Resource Guide for parents and guardians of people with I/DD and Autism

 

 

 
[This appeared as a blog post for the National Council on Severe Autism on 10/30/23]
 

By Harris Capps

I know it can be difficult for parents and caregivers to understand and navigate the disability care system in the U.S. I myself have a grown son with intellectual and developmental disability (I/DD) and have learned a lot over the decades, the hard way. Now I want to make it easier for others.

That’s why I wrote the short book, “Essential Lexicon and Resource Guide.” It’s intended for parents, guardians, caregivers, advocacy and support groups, policymakers, educators, students, healthcare professionals, researchers, social workers and others who want a deeper understanding of our I/DD system in an easy-to-access format. It may be of interest to the reader that there are 21 entries that also provide an “Author’s Reflection” on terms such as “Deinstitutionalization,” “The Olmstead Decision,” and “Supported Decision Making,” as well as on NCSA’s own podcast, Autism Confidential.

The book provides an overview of several areas: I/DD terms, the functions of I/DD government organizations, I/DD non-profit organizations that can help, I/DD-relevant websites, and key books on intellectual and developmental disabilities.

The I/DD Terms section covers a wide range of topics including savings accounts exempt from Supplemental Social Security (SSI) income, autism spectrum disorder, deinstitutionalization, IEP vs. IEPs, self-determination, supported decision making, waiver programs, and Home and Community Based Services (HCBS). The section provides explanations of each term to help readers better understand the complex world of I/DD.

The IDD Government Organizations section provides an A-to-Z guide to the federal agency responsible for I/DD policy. It also includes information on the network of University Centers of Excellence on Disabilities and the 10 resources of the Center for Parent Information & Resources.

The I/DD Non-Profit Organizations section includes important I/DD organizations such as autism organizations as well as the 40-year-old organization advocating for a full continuum of care.

The I/DD Relevant Websites section includes a range of websites that are relevant to individuals with IDD. These include websites that support people with “difficult behaviors,” a searchable index of government agencies, the blog hosted by the National Council on Severe Autism, and even the Disability History Museum.

Finally, the Key Books on I/DD section includes books such as Amy Lutz’s “Chasing the Intact Mind,” (October 2023), the main diagnostic Manual on Mental Disorders, and The Handbook of High-Risk Challenging Behaviors in People with ID.

In conclusion, this reference guide is a resource for anyone looking to deepen their knowledge of the I/DD landscape, from complex terminology to information on government organizations and key commentary.

The book is available on Amazon here.

Harris Capps is a parent, guardian, and advocate for his 47-year-old son, Matthew. Matt resides in an Intermediate Care Facility (ICF). Harris and his family live in Ohio.

Autism Confidential: a podcast from the National Council on Severe Autism

The National Council on Severe Autism sponsors a mostly weekly podcast that is available from the usual Podcast platforms and on Youtube.

I do not have a family member with autism. My two sons, Danny, who died last year at the age of 46, and Ian, who is 38 years old, experienced profound intellectual and severe physical disabilities from birth. My cohort of parents and other family members who care for people with profound intellectual and developmental disabilities are not exactly in the same club with these autism parents, but we are just down the hall, with many overlapping issues and similar concerns about the romanticizing of disability, the inability of many advocates to acknowledge the severity of the most profoundly disabled people, and a tendency to blame parents for making people with disabilities look bad because parents insist on speaking truthfully about their own children.

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From the NCSA website:

"Welcome to Autism Confidential, the podcast from the National Council on Severe Autism. We shine a light on the hottest issues in the world of autism, including topics often shunned by conventional media. Who cares for autistic adults after their parents die? How can we fix our broken care system? What interventions help, or hurt? Join hosts Jill Escher, Amy Lutz and others from NCSA as they take on the hardest questions of autism with leading thinkers and doers."

Find it on Apple here
Find it on Spotify here
Find it (with video) on YouTube here

Have ideas for episodes or speakers? Please email us
 at NCSA Admin <info@ncsautism.org>

Interested in becoming a sponsor? Please email us at NCSA Admin <info@ncsautism.org>

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Jill Escher is a podcast host with just the right combination of personal experience (two of her children have profound non-verbal autism) and technical expertise to offer engaging weekly interviews on a variety of topics with family members and experts in the autism world.

