a place for them to get relevant information that will help them in their everyday lives.
For future podcasts, Cheryl and Hillary suggest discussing community and federal laws concerning the special needs community, abuse and neglect from caregivers, stories from families, and sharing resources that are hidden gems.
Dream podcast guests for the future include actor John C. McGinley, who is an advocate for people with down syndrome; Tim Shriver, a film producer and disability rights activist; national media correspondents; and other guests with disabilities.
Annette and Parenting Impossible have come a long way from her early episodes, when, for example, she had a case of nerves and mispronounced her own name! Over the past year, the podcast has featured experts from a wide variety of fields, shared invaluable resources, and featured families in the special needs community. In every episode, you’ll find genuine conversations designed to help you face any challenge you’ll encounter in the world of special needs. Stay tuned for an exciting new chapter of Parenting Impossible!
In this episode of Parenting Impossible, host Annette Hines talks to sleep consultant Melissa Doman. For more than ten years, Melissa has worked with special needs families who are fed up with sleepless nights and are ready to find solutions despite being told there’s nothing that can be done about their child’s sleep problems.
Annette and Melissa begin their discussion with an explanation of "sleep training" and how it can benefit special needs children in particular. Melissa breaks down the importance of using techniques — other than medication — to build new sleep routines and habits. They also touch on the added difficulties that come with seizures and the connection they have to sleep.
Melissa combines the Doman Method with the Sleep Sense Program created by Dana Obleman to help kids with special needs develop independence within their bedtime routine, no matter their diagnosis or age. This process of neuro-rehabilitation usually takes about three weeks, but in the end, both the child and their family members or caregivers will have improved the quality of their sleep.
With the onset of COVID-19, anxiety has increased for a number of families and their special needs children, and sleep has become an issue for kids who previously slept well. Melissa addresses certain fears that these children face and uses checklists to ensure consistency that can help ease their stress.
Melissa’s top three tips for families with special needs children who struggle to sleep are:
Don’t skimp out on bedtime — earlier is always better than later.
Have a consistent bedtime routine that incorporates whatever physical or tactile needs your child has.
Encourage independence as much as possible, and sleep quality will improve.
Annette’s advice? Don’t be afraid to ask for help if you need it. You don’t have to suffer alone night after night.
Melissa lives in Philadelphia, Pennsylvania, but she provides services and information for families across the country virtually and in her blog.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
In episode 68 of Parenting Impossible, host Annette Hines speaks with special needs mother Leah Moore. Leah is not only a mother of three but also a writer and high school English teacher. As a writer, she has been featured in several publications including Today’s Kids in Motion Magazine, and has her own blog, Loving You Big. Leah is currently working on her first book as well. Leah’s life changed after her daughter Jordan was diagnosed with Cri du Chat syndrome, a rare chromosomal disability. Doctors told Leah her daughter may never walk or talk, but today Jordan is dancing through life. Annette and Leah begin the podcast with a discussion about navigating distance learning as a teacher working from home while still parenting three children. " Each day my husband and I are trying to be positive while losing our minds. Every day is either a ten or a one, there’s no in-between," according to Leah. The two women also address what inspired Leah’s blog and book. Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
In the words of Parenting Impossible host Annette Hines, "give yourself a break." In this mini-podcast, Annette shares four tips special needs parents and caretakers should consider as they continue to navigate distance learning and new social distancing guidelines associated with the COVID-19 pandemic. Find or Recreate Your Team: Think about one or two people in your life that can step in and allow you to take a physical break. Whether it’s a member of your church, a neighbor, friend, or family member, a few hours to yourself can do a world of good. Be sure to do your research when it comes to receiving help from public agencies as well. Many of these organizations have extra money available but you have to ask for it. If you need extra financial support, reach out, and speak up. Engage With Someone Who Can Help, Even If They Can’t Watch Your Child: Even though a family member or friend might live far away, that doesn't mean you can’t rely on them for relief. Assign tasks like phone calls, research or even chores to people who are willing to help but can’t physically take care of your child. Social Distance From Your Children: Find a public outdoor space where a family member or friend can keep an eye on your children for a few hours. Use that time alone to take a nap, meditate or read a book. Do something that makes you happy and allows you to decompress. Cut Yourself A Break:
You need to understand that nothing is going to be perfect! Don’t beat yourself up because you’ll never win that way. Make sure you’re getting enough sleep, good nutrition and exercise. Remember, you have to take care of yourself too. Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
In this episode of Parenting Impossible, host Annette Hines and guest Matthew Cox discuss what it’s like to grow up with a learning disability and how it applies to distance learning in today’s climate. Matthew Cox spent his elementary and middle school years thinking there was something wrong with his brain. For him, school work was a daunting and often embarrassing challenge. He was the kid who never seemed to catch up with his classmates, no matter how hard he tried. "Growing up with a disability was like having an elephant in the room that nobody wants to talk about," said Matthew. Being diagnosed with a learning disability during high school helped him put a name to the problem and begin his journey to personal and academic success. Thanks to his family, Matthew was able to overcome the hardship of his disability and has dedicated his life to helping others find their purpose. He now hosts a variety of training workshops, speaking engagements and his own podcast, Purpose Driven Person Show. Annette and Matthew begin with his personal experience as a child and how he couldn’t read or write like everyone else his age. This was embarrassing for Matthew and at the time, he didn’t understand why he was different. After he was diagnosed with ADHD, he realized there was no one-size-fits-all system for learning, and knew he never wanted another child to feel the way he had growing up. From that moment on, he began working with foster children and realized helping others was his gift. "For me, as a short bus kid," says Matthew, "I had to learn to love myself, but it took a long time to get to that point." Later, Annette and Mathew talk about neurodiversity and how our current situation with COVID-19 mimics issues Matthew experienced as a child. "Kids should be given a different option if they’re more visual learners," said Mathew. They also discuss the need to fight for education reform, particularly within the special education community. "If we actually listened to kids and parents, I think we could come together as a community and do something really inspirational with our education system," said Annette. Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
In this episode of Parenting Impossible, host Annette Hines discusses meaningful communication with guest Randi Sargent. Randi created the website SayitwithSymbols.com, the only source dedicated to taking the guesswork out of caring for adults with cognitive/communication challenges by using easy-to-use, picture-based communication aids designed specifically for adult caregiving.
Randi was inspired to start SayitwithSymbols.com after the birth of her son who was born with severe communication and intellectual disabilities. Despite years of specialized programs, Randi’s son never developed the ability to speak, read, write or walk independently.
