ABCs of Disability Planning

This is the last episode of the ABCs of Disability Planning podcast. Thank you for listening.

I reached out to Dr. Saquib Lakhani and his collaborator after reading about their discovery of the Jeffries-Lakhani Neurodevelopmental Syndrome (JELAN). Dr. Lakhani agreed to be my guest. This conversation is about a possible future for those born with a rare disease. I had no idea the numbers were so high, 8 - 10% of the U.S. population has a "rare" disease. I would guess these numbers are highe...

Doug Blecher founded Autism Personal Coach in 2013 in response to the near-total lack of real-life support for Autistic adults.   In 2022, Doug officially confirmed his suspicions about his neurotype. APC is now happy to confirm they are fully Autistic-led (and have been all along)!   All of their autism life coaches are either Autistic or chosen by Autistics. We choose them based on their commitm...

Routine Success is a mobile application supporting the independence of neurodivergent young adults. Build routines to prompt users as needed. Schedule these routines to notify the user at the appropriate times. Schedule routines to repeat on a daily, weekly, or monthly basis as needed. The calendar view provides a quick overview of the day to come. Users can start routines early. Specify when remi...

ECR Planning offers professional support to families needing to access long-term care Medicaid benefits in their loved one’s state. Step 1 Meet with one of ECR's expert Benefits Advisors to determine eligibility and decide if it makes sense for your family to hire a Medicaid planner. If working with them is the right fit, you will move on to the application process. During this call, you may decid...

The Undiagnosed Diseases Network (UDN) is a research study funded by the  National Institutes of Health . Its purpose is to bring together clinical and research experts from across the United States to solve the most challenging medical mysteries using advanced technologies. Through this study, we hope to both help individual patients and families living with the burden of undiagnosed diseases and...

NavigateMD provides a one-of-a-kind service to those with disabilities, their families, and others. Their platform connects these individuals with medical providers, businesses, non-profit organizations, and other resources that meet their needs. They understand that finding the help you need can often feel like a full-time job, resulting in high-stress levels and feeling overwhelmed. NavigateMD s...

Partners4Housing believes housing is the foundation of a good life. They are creating shared living solutions for adults with disabilities across the United States. They help you navigate the complex service agencies and secure housing for your loved one. Their Products: Benefits & Housing Review Roommate Matching Pool Shared Living Development Consulting Services Resources mentioned in the ep...

SimplyHome’s remote direct support professional (rDSP) solution helps you give more people access to greater independence. Whether you are looking for ways to expand capacity or better support your existing care teams, SimplyHome's new remote DSP solution provides real-time connectivity to real people. It’s a simple way to confidently accomplish more while providing exceptional care. Both provider...

Real Life Access works with organizations to increase their bottom lines by making products and services accessible to people with disabilities -- and user-friendly for everyone. They provide: - accessibility courses, training. and consulting - website audit and remediation. They can find and fix issues preventing people with disabilities from accessing your website. - Public speaking about the im...

RightHear provides talking signage so everyone can interpret and understand their surroundings in real-time.   The environment comes to life through audio descriptions delivered directly to a smartphone or tablet. Helping everyone, everywhere explore, navigate, and experience the world safely and independently. RightHear’s solution works both indoors and outdoors.  It supports any industry, sector...

The Experiential Life App brings together parents and caregivers raising neurodivergent kids through community, webinars, parent support, and downloadable resources, all contained in a convenient app on your favorite device.  Webinars with professionals and neurodivergent people Learn from the experts in real-time, or binge-watch the webinars at a time most convenient for you. Downloadable resourc...

What is Dravet Syndrome? Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare form of intractable epilepsy that begins in infancy and proceeds with accumulating morbidity that significantly impacts individuals throughout their lifetime. It has an estimated incidence rate of 1:15,700 Enter the Dravet Syndrome Foundation (DSF). DSF is a nonprofit organization that ac...

