America’s Disability System is Failing Us

By Drew Pedersen

At the age of two, my brother was diagnosed with nonverbal Autism spectrum disorder. Sixteen years later, my brother lives a mostly normal life. He goes to school, plays with other kids, and remains kind and endlessly curious.

From a young age, I can remember the awkward silence that would come up when I’d ask, “so what happens after he graduates?” I can remember the uncomfortable looks exchanged by my parents as they’d tell me how he would enter a transitional program until he was 22. When I’d ask what would follow after that, it would always be met with the same answer: “We’re not really sure.”

This same question is being asked by thousands of families every year. Despite decades of awareness campaigns, federal and state legislation, and a whole host of contributions from the private sector, families of neurodivergent children still have shockingly few options when it comes to adult support systems. With Medicaid and other government assisted programs providing only minimal support, thousands of families are faced with a terrible dilemma: How do I ensure my child has the best access to care in a system that seems to provide so little?

“…families are left navigating a system that often feels deeply apathetic to their needs.”

This uncertainty is the defining feature of what advocates call the “service cliff” — a sharp and sudden drop-off in the amount of support and public services available for neurodivergent individuals upon entering adulthood. This dropoff often leaves families struggling to support their child’s health coverage or care services, or even have access to them at all. In the United States, the Individuals with Disabilities Education Act (IDEA) guarantees mandated special needs services to all children within the US education system until the age of 21. These services often include specialized instruction, speech therapy, occupational therapy, and social development programs. What succeeds this system in adulthood, however, is a messy patchwork of underfunded adult services, the quality of which varies widely.

In an attempt to address the service cliff they’ve created, the federal government has offered what are known as home and community-based service (HCBS) waivers, which allow states to provide long-term care services to people in their own homes or community settings rather than institutions. What makes HCBS waivers problematic, however, is that there are more people in need than there are waivers, so applicants are usually waitlisted. In some states, these waitlists stretch for years, or even decades. During that time, families are left to fill the gaps themselves, often at significant financial and emotional cost.

Even once accepted, recipients face a challenging environment. Workforce shortages mean that HCBS recipients often do not have enough caregivers and specialists to adequately suit their needs. Medicaid, which is the primary payer for HCBS waivers, is currently in the midst of major staffing shortages. In fact, a 2022 congressional report found that HCBS workers have a turnover rate between 40 and 60 percent annually.​​ This rate is significantly higher than other careers in the medical field, and is largely attributed to lower wages and poor working conditions. To make matters worse, Health and Human Services Secretary Robert F. Kennedy Jr. has recently proposed doing away with HCBS waivers entirely, claiming it’s fraud for families to be paid for providing care.

But statistics alone don’t capture the full weight of the services cliff. Its true impact is felt in living rooms, kitchen tables, and late-night conversations between parents who are trying to plan for a future they cannot fully secure. For my family and countless others, the question is one of dignity and well-being.

Entering adulthood is supposed to be marked by growth and possibility. Instead, for many individuals with intellectual disabilities, it marks the beginning of isolation and uncertainty. Without adequate support systems, skills developed over years of schooling can stagnate or even regress. Social networks shrink. Opportunities narrow. And families are left navigating a system that often feels deeply apathetic to their needs.

Make no mistake though, the services cliff is not an inevitability, and it can be directly addressed through better policy. Recent initiatives by the Department of Labor have promised to provide supported employment opportunities to more young adults with intellectual disabilities. Furthermore, states like California and Ohio have begun implementing laws to ensure school systems connect families with adult service agencies much earlier in the transition process. Actions like these are all a step in the right direction; expanding funding to our nation’s drastically underfunded Medicaid services would be another.

Ultimately the services cliff represents a tragic national shortcoming. Millions of children and young adults are spending their lives preparing to be members of their community. We should not break that promise just as it’s about to be fulfilled.

Drew is a Minneapolis native and political science and environmental studies double major. He has a strong passion for writing, particularly on current events and political commentary. Outside of school, he enjoys soccer, photography, and travel.

*Note: Works cited may be shared upon request.