Today, she has created products that have been uniquely designed to be functional for adults based on best practices supported by academic research. Randi’s products have been field tested and improved by caregivers trying to communicate with their loved ones who cannot speak.
Host Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
In this episode of Parenting Impossible, host Annette Hines and Employment Law Attorney Rebecca Pontikes discuss the Families First Coronavirus Response Act and how to access different benefits you may be entitled to as a caregiver. Pontikes is the founder of Pontikes Law, LLC and represents employees in all areas of employment law. She specializes in gender and family responsibility (caregiver) discrimination, sexual harassment, negotiation of employment contracts and separation agreements, non-competition agreements, retaliation and whistle-blower claims (in all sectors, including the government and financial sectors), violations of the Family and Medical Leave Act, and violations of the wage statutes. Annette and Rebecca begin the show with an explanation of the Families First Coronavirus Response Act. The act requires certain employers to provide their employees with paid sick leave or expanded family and medical leave for specified reasons related to COVID-19. There are six general reasons an employee may qualify for paid sick time if they are unable to work: You are subject to a Federal, State, or local quarantine or isolation order related to COVID-19.
You have been advised by a health care provider to self-quarantine related to COVID-19. * You are experiencing COVID-19 symptoms and are seeking a medical diagnosis.
* You are caring for an individual that has been ordered to self-quarantine.
* You are caring for a child whose school or place of care is closed for reasons related to COVID-19.
* You are experiencing any other substantially-similar condition specified by the Secretary of Health and Human Services, in consultation with the Secretaries of Labor and Treasury.
Under the FFCRA, an employee qualifies for expanded family leave if the employee is caring for a child whose school or place of care is closed for reasons related to COVID-19. However, as Annette and Rebecca discuss, employees taking leave as a caregiver are only entitled to be paid 2/3 their regular rate. Annette and Rebecca also break down the difference between furloughs and layoffs and how to access certain benefits you may be entitled to like vacation days, healthcare and unemployment. Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
Is our education system supporting the needs of kids with disabilities during the ongoing COVID-19 pandemic? That’s the question host Annette Hines, Psychologist Allison Brooks, and Special Education teacher Megan Parker discuss during Episode 64 of Parenting Impossible. Allison Brooks is a psychologist working in the Seattle Washington area. She has an extensive history speaking about topics such as Fetal Alcohol Spectrum Disorders (FASD), Autism, educational advocacy, motivation for middle schoolers, ADHD, and anxiety. Brooks has also served on state advisory councils for autism, FAS, and school refusal. Megan Parker is a Special Needs teacher working in Florida; a state that’s currently embattled in a controversy over how to handle the 2020 school year. This week, some districts started in-class learning despite a lawsuit filed by the Florida Education Association to delay classroom learning. Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
In this edition of Parenting Impossible, Annette and her husband Mark Worthington discuss what you need to consider during the divorce process as a parent of a special needs child. Mark is Senior Counsel at Special Needs Law Group of Massachusetts and is a Professor of Law at Western New England University School of Law. He has also been named to the Massachusetts Super Lawyers list every year since 2008. Annette and Mark begin the show with a conversation about the increased number of people filing for divorce during the pandemic. The rise comes as more people have been forced to spend extended periods of time quarantined together. While divorce is a stressful process in general, it comes with an additional set of challenges for couples with special needs children. Annette begins with her advice on creating a trust for child support. While she acknowledges each situation is different, she generally believes most cases do not require one for children under the age of 18. Once the child becomes an adult, a new plan must be put in place. Annette and Mark also share their thoughts on the importance of planning for the future. That includes figuring out what will change once your special needs child becomes an adult, health insurance options, and estate planning. The couple breaks down some of the options that are available and why it’s so important to lay them out during the divorce process. Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
How do people with special needs get permission to come to the United States for specialized healthcare? In this week’s episode of Parenting Impossible, host Annette Hines learns more about the complicated process from Immigration Attorney Linda Osberg-Braun. Ms.Osberg has served as the Deputy District Counsel for INS (now DHS) and was an Assistant Federal Public Defender in the Southern District of Florida. She is known for her ability to solve complicated immigration problems and focuses on developing immigration solutions and comprehensive long term strategies for her clients. Annette and Linda dig into "public bar charge" and how it affects families seeking medical treatment and residency in the United States. The public charge concept was first established by Congress in 1882 to allow the government to deny a U.S. visa to anyone who is likely to become a "public charge" -- or use government-funded programs. Under the current administration, the "public charge rule" has been interpreted more broadly, which has redefined what makes someone dependent on government benefits. This essentially reduces the number of people who would be eligible for green cards and other visas. Ms.Osberg later explains the process families in need of specialized healthcare need to follow, and how they can obtain different types of visas in order to stay in the country legally and support themselves. This includes "humanitarian parole," which is a method used to bring someone into the United States for a temporary period of time due to a compelling emergency. This could include medical treatment for a family member with special needs. To contact Immigration Attorney Linda Osberg-Braun for advice on navigating this process, follow the link: https://www.osberglaw.com/ Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
In this episode of Parenting Impossible, Host Annette Hines and her husband Mark Worthington discuss issues surrounding sending children back to school in the Fall. Annette addresses the additional challenges kids in the special needs community are facing during this transition period and shares her experience with distance learning.
"This pandemic has given us an opportunity to look at our educational system for all children with fresh eyes but particularly for our children with special needs," says Annnette. "Let’s put all our preconceived notions aside about education, wipe the slate clean and start fresh. Here are only a few things to consider:
- As the parent/caregiver, do you have the ability, desire, and time to create your own curriculum for your child?
- As the parent/caregiver do you require special training that you don’t yet have to teach or care for your child?
- Has your child responded well to less social stimuli at home?
- Has your child regressed without their peers?
- Does your child have a low incidence disability such as blindness, deafness, etc?
- Does your child require special equipment that you can only get at school such as a vision room or a standing frame?
- Does your child have a medical condition that will make it too risky to return to a classroom without a vaccine or herd immunity?
- What else needs consideration?
It costs a lot to educate our children in the system that we have. We may want to think through how we rebuild our special education system to be responsive to the educational needs of children and families and let’s actually include families’ voices this time. Secretary DeVos just announced that if schools were not going to reopen then she would hand out the money to families instead to educate their children. Well, why not? We could use it!"