Mad Hatter Wellness creates a comprehensive sex ed and health curriculum that educates and empowers people with intellectual disabilities and their support systems. They work with people of all abilities and specialize in health and sex education for people with intellectual and developmental disabilities. They train families, caregivers, educators, and direct support professionals. For the past 2...

‘Arrows’ was founded to empower autistic people's social skills, workplace integration, and personal independence and well-being. Arrows' first product on the journey towards inclusion is the ‘Skill Coach’, a SaaS software for learning and practicing social skills through realistic conversations with avatars based on Generative AI technology, which is grounded in a leading international pr...

The College Autism Network links varied stakeholders engaged in evidence-guided efforts to improve access, experiences, and outcomes for postsecondary students with autism. ADVOCACY: CAN empowers college students with autism by amplifying their voices within the academic community and providing free access to materials to facilitate their successful transition into, through, and out of college. RE...

Givers hires, supports, and pays family caregivers. Are you caring for a loved one? See if you qualify to get hired, supported, and paid by Givers in 60 seconds. State-by-State Compensation Guide: https://www.joingivers.com/how-to-get-paid-caregiver Connect to learn more: Website: https://www.joingivers.com/ Facebook: https://www.facebook.com/joingivers/ X: @joingivers IG: @joingivers LinkedIn: ht...

Christy Nittrouer is a tenure-track, assistant professor in the management area at the Rawls College of Business at Texas Tech University. She earned her Ph. D. in Industrial/Organizational Psychology from Rice University. She has raised over $1 million in grant dollars to support her research on allyship and the experiences of minoritized employees in the workplace from funding sources such as th...

The Autistic People of Color Fund - At the intersections of disability justice, neurodiversity, and racial justice. The Fund practices redistributive justice and mutual aid by returning and sharing money directly to and with autistic people of color. They provide microgrants to Black, Brown, Native, Asian, and mixed-race people in the autistic community for survival, organizing, leisure, and pleas...

Get Relief from Hospital Bills Most hospitals offer discounts or bill forgiveness based on income. On average, a family of 4 earning less than $100,000 a year will qualify.  Dollar For can help you apply — for free. Financial Assistance: Hospitals’ Best-Kept Secret Hospital financial assistance is sometimes called “ charity care .” By law, nonprofit hospitals must offer programs that forgive bills...

Job development, life skills, and fitness for ALL abilities! Kibu offers fun, bite-sized classes in fitness, life skills, community engagement, and job development in an inclusive environment. They offer over 300 pre-recorded video lessons on a variety of topics. Their lessons are designed to be accessible to everyone. They add 2 to 5 new videos every week! Kibu has expanded to include tools for d...

Goodmaps - Mapping the Future with Indoor Navigation. Empowering everyone with the freedom and autonomy to discover the world around them. Creating Smarter Spaces Through Digital Mapping Step 1: Scan your venue Step 2: A 3D Map of the Entire Space Step 3: Edit Your Map Step 4: Find Your Way GoodMaps is a global indoor mapping, positioning, and accessible navigation company that aims to make the wo...

The CEO Commission for Disability Employment is leading the way to an inclusive workforce. It was founded by Voya Financial, the Society for Human Resource Management (SHRM), and the National Down Syndrome Society (NDSS), to advance disability-inclusive employment by inspiring and engaging business leaders to drive change through policy, practice, and culture. The CEO Commission is designed to inc...

What Is KAT? Ketamine-Assisted Therapy (KAT) refers to the use of ketamine in conjunction with facilitated therapy. KAT is a proven treatment for many mental health disorders, including major depression, PTSD, generalized anxiety, and substance abuse.  Ketamine itself is a dissociative medicine that quiets sensory input and can give people a temporary change in their mental perspective. Its origin...

Dr. Geraldine Dawson is the William Cleland Distinguished Professor of Psychiatry and Behavioral Sciences at Duke University, where she is a Professor of Pediatrics Psychology & Neuroscience.  Dr. Dawson also is the Founding Director of the Duke Center for Autism and Brain Development, an NIH Autism Center of Excellence, which is an interdisciplinary research program and clinic, aimed to impro...