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.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.