Music therapy is subject near and dear to Parenting Impossible host Annette Hine’s heart. In this episode, Roman Music Therapy Services Executive DIrector Meredith Roman Pizzi joins Annette for an in depth discussion on the difference music therapy can make in the special needs community.
Ms. Pizzi is a thought leader and passionate champion for the music therapy profession. She’s devoted her career to developing business models for the delivery of music therapy services and is an advocate for music therapy on the systems level. Ms. Pizzi founded several music therapy organizations and programs, including Roman Music Therapy Services and Sprouting Melodies ®, an award-winning early childhood music program with worldwide reach. She also co-founded Raising Harmony, which trains music therapists, parents and early childhood professionals on use of music therapy strategies and tools with young children.
Roman Music Therapy Services partners with companies, healthcare organizations, human services agencies and schools to provide goal-driven wellness programming where music is used as a platform to facilitate positive change.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
The COVID-19 pandemic has undoubtedly changed almost every aspect of our lives. This includes how we work, socialize and learn. In Episode 59 of Parenting Impossible, Host Annette Hines and guest Dr. Ingrid Amorini-Klimek address what special needs education could look like in the future. Dr. Amorini-Klimek is a lifelong advocate for special needs families, the sister of a special needs brother, and has extensive experience as a special education teacher. For many years, she worked as an administrator for a large educational system but said, "Over time she became disappointed in the bureaucracy that failed to listen to the needs of the community." This led to the creation of her own special needs resource center, Our Special Village. She is also the founder and president of the non-profit organization, The Bocha Project, whose mission is to promote inclusive practices around the world. Annette and Dr. Ingrid begin the show with a discussion on how the pandemic has added extra stress for families who have a loved one with a disability. The doctor shares her brother’s personal struggle with not wanting/understanding the importance of wearing a face mask. She worries his refusal to cover his face in public could result in a loss of privileges like traveling on a plane or being allowed inside public establishments. Next, the two special needs experts jump into how classes and programs will need to change to accommodate social distancing rules and safety procedures. They agree programs should not be structured as a "one size fits all" method, and instead need to be tailored to individuals. While some children have fallen behind during the lockdown, Dr. Ingrid shares her personal experience watching others thrive. Finally, Annette and Dr. Ingrid jump into a conversation about how the role of special needs parents will be different moving forward. After spending months working one-on-one with their children, parents have now become the experts. This shift will create a new dynamic between families, teachers, and administrators in the future. Annette believes the solution lies in everyone coming together and evaluating individual needs. "It’s amazing what people are doing by joining forces and coming together." Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
Certified Financial Planner Rob Wrubel joins Annette Hines all the way from Colorado Springs, Colorado for this episode of Parenting Impossible. Rob focuses on financial planning for families with special-needs members. It’s a community familiar to him both professionally and personally. Rob is the father to three children, including his 17-year-old daughter Sarah who has Down Syndrome. He is also an author and has written books titled, "Financial Freedom for Special Needs Families," as well as "Protect Your Family, Life Insurance Basics For Social Needs Planning." Rob is getting ready to release a new book titled "Special Needs Trusts in 30 Days." During part 2 of Annette’s interview with Rob, they focus on the topic of life transitions. It’s a subject that’s near and dear to Annette’s heart and one she’s extremely passionate about. Rob is a huge advocate of preparing for the many transition periods special needs families will navigate throughout their lives. "I wish I had a great answer; here’s a list of things one through 12 and this is how it goes, but every family is so different," says Rob. Later, Rob and Annette get into a discussion about being proactive when it comes to planning for the future. While it’s great to take in information and learn, it’s even more crucial to take action according to Rob. " Take solid steps, have the building blocks in place and life will be better. Think about what you can do today, a month from now, or a year." Finally, Rob suggests making time for yourself. He recommends getting out a pen and paper and creating a list of what you really want out of life. He advises prioritizing those ideas and dividing them into areas like financial, family, and career goals. Rob also stresses the need to put together a great network of people who can help you along the way. "Take the time to say, this is my time, and these are the things I want to change." Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
Certified Financial Planner Rob Wrubel joins Annette Hines all the way from Colorado Springs, Colorado for this episode of Parenting Impossible. Rob focuses on financial planning for families with special-needs members. It’s a community familiar to him both professionally and personally. Rob is the father to three children, including his 17-year-old daughter Sarah who has Down Syndrome. He is also an author and has written books titled, "Financial Freedom for Special Needs Families," as well as "Protect Your Family, Life Insurance Basics For Social Needs Planning." Rob is getting ready to release a new book titled "Special Needs Trusts in 30 Days." During the show, Annette asks Rob to open up about his feelings surrounding the difference between the way mothers and fathers cope with the challenges that come with raising a special needs child. Rob shares the story of his daughter’s birth and how the first year of her life came with a lot of emotional struggles. "The nurses were happy to see me, and I was a little surprised about why," recalls Rob. "I heard from them, that when kids are sick, Dad’s often don’t show up, they disappear." Annette and Rob also discuss what life is like for him as a divorced Dad with 50/50 custody. Rob admits that while he and his former wife have different opinions on topics like which therapies and interventions may be best, ultimately living separately has helped them work as a team. Rob follows the motto, "my household, your household," meaning they accept the fact they do things differently. Later, Annette and Rob dig into some of Rob’s thoughts and fears about his daughter’s future. "I try not to get bogged down with not being able to fix everything," says Rob. "I try not to exclude the possible."
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
In our Father’s Day edition of Parenting Impossible, The Autism Dad Rob Gorski and Annette discuss what it’s like being a single Dad to three sons with autism and a well-known voice in the special needs community.
Rob’s journey started when his son Gavin, now 20, was diagnosed with autism. Not knowing how to cope with the diagnosis, Rob started what he calls a "virtual diary" in 2010. This "virtual diary" or blog was a way to write what he was feeling, but he didn’t really know how it worked or that people could find what he was sharing online. Every time he published a new article, it was a way of releasing his raw emotions and moving forward. According to Rob, his blogging began to evolve when he realized not only were his words helping himself but also others in similar situations.
During Annette and Rob’s discussion, they address their thoughts about why Mothers tend to be more vocal in the special needs community. In fact, this episode is the first time Annette has interviewed a father of a special needs child. The Autism Dad also expresses why he’s so passionate about sharing his journey with his sons. "The only way the world is going to understand what our kids need is by telling people. If we don’t talk about it, there are only a few voices speaking for everyone."
Later in the podcast, the pair discuss a number of obstacles Rob has faced while raising his sons including divorce, fear, and facing his own mortality. "I realized someday I’m not going to be here to help," says Rob. "You go through a grieving process. You have your whole life planned out and all of sudden you’re going through the unknown and don’t know what to expect."
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
The Autism Dad, Rob Gorski website https://www.theautismdad.com/
EP 55: Inside The Mind Of Autistic Author Ido Kedar
In this episode of Parenting Impossible, Annette introduces us to 23-year-old Ido Kedar and his mother Tracy. Ido wrote his first memoir, "Ido in Austismland: Climbing Out of Autism’s Silent Prison," as a young teenager. The book had a huge impact on the lives of people with autism and their families. It’s also successfully challenged members of the professional community to look at autism theories with fresh eyes. Ido spent the first seven years of his life locked in silence with no means to show his intelligence. Now, he communicates by typing on an iPad or keyboard, and by pointing on a letter board.
Ido begins his interview with a powerful statement about his mother and the importance of having an advocate. Annette and Ido discuss how his mother Tracy’s persistence about his ability to understand words was an integral part of his journey to becoming a writer. Despite what medical professionals told her, she continued to push for opportunities for Ido to express himself.
Ido believes he was born a writer even though autism specialists didn’t think he could understand words for years. He was finally able to put his thoughts into writing at the age of 12 and published his first book, "Ido in Autismland" just a few years later. The book consists of dozens of short, autobiographical essays offering new insights into autism symptoms, treatments, and the inner emotional life of a severely autistic boy. Ido challenges what he believes are misconceptions in many theories that dominate autism treatment today.
Later, Annette and Ido share more about his newest novel, "In Two Worlds." The fictional story is about seven-year-old Anthony’s journey of discovery and freedom. The character can not speak or communicate his thoughts, and no one has any idea of his true intelligence. He’s locked inside himself and this sharply divides his life between his inner and his external world. It’s not until Anthony turns 16 that a new teacher helps him discover how to communicate.
The young author also shares three important tips about living with autism. Number one, skills can improve with practice and determination if you just believe in yourself. Number two, if you’re on the journey towards communicating, let the world hear what you have to say. And number three, make peace with your diagnosis, you can’t change it but you can accept it.
For more information about Ido Kedar: http://idoinautismland.com/
For more information about how to purchase his books: http://idoinautismland.com/?page_id=213
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
In this episode of Parenting Impossible, Annette interviews longtime friend and licensed Independent Clinical Social Worker Kate Morrison. Kate specializes in working with families, children, and adults with Autism Spectrum Disorders, Intellectual Disabilities and Developmental Disabilities.
Annette and Kate discuss what services will look like as Day and Residential Programs begin reopening after the onset of the COVID-19 pandemic. They also discuss how funding plays a role in programs moving forward.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
In this edition of Parenting Impossible, we learn more about a historic school that played a huge role in host Annette Hine’s life. Perkins School For The Blind was established 190 years ago and was the first school created for the blind in the United States. Perkins’ best-known student, Helen Keller, flourished while studying at Perkins and is highly regarded around the world for her efforts to assure equal benefits and rights for all people, particularly those with disabilities.
During this podcast, Annette speaks with Perkins Education Director Pat McCall and recalls fond memories of her daughter Elizabeth’s time spent at the centuries-old school. Elizabeth passed away from Mitochondrial disease in November 2013 at the age of 17. "Perkins was Elizabeth’s favorite place in the world, nevermind Disney World, she always wanted to be at Perkins," according to Annette.
Later in the show, Annette and Pat talk about how the COVID-19 pandemic has changed the way students are learning, and the most difficult obstacle the staff had to overcome. "One thing I thought was so amazing, was showing the parents and caregivers how to teach at home," said Pat.
Pat and Annette also touch on how the pandemic will forever change the way students learn in the future. "It’s taught us how to better incorporate technology into programs, and we’re better educators because of this," according to Pat.
In honor of Elizabeth’s birthday on May 31st, Annette is matching every donation made to Perkins School For The blind(up to $5,000) through June 14th, 2020.
Click the link to learn more and contribute to this fundraiser: https://support.perkins.org/give/262020/#!/donation/checkout
In this episode of Parenting Impossible, Annette looks back at what inspired her to start this podcast last September. Annette’s vision was to create a space where people could come together and talk about issues affecting the special needs community. It was all in honor of her daughter Elizabeth, who passed away from mitochondrial disease in 2013.
Despite the pain, Annette learned the importance of remembering the joyful moments. While it’s not easy to talk about, Annette hopes her loss will become a source of strength for other special needs families. This week, as Annette’s family and friends remember Elizabeth on her birthday, May 31st, we take a moment to reflect on a podcast that highlights Annette’s brave journey.
The Power of Storytelling - Seek The Joy Podcast - Episode 24 https://www.seekthejoypodcast.com/show-notes/powerofstorytelling24
December 10th, 2019:
"This month’s episode reminded me that we all have struggles in life, and when we choose to honestly share our own stories - the highs and lows, ups and downs, moments of difficulty but also of triumph - we can create a path forward we never anticipated. But even more than that, we can help and inspire others to pave a new path forward for themselves, too.
It’s truly my honor to share the stories and provide the space here to share a little bit more about the women behind these words.
Annette Hines is a best-selling author, lawyer, and the founder of Special Needs Law Group of Massachusetts, PC. Her world as she knew it exploded when her infant daughter Elizabeth was diagnosed with mitochondrial disease—a degenerative, life-limiting illness. Annette’s joy quickly turned to apprehension, and she knew nothing would ever be the same again.
In this week’s new episode, Annette shares her journey with her daughter Elizabeth and learning to become an advocate in the face of adversity, but also in joy. In her book, Butterflies and Second Chances, Annette shares her family’s story and provides hope and inspiration to so many; it’s the inspiring true story of a mother’s special needs journey, and her struggle to secure the best possible life for her child in the face of bureaucratic resistance and marital crisis.
When Annette first started writing, she wrote the book for herself. She hadn’t connected yet with other parents who had lost children to illness, and that was an amazing turning point for her. She realized that she was creating an incredible tool that could help other families who are experiencing the same hardships - and watching the impact that her journey and book are having on others has been incredible. Annette’s story is one of sacrifice, dedication, and the life-altering adjustments a special needs parent must make when confronted with the unthinkable. But most of all, it’s about love and an extraordinary mother-daughter relationship that flourished without words in the darkest shadows of adversity. Annette and Elizabeth’s powerful story provides hope, solace, and a path forward for parents of special needs children, and I know that it will resonate with you, too.
"Through sharing my story I’ve learned that there are a lot more people out there that feel like I do, that feel lonely or disconnected and scared. For me, the answer was always connecting with other moms, parents, and community members who are going through similar things that I was going through. I want to create an army of advocates, well-informed family and community members that are going to advance the disability community."
— ANNETTE HINES
In this edition of Parenting Impossible, Annette speaks with a very special guest, her husband and business partner, Mark Worthington. Mark is Senior Counsel at Special Needs Law Group of Massachusetts and is a Professor of Law at Western New England University School of Law. He has also been named to the Massachusetts Super Lawyers list every year since 2008.
Annette and Mark begin with their perspectives on a topic they’ve been hearing a lot about from community partners, clients, and within their own social circle: the importance of having your legal healthcare decisions properly documented. During the COVID-19 pandemic, the healthcare system’s procedures have drastically changed, preventing people from getting in touch with loved ones that may be hospitalized or in assisted living facilities.
They begin by breaking down the difference between having a Healthcare Agent set up or guardianship in place. While both give others the legal right to make decisions regarding healthcare, the process and powers vary. Mark also explains why it’s so crucial to have these documents in place before a pandemic or tragedy strikes.
Annette and Mark then jump into the world of HIPAA authorizations, which is consent from a patient to release information to authorized individuals. Without this legal authorization, the hospital or medical facility will be fined. While these authorizations hold no decision making power, Mark explains why they are essential for family members.
Finally, the couple dives into a discussion on living wills and what they really entail. They also give advice on how to decide who to choose for these types of documents and where to go if you don’t have someone you trust.
Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.
It’s been months since many of us across the nation have had to change our way of life. It’s a difficult time for everyone, but having a child with special needs comes with additional obstacles.
In this edition of Parenting Impossible, Annette speaks with licensed clinical psychologist Dr. Sharon Saline. Dr. Saline is a top expert on ADHD, anxiety, learning differences and mental health challenges and their impact on school and family dynamics.
Annette and Dr. Saline begin their conversation with a discussion about school cancellations and the added difficulties children with neurodiversity are facing during these unprecedented times. Some of these issues include missing their friends, lacking classroom cues from other students, and harboring feelings of anxiety, hopelessness, and anger.
Dr. Saline also shares her thoughts about creating a long-term plan and the importance of accepting the lack of answers available to us right now. She gives suggestions about ways special needs parents can navigate through this pandemic, especially with kids who are neurodiverse. It’s crucial to take into consideration, neurodiverse children need more help along the way, and that requires positive feedback.
Annette and the doctor also touch on the importance of self-care and what it really looks like. Dr. Saline stresses the need for parents to first help themselves before helping their children. People are living online today more than ever, and that comes with a lot of judgment and self-doubt. Limiting your interactions on social media is just one way to prevent getting sucked into negativity energy according to Dr. Saline.
You can learn about Dr. Sharon Saline https://drsharonsaline.com/about-dr-saline/bio-press-kit/
In this edition of Parenting Impossible, Annette talks with The Arc of Massachusetts Executive Director Leo Sarkissian and Policy Officer Ellen Taverna about issues affecting the special needs community during the COVID-19 epidemic. The mission of The Arc is to enhance the lives of people with intellectual and developmental disabilities and their families, which includes community support and services fostering social inclusion and equity across all aspects of society.
Ellen begins the podcast with an update about how The Arc is keeping the special needs community informed on changes to policies and services while so many are self-quarantining across the nation. She touches on how government-funded relief packages are being distributed when it comes to paid leave for caregivers.
Annette and Leo dive into why the disability community is being disproportionately impacted by COVID-19, and what’s happening when someone with special needs has to visit a hospital. Leo addresses some common concerns like, what you should do if you find yourself in this situation, and what you should say if you’re not allowed to accompany that person.
Annette, Leo, and Ellen also discuss the challenges of a friend or family member currently living in a group home. They breakdown the frustration about not getting the details of what’s going on inside, and what The Arc is doing to help. Leo offers advice about how to get the answers you need and who you should turn to if you’re worried.
They also share how The Arc is helping special needs families across the nation which includes their COVID-19 webpage. According to Ellen, the site is constantly updated as things evolve regarding the impacts on healthcare, daily life, financial matters, and more.
Links
https://specialneedscompanies.com/blog/
https://specialneedscompanies.com/ep-46-parents-how-to-be-your-childs-best-advocate/
https://specialneedscompanies.com/ep-47-keeping-your-plan-updated/
Annette’s podcast journey takes her all the way to the United Kingdom this time as her guest this week is Giuliana Wheater. Giuliana is an author, award winning therapist, teacher, trainer, public speaker & fundraiser. She is Founder of Therapies for Special Needs and Rainbow Kids Touch Therapy & Relaxation. She is the author of the book, Indian Head Massage for Special Needs.
Giuliana first introduces listeners to her son Ollie who is on the autism spectrum and has a talent for the written word. She took opportunities from her own experiences to go into to teacher training days in the UK and help those teachers have a better understanding of students like Ollie. Giuliana also discusses why she wanted Ollie to gain skills to be independent and she outlines why that was important in the podcast. She discusses why it was important to treat him like any other person and she talks about his incredible ability to write and craft stories.
Giuliana speaks about her views on inclusion in schools. She says while she is a huge advocate for inclusion, every child is different, and each student requires a different education according to their specific abilities and needs. She makes it a point to say that she has never given up on any child and no one should. Children should not be defined by any label. And she shares a very special story about Ollie’s doctor and how both Ollie’s life and his life were changed by the relationship.
She talks about her different therapies for those with special needs including many that are now online because of the COVID-19 crisis. She offers meditation, yoga for autism as well as ADHD, relaxation therapies as well as sound therapy. She talks about the power of storytelling as well as the power of touch to help us through stressful times.
You will find that Giuliana is incredibly passionate about what she does and cares deeply about helping others in this world of different abilities.
You can find Giuliana at her website: https://www.therapiesforspecialneeds.co.uk/
Find more about her therapies online here: https://www.facebook.com/groups/rainbowtherapieskidsandfamilies/?ref=share
https://www.facebook.com/akoautismexpo/
Annette takes a few minutes at the beginning to update listeners about social security during the COVID-19 crisis and what you can do to access your benefits as well as get answers from the social security office. As of the date of this podcast, the offices are closed due to the Coronavirus outbreak. Annette suggests setting up an account online with social security so you can access certain information. She offers tip for navigating the system during this time.
