CW: Institutional Bias
Yesterday, after two months of grueling work, anxiety, and frustration, I received a notice from MassHealth informing me that I’d been approved for 60 PCA hours per week. Relief washed over me like a deep, sudden wave. It felt like a weight had been lifted off my shoulders.
I’m glad I kept going. I’m grateful for the unwavering support of my doctors, family, and physical therapist. They were steadfast advocates, and it made all the difference.
But it’s frustrating that disabled people have to fight so hard for the services they need. No one should have to spend months collecting paperwork, writing appeals, and demonstrating repeatedly that they require services or equipment to live.
Amidst recent news, my victory feels bittersweet. The U.S. Department of Justice’s Office of Legal Counsel has issued an opinion that could put the future of community living for disabled people at risk.
The landmark Supreme Court case, Olmstead v. L.C. required states to end the unnecessary segregation of disabled people. It began with two women, Lois Curtis and Elaine Wilson, who wanted to live in the community rather than a nursing home. The state denied their request. Subsequently, their lawyer, Susan Jamieson, sued and changed the trajectory of disability rights in America.
For decades, the United States has been moving toward the direction envisioned by Olmstead. Home and community-based services (HCBS) are more humane and often less costly than institutional. These services allow disabled people to live in their own homes, be part of their families and communities, and make the same decisions and enjoy the same freedom as everyone else.
However, there’s a major problem with the system. Medicaid must pay for nursing home care, but under federal law, home and community-based services—the very services that keep people at home—are optional. This distinction makes a difference.
Because home and community-based services are optional, when budgets get tight, a state can cut and cap these services, which can force disabled people into institutions. Whether someone lives in the community should not depend on a state’s budget.
I know what’s at stake because I rely on home and community-based services every day. If I had to live in a nursing home or some other institution, I would not have the same quality of life. In an institution or nursing home, people lose much of their autonomy. People often cannot choose their meals, decide when to have visitors, and have little privacy.
Being institutionalized or in a nursing home means missing ordinary things that are a part of everyday life. I wouldn’t be able to decide to go see a movie on the weekend or go out to dinner. I wouldn’t be able to do my own grocery shopping. These experiences are not luxuries, but a part of life.
Living in my own apartment means I can make decisions that most people take for granted. I can watch TV, listen to music, or stay up late if I want to. No one can criticize my choices. This is what independence is—it’s not just having a place to live; it’s having the freedom to make choices about your life.
Living in the community should not be a privilege. We need to keep fulfilling the goal of the Olmstead decision. This is about freedom—the freedom to live where we want, to be surrounded by our family and friends, and to build a life for ourselves. The future we’re fighting for is one where independence is supported, not limited.
Sources:
“How Two Women Changed Thousands of Lives.” Disability Rights Texas, 17 June 2019, http://www.disabilityrightstx.org/en/2019/06/17/olmstead20th/.
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/
Maniates, Hannah. “Why Did They Do It That Way? Home and Community-Based Services.” National Association of Medicaid Directors, 16 Apr. 2024, medicaiddirectors.org/resource/why-did-they-do-it-that-way-home-and-community-based-services/.
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.