CW: Institutional Bias
Today marks 36 years since the Americans with Disabilities Act was passed. The anniversary is arriving at a time when the people the ADA is supposed to help are feeling the pressure in very real, personal ways.
The ADA has always been about allowing disabled people to live their lives fully: to live at home, work, raise families, and be active in their communities. But now, with significant cuts to Medicaid, a new memo from the DOJ that seems to limit its scope, and long-standing issues within the system, these everyday freedoms are under threat.
One of the major challenges is with Medicaid itself. While federal law mandates coverage for nursing home care, services that help people stay in their homes and communities are optional. These home and community-based services (HCBS) are precisely what allow people to avoid nursing homes, institutions, and hospitals.
The difference is significant. It means states can reduce HCBS funding when budgets are tight. These cuts have a direct impact on millions of people. These aren’t just abstract policy changes; they directly affect people’s daily routines, their safety, and their ability to live independently.
I experienced these effects firsthand this spring. I depend on personal care attendant (PCA) services for help with everyday tasks. MassHealth didn’t tell me directly that anything was changing. Instead, I received a notice stating I had exceeded my allotted PCA hours. The same hours I count on to live independently. On paper, it might have seemed like a simple budget adjustment. For me, it meant losing the nighttime care I needed.
I ended up spending nearly two months arguing with MassHealth, submitting documents, filing appeals, and repeatedly proving I still required the services I had been receiving. I was successful, but the ordeal left me feeling exhausted and sad. Nobody should have to spend months trying to justify their needs just to maintain the support that allows them to live in their own community.
These kinds of experiences highlight how unstable these programs can be. When policymakers discuss “streamlining” programs or cutting services” what they’re really doing is threatening people’s health, safety, and autonomy. And the DOJ’s memo, suggesting a narrower view of the ADA’s mandate for community integration, adds another layer of concern. If states cut services and the federal government lessens its oversight, people might be forced into institutions with fewer options to challenge these decisions.
As the ADA celebrates its 36th anniversary, the stakes are incredibly high. To uphold its promise, we need to protect Medicaid funding, strengthen enforcement of the law, and remember that every policy decision has a tangible impact on someone’s life. Disabled people deserve consistent support, independence, and the freedom to live in their communities.
Sources:
Broderick, Timmy. “Why Medicaid Cuts Could Be a ‘crisis’ for People with Disabilities.” STAT, Boston Globe Media, 3 Jan. 2025, http://www.statnews.com/2025/01/06/trump-medicaid-cuts-could-hurt-people-with-disabilities/.
Diament, Michelle. “Justice Department Deems Major ADA Guidance ‘Not Enforceable.’” Disability Scoop, 20 July 2026, https://www.disabilityscoop.com/2026/07/20/justice-department-deems-major-ada-guidance-not-enforceable/32093/.
Lynch, Sarah N. “States Aren’t Required to Provide Community-Based Care for People with Disabilities, New DOJ Opinion Claims.” CBS News, 18 June 2026, https://www.cbsnews.com/news/doj-disability-opinion-community-care/.
Roppolo, Michael. “July Is Disability Pride Month. Here’s What You Should Know.” CBS News, 22 July 2024, http://www.cbsnews.com/news/july-disability-pride-month-what-to-know/.
Shapiro, Joseph. “Lois Curtis, Who Won a Landmark Civil Rights Case for People with Disabilities, Died.” NPR, 5 Nov. 2022, https://www.npr.org/2022/11/05/1134426128/lois-curtis-who-won-a-landmark-civil-rights-case-for-people-with-disabilities-di.