Annette on this podcast talks about how to keep your planning updated for times of crisis and beyond. The Coronavirus crisis has caused many to take a step back and take a deeper look at their planning. Your plans always need to be buttoned up and, up to date but never more important than when the country and the world goes into a crisis.
Annette runs through some of the most important items you need to be thinking of in your special needs planning. The first item she points out is to make sure you have a will and to make sure it is up to date. But it may not be the most important document in your plan.
One of the more important items you should be looking at are incapacity documents. These are your healthcare proxy, power of attorney and your HIPA releases. But keep in mind, these documents are dictated by state laws and should be updated if you have moved. Annette goes through these documents in more detail in the podcast.
The next item is guardianship and as Annette points out, this is different in every state as well. For example, standby guardians or backup plan can be different depending on the state so it is important to find out how state laws outline this. It is a good idea to speak with your attorney about guardianship for the best advice.
Annette talks about having your trust planning in order. And specifically, special needs trusts. Laws may not have changed but the way public benefits can change over the course of time so it is important to revisit this document over time.
Annette also discusses the Letter of Intent as another important document you should have. Everything from healthcare wishes, other wants and needs and specific directions should be in this letter. These are for anyone you have caregiving responsibilities for. They are wishes you have for your special needs loved one.
Want to ask Annette a question? Find her at: https://specialneedscompanies.com/
Annette is back and talking about special needs advocacy with Leslie M. Leslie, project director for The Federation for Children with Special Needs based in Massachusetts. This is an important podcast about parenting, special needs and advocacy.
Annette and Leslie discuss the importance of advocating for what you feel you need for your special needs child and they discuss important tips to remember when advocating as well as ways to make meetings with administrators and others more effective.
Leslie takes listeners through her top tips for effective advocacy for your special needs child.
She says to know who you are talking to when you get into meetings such as IEP meetings and educate yourself on how that system works. Also, when it comes to knowing who is at the table, find out if that special education director is an attorney because it is becoming more of a trend.
Leslie says to try hard to build relationships with everyone regardless of the situation. That also includes meetings about healthcare where you may need to be an advocate.
Take time to listen carefully and know exactly who in the room is authorized to make any decisions for your child.
Leslie says to be the expert on your child and the situation. Always know what you are walking into if you can. You should be the one that knows your child best. And do everything you can to not go into any meetings with administrators alone.
Leslie also advises listeners to get creative with solutions. For example, can you or your insurance company purchase needed equipment for your child to use in school and then take it home for further use? Annette points out that you have more answers than you think you have, so create solutions.
Effective communication is vital to advocating properly for your child. Watch the tone of your voice and ask administrators to explain anything you do not understand and always be courteous. Be a problem solver and be prepared to focus on the goals rather than letting emotions take over a meeting.
Leslie and Annette also make a point to let listeners know that you should be prepared to make arguments to reach your goals but always stay positive. In the end, know that teachers and administrators are trying hard to meet your goals for your child and that compromise may be a solution.
Learn more about The Federation for Children with Special Needs here: www.fcsn.org
The Center for Appropriate Dispute Resolution in Special Education as Leslie mentioned is here. https://www.cadreworks.org/
On this episode of Parenting Impossible, The Special Needs Survival Podcast, Annette talks with Leslie M. Leslie of The Federation for Children with Special Needs to discuss how to be more involved in the education process as a special needs parent. Leslie serves as the Project Director for the MassPAC and APPLE projects at the Federation for Children with Special Needs. She provides technical assistance to both Special Education Parent Advisory Councils (SEPACs) and school district special education administrators.
Leslie and Annette discuss how emotions can and do run high when it comes to advocating for your special needs loved one in the education system. The makeup of families has changed over time and language barriers can sometimes be just one of many issues in the way of effective communications with a school district.
Leslie speaks to the power of parent advisory groups and how collectively, the groups can inform administrators what they feel is working for special needs students and what they feel could be improved on. But she feels that more states need to get help to set these groups up in school districts.
Leslie and her team help parent volunteers set these groups up, advise them on how to formally advise a school district and also advise them on open meeting laws as well as other ways to improve the networks. These groups she says bring an important voice to the table.
She wants to ultimately have parent groups build trust with the school administrators while respecting the role of the educators.
Leslie also takes time to discuss what should be discussed through these groups and what needs to be addressed in private. General topics of student services should be private while issues concerning bullying, transportation or other systemic issues can be addressed through the group to the district.
Leslie takes time to walk listeners through a few basic tips on how to start a parent advisory group. She says you need to start a conversation with the school system, sit down with other groups such as school committees and follow other states that have had success in this area. Educate yourself on special education laws and make sure the school district understands the importance of inviting parents to the table for these discussions.
You can learn about the Federation for Children with Special Needs here: https://fcsn.org/
To find your local state parent center
https://www.parentcenterhub.org/find-your-center/
https://www.parentcenterhub.org/the-parent-center-network/
National Guide to Local Special Education Parent Advisory Councils
https://sepacguide.parentcenterhub.org/
Advocating for your special needs child in school or as a young adult in their transition years is something just about every special needs parent will have to do. In this episode of Parenting Impossible, Annette talks about how important it is to advocate properly for your loved one.
Her guest this time is Ellen Chambers. Ellen has devoted her career as an advocate by helping families, educators and agencies secure proper special education services for school children with special needs. Ellen is also the founder of SPEDWatch, an organization in Massachusetts that works to make sure all special education students are provided with the education they are legally and morally entitled to.
Ellen talks about IDEA which is the Individuals with Disabilities Education Act and how it is aimed at ensuring all students with disabilities have a free and appropriate education. Much of her work is based off this law that was passed in 1975. It ensures education as well as extending beyond academics.
Annette and Ellen also discuss that when working with your school system, they should have a plan in place to ensure a proper education and that it should at some point, include post-secondary goals to prepare your student for transition. That includes basic living skills, employment and the training to gain meaningful employment.
Ellen says that there are still some school districts that do not understand their legal obligations and it is up to you as an advocate to be aware.
Ellen and Annette talk about your rights to have an independent evaluation of your student’s program and that you also have the right to choose your own evaluator. You can request that the school district pay for that evaluation as well. But be careful because the school district does not have to agree with the final outcome of that evaluation.