For a description of Jill Escher’s busy life, see her webpage. 

Part of what she does is promote and fund research “on the genetic toxicology of autism and related neurodevelopmental pathologies” which sets the scene for the very latest podcast from Autism Confidential, Episode #044, entitled “Autism Research Roundup”. Her guest is Dr. Alycia Halliday, chief Science Officer of the Autism Science Foundation. Jill and Alycia (also an autism parent) debate the role of genetics as a cause of autism. Genetics is responsible for possibly 20% of autism cases, but much of autism is unexplained or not understood. Jill is a proponent of looking at other causes and there is good-natured sparring on the current debate on causes. The two also discuss studies on early intervention that show improvement in functioning in young children, but early intervention is not shown to overcome the disability. One thing they agree on totally is that no one should take medical advice from Tik-Tok videos.

I love this stuff, but I know not everyone is enthralled with the science-y part of disability. I also love local heroes who do things rather than just talk about them. In Episode #042, Jackie Ceonzo from New York City is a local hero that I would like to meet. She is the founder of SNACK* that provides recreational classes and instructional programs for kids and young adults, located in Midtown East, NYC. Jackie’s autistic son is among those who was constantly rejected for being too autistic. She took matters into her own hands (with the help of many others) and developed a center where her son “…Joey and other children with special needs would be welcome, regardless of their language abilities, behavioral challenges or skill level. She envisioned a place where parents and children would feel comfortable socializing and learning life and recreation skills in a creative and safe environment.”

Episodes #37 and #38 deal with “Dental Care for Patients with Autism, with Dr. Allen Wong.  “By popular request we are featuring two episodes devoted to all things teeth and dentistry, which looms as a huge issue for autism families. Allen Wong, DDS, is Director of Advanced Education in General Dentistry, Residency Program, University of the Pacific. He teaches dentistry for special health care needs, and hospital dentistry as well. Daily tooth care can be difficult for severely autistic kids and adults, and accessing clinical care can be especially difficult when there is a very sensitive or uncooperative patient.”

In Episode #33: "Bridging the Divide", the podcast veers boldly into the divided autism community with Morénike Giwa Onaiwu, a prominent neurodiversity advocate. “…We were thrilled when she agreed to join us for a special episode about the splintered autism community. We had a productive conversation, and spoiler alert, not many sparks flew. In reality, we found we had much more in common than not, and share a passion for tangible progress in the field of lifespan autism care and housing.” 

My favorite observation from Morénike was that there are horrible people everywhere. I can agree with that, even when I don't much like the neurodiversity movement’s attempt to describe all disability as part of a normal continuum of human experience.

Episode 29: Just Say No to the Bullying of Autism Parents

"Pioneering autism advocate Thomas McKean joins us again...to discuss the bizarre online phenomenon of anti-parent bullying by militant autism self-advocates. Like witch hunts of yore, autism parents are too often accused, without evidence, of all manner of sins: torturing their children, infantilizing them, of self-aggrandizement, of ableism, eugenics, and more. Tom McKean says 'Enough!' to this nonsense in an emotional discussion with NCSA's Jill Escher. Please listen to the very end for Tom's gorgeous, spontaneous soliloquy about the profound love autism parents have for their children."

Episode 27: Thriving with Severe Autism at Bittersweet Farms

This is close to home. Bittersweet Farms, near Toledo, Ohio, is “a pioneering model of a farmstead-based residential and day program serving adults with autism complex behavioral needs. In a world where severely autistic adults are routinely rejected from programs, Bittersweet is a rare treasure. We talk with Dustin Watkins, the program's executive director, about the nature of the programs, the benefits of an outdoor, open-space setting for many adults with autism, the meaning and purpose of their physical and creative efforts on the farm, issues around Medicaid ICF and HCBS models, staffing challenges, the community and connection found in programs like Bittersweet, the financial model, and more. “

And then there is Episode 18: The Poop Episode by Dr Joyce Tu and Kelly Bermingham, which is to say that the podcast has something for everyone.