As a child, I loved back-to-school season. I enjoyed shopping for new school supplies and looked forward to a new year. In the US, disabled children are entitled to a free and appropriate education under federal law. Whenever someone graduates or ages out, all the support they received from their school district ends.
For me, this happened when I graduated in 2018. Ever since, I’ve learned that support for disabled adults is very much a patchwork system. You are suddenly dealing with multiple providers. There are vocational rehabilitation programs, independent living centers, home healthcare, and Social Security, just to name a few. It’s very exhausting when you are dealing with multiple providers in order to ensure your needs are met.
In school, I had a paraprofessional, assistive technology, and physical therapy. I was fortunate to have wonderful teachers as well. Because I had the right support, I was able to do well in school.
When I graduated from high school, there was a two-year gap before I started PT again. As an adult, you also have to deal with health insurance for these services. Sometimes, insurance companies deny services like physical therapy or occupational therapy.
Adulthood doesn’t come with the built-in structure that school provided. At school, services are coordinated for you. Unfortunately, adults must navigate systems that don’t communicate with each other, fail to share information, and often can’t agree on what is considered “medically necessary.” What used to feel automatic becomes something you have to fight for.
You keep copies of every letter, evaluation, and prescription. You follow up, and then you follow up again, since silence from an agency usually doesn’t mean approval. That silence can mean your paperwork is sitting on someone’s desk, waiting for a signature.
For other people, adulthood means trying to find any services at all. Waitlists are often years long. Day programs and group homes may not be equipped to serve people with complex needs. A lack of programs can mean that adults are stuck at home. This shouldn’t happen, but it does. Everybody should be able to access the support they need.
Transitioning to adulthood should be a rite of passage. For many disabled people it can feel like a cliff. The same support that made school possible isn’t easy to find in the adult world. Adulthood as a disabled person isn’t just about living your life; it’s also about navigating the systems that give you the chance to have a life.
Sources:
Amer, Yasmin. “Shortage of Care Workers Means Heartache, Stress for People with Disabilities and Their Families.” WBUR News, Boston University, 5 Dec. 2022, https://www.wbur.org/news/2022/12/05/care-work-disability-human-services.
Colson, Tori L., and Moriah J. Smothers. “FAPE, LRE, and Related Laws: Implications for Inclusion and Co-teaching.” Kentucky Teacher Education Journal: The Journal of the Teacher Education Division of the Kentucky Council for Exceptional Children, vol. 5, no. 1, 2018, article 1. https://doi.org/10.61611/2995-5904.1004.
Lusk, Sarah. “The Dimming Light of the IDEA: The Need to Reevaluate the Definition of a Free Appropriate Public Education.” Pace Law Review, vol. 36, no. 1, 2015, pp. 291–318. https://doi.org/10.58948/2331-3528.1918.