Ellen offers listeners her top tips for advocating for your student and young adult. She says to make sure you understand your child’s abilities and disabilities, strengths and skills that need more attention. Build a strong independent clinical team for your loved one. Also, know how the system works, know your rights and know when to exercise those rights.
She also says it is important to behave in a professional manner when dealing with your school system. Tensions can run high at times, but it is important to stay calm whenever possible.
And she says, let your child develop at their own pace.
If you need some advice on how to advocate for your special needs loved one, this is a great discussion.
You can contact Ellen Chambers at: emchambers123@gmail.com
The IDEA website with many resources can be found here: https://sites.ed.gov/idea/
Annette takes on the topic of discrimination against caregivers of those with special needs in this podcast episode. This podcast being aired during the 2020 COVID-19 crisis, it’s a very timely topic as many of our special needs caregivers are uncertain about their employment future.
Rebecca G. Pontikes, is Annette’s guest and is the founder of Pontikes Law, LLC. She represents employees in all areas of employment law, specializing in gender and family responsibility (caregiver) discrimination, sexual harassment, negotiation of employment contracts and separation agreements, noncompetition agreements, retaliation and whistleblower claims (in all sectors, including the government and financial sectors), violations of the Family and Medical Leave Act, and violations of the wage statutes.
Rebecca starts out by talking about how many of these issues arise out of what she calls “loose lips” comments by an employer. An employee talks about a different work arrangement due to caregiver responsibilities and an employer makes a comment that sets off a red flag for some. Someone may also inquire about family medical leave and could be put through a humiliating experience.
Rebecca and Annette also discuss stereotypes for both men and women and Rebecca points out that stereotypes are illegal when it comes to employment. She discusses how most caregivers are covered under the ADA and how many states as well as cities have implemented their own set of laws and regulations regarding family leave and caregiver responsibilities.
Rebecca suggests as a resource to look at a number of avenues such as the Human Rights Commission in your state as well as www.Worklifelaw.org which has resources for caregivers and others.
As far as laws regarding family leave and unemployment, it can vary by state and by the size of the business, so it is a good idea to understand this and do your research.
But what can happen during a crisis such as COVID-19? Rebecca says you need to understand current unemployment benefits, job protections and stay up to date on these fast-moving laws and understand coverage for hardships can change. You need to stay on top of the news to know how your state is handling the crisis and what legislation is being passed.
Rebecca also has tips for those who may be in a situation where their employment has stopped due to COVID-19. She makes very clear that you still have rights and that family medical leave is the law. Go get unemployment benefits in motion as soon as you can and notify your employer that you understand you have those rights. Also, understand that some of the same workplace accommodations are still relevant even if you are working from home. And that you could be on unpaid leave and still have job protection.
Ultimately though the podcast discusses that we are all community and we need to act as one.
You can find Rebecca at: www.pontikeslawllc.com
This episode of Parenting Impossible, Annette talks about life Insurance. But before you turn away, you need to understand the importance of life insurance in the special needs planning conversation. It is an important topic and vital part of a special needs trust.
Annette’s expert guest for this topic is Janice A. Forgays, an attorney with over 25 years of experience in this area of helping families. She is with the firm PRW Wealth Management and serves as Estate and Wealth Management Counsel.
Annette first reinforces that as a special needs family, you need to have a relationship with a trusted financial professional. It is vital to ensuring the future of your special needs loved one.
Janice first points out that you do need to be careful about choosing life insurance as well as the representative you are working with. Not all people in this industry understand the products fully especially when it comes to special needs planning.
Annette and Janice point out that life insurance can be a key component in funding a special needs trust but the way a trust is drafted is very important. It needs to be drafted by a professional with experience and knowledge in special needs.
Janice takes time to discuss the ways in which term insurance, whole life, variable life and universal life insurance differ in both protection as well as price and when you should purchase such products. Janice also makes an important point that each day you wait to purchase life insurance, the more it can cost you.
They wrap up by discussing what a survivorship policy is as well as the benefits that come with implementing this type of insurance policy.
Life insurance is a topic you need to understand and a discussion you need to have as a special needs family.
You can connect with Janice at her website here: https://prwwealthmanagement.com/
Annette takes this podcast episode to answer some questions from listeners about special needs planning. Many questions come in from her dedicated podcast fans about all types of topics related to special needs planning, law and other important topics.
Annette first takes a minute to recognize that many in the special needs community are concerned about the Coronavirus as some may be more vulnerable than others. Annette and her team at Special Needs Law Group are doing everything they can to provide comfort as well as any type of guidance they can as we all acquire more information.
The first question Annette covers is how to name individuals in various documents such as trustees, guardian, power of attorney, or heath care proxy. These people can be for yourself or for a family member such as a special needs child. She talks about the importance of these roles in special needs planning and how to have this conversation with these people.
A question related to her first question that also came in was, what happens when I ask someone to serve a role and they say no? Annette indicates that a person is not required to serve in any role in a special needs plan. It is an individual choice. A person nominated for a role still needs to agree to that role. Annette answers the question about what happens when a person that has been nominated, is no longer fit to serve that role.
Annette talks about letters of intent where a person needs to notify that person that they have been nominated to be a trustee or guardian. How should you go about doing that and what you need to think of. Letters of intent also inform people about your wishes for your loved one. Some of these wishes are simple and some more complex.
Annette also answers the question the difference between an ABLE account and a special needs trust. She points out and explains the two are very different.
Learn more about how Annette and her firm help special needs families through these issues and challenges. https://specialneedscompanies.com/
Annette goes “live” in this special podcast episode. She takes the microphone and heads out to the Federation For Children With Special Needs Conference in Massachusetts to talk with folks about a number of topics important to the special needs community.
Annette speaks about the topic of transition planning which she has covered before on the podcast with various trusted experts. Part of being a special needs parent is understanding and going through the transition process as your loved one approaches the age of 22.
What are the most challenging parts of the transition process as well as what are people’s thoughts on larger communities for those with special needs as well as group homes? And why hurry up and wait is part of the process. Other families discuss their challenges and concerns about the transition process.
Annette talks about trusting and relying on our school systems to educate and advocate for our special needs loved ones properly. What happens when the relationship between parents and schools gets comprised and what can we do about it?
Annette also has a discussion about person-centered planning and how important that is to the overall plan for your special needs loved one.
And she speaks with siblings and their experiences in helping out the family from finding a job, job training and more. She also speaks about helping that family member that may not speak English as a first language and how to attain special needs services.
Find out more about the Federation For Children With Special Needs here: https://fcsn.org/
On this episode of Parenting Impossible, Annette sits down with Yariela Brandao, founder of byond 22, an organization that helps the families of young adults in their transition years. byond22 recognizes that there is a great need for many individuals with disabilities that need assistance transitioning from special education to adult services.
Yariela has taken her years of advocating for her own daughter who is deaf and blind and used her knowledge and passion to help others through these challenging years of transition as well as succession planning.
Annette and Yariela have many life experiences in common which you will hear on the podcast.
Yariela speaks about coming to the United States from Panama with her daughter and enrolling her in The Perkins School in Massachusetts. While it took many adjustments and work, her daughter finally got comfortable with her surroundings and began to make progress. However, the topic of transition to adulthood at age 22 came up and Yariela began to feel that pressure and uncertainty.
There was a period of time where Yariela admits she ignored the issues she was facing but there came a time where she began to gain strength and confidence in her own abilities to take this challenge head on and advocate for her daughter and what was ahead.
She says the first step is to recognize that the issue of transition is not an option and you will have to take it on. Change is coming whether we like it or not and you have to be a part of it.
Yariela also says that for her situation, that she needed to have certain goals and objectives in place to make sure she was getting the right results and future for her daughter. She laid out specific goals such as living arrangements and how close she wanted her daughter to be to home and began that process.
Yariela and Annette discuss some of the other actions she took to ensure her daughter would continue to transition well into adulthood and beyond.
She wraps up by talking about all the assistance that byond22 provides families and the resources that are available to anyone on the organization’s website.
Find out more about byond22 and find some of those valuable resources on the website.
http://byond22.org/
Annette kicks off part two of her interview with Dr. Sharon Saline, a licensed clinical psychologist, a leading expert on ADHD and the author of the very popular book, What Your ADHD Child Wishes You Knew.
This time, Annette and Dr. Saline discuss executive functions, how to understand them better and how to maximize these critical life skills for your child with ADHD. Dr. Saline says that for many with ADHD, autism or other learning challenges, executive functions can be challenging to manage.
Dr. Saline talks about some of the 11 executive function all humans should have including working memory, emotional control, attention, planning and organizing as well as time management and meta cognition.
She says that technology has played a role in the challenges we face with executive functions and she says that when we are tired, that’s when our executive functions suffer the most.
Annette and Dr. Saline discuss executive function coaching and the pros and cons of having the parent conduct this with their child. If it does not go well, it may be best to hire a professional and she talks about how to find a good match.
And Dr. Saline discusses the important topic of shame in this episode which can be a major challenge with the neurodiverse population. Shame as she indicates is related to low self esteem and feeling bad about who you are and some of the actions you have taken. She says shame teaches us nothing and is sometimes related to feeling not accepted.
Dr. Saline also takes time to discuss anxiety and how this can foster a depletion of your coping skills.
She ends her episode with Annette and reinforces that positive self-talk is a key component in helping your child with ADHD and that you cannot forget to celebrate the positives.
You can find Dr. Sharon Saline including a link to her book here: https://drsharonsaline.com/
Annette talks about how to be a great parent of a child with ADHD this week. Her guest is Dr. Sharon Saline, a licensed clinical psychologist, a leading expert on ADHD and the author of the very popular book, What Your ADHD Child Wishes You Knew.
Dr. Saline first discusses what ADHD actually is and walks listeners through what it takes to accurately diagnose a person whether they are a child or an adult with ADHD. She says that the symptoms that are used to diagnose a child versus and adult can be different depending on the age. She mentions that ADHD can change over time as we get older.
Dr. Saline talks about how she came up with the title for her book. As she spoke with both children with ADHD and their parents, she realized that not everyone was on the same page and there was a disconnect in many cases. Children she spoke with said that they really wished their parents would meet them where they were in life and try to get a better understanding of ADHD as well as offer more compassion and focus on the positive things they accomplish. But she says that sometimes, honest conversations can lead to chaos.
Dr. Saline goes through her five C’s for being a better parent to a child with ADHD.
The first is self-control and that goes for both the parent and the child with ADHD. Everyone involved needs to know how to better manage feelings.
Compassion is the second on the list and once again, taking into consideration both child and parent. She says it is important to meet your child where they are.
Collaboration is next and involves letting the child have their say in matters they care about. Do not always dictate how things are going to go. They need to be part of the process.
Dr. Saline says consistency is key to parenting a child with ADHD. In short, do what you say.
Her last tip is celebration. We must as parents, celebrate the wins of our “out of the box thinkers.”
Dr Saline shows her expertise in this area and gives listeners some key takeaways at the end of this podcast on ADHD.
You can find Dr. Sharon Saline including a link to her book here: https://drsharonsaline.com/
This week, Annette talks about the stress, challenges and hardships of caregivers and parents of those with special needs. Her guest to discuss this important topic is JK Whisenant.
JK provides counseling in a diversity-based practice to adults providing individual and couples therapy, small groups and psycho-education/training. JK treats parents and caretakers of special needs populations helping them navigate through the accompanying stress, depression and anxiety.
Annette and JK discuss just how critical it is for someone who is a caretaker or a parent of a person with special needs to make sure they take care of themselves, both mind and body. Often times, people do not take good care of themselves and the result can be devastating.
JK walks listeners through some of the signs of stress including no sleep, or, too much sleep or your eating habits are suffering. Thoughts can be out of control such as wanting to hurt others or hurt yourself. Anger and rage are part of the clear signs. And JK says that when you are afraid of your own feelings, that is a clear indication of too much stress. JK also states that if you are human, you need help.
JK says that you need to be careful of comparing your life in any way. That includes comparing yourself to others and comparing your special needs loved one to others with special needs.
JK talks about how to find a qualified therapist that can help guide those who take care of individuals with special needs and cautions listeners to go into a relationship with a therapist carefully. She has tips for making sure they understand special needs and how to make sure they comprehend parents and caretakers and how you deal with taking care of others with disabilities.
And JK talks about her tips for self-care including breathing, mind and body, connecting with other parents and finding the right groups to join for support.
If you as a parent or caretaker have felt stressed out and alone in any way, this is a must listen to podcast.
JK's Blog https://gshcounseling.blogspot.com/
Email gshcounseling@gmail.com
You can find JK on LinkedIn and Twitter.
http://linkedin.com/in/gshcounseling
https://twitter.com/gshtherapist