“Girl, I’m not going back to that nursing home.” The words, spoken softly, yet fiercely, hung in the air. My friend, Latonya Reeves, had called me from Memphis. She’d just been informed that she was going to be placed in a nursing home, because in 1991, the state of Tennessee had no programs to to care for disabled people in their homes.
Latonya and I were members of a national disability rights group called ADAPT, which had played a major role in the fight for the passage of the Americans with Disabilities Act. ADAPT had just turned its attention to the lack of home and community based care for disabled. Even with the passing of the ADA, landmark civil rights legislation, disabled people had no civil right to live in the community. Few states had any programs where attendant services could be provided at home so that a disabled person could live independently. ADAPT was working on legislation that would redirect 25% of Medicaid funds to a national program of attendant services and supports. It would end what’s known as the institutional bias, where disabled people had a right to be institutionalized, but no right to live in freedom.
“Call Wade”, I said, referring to Wade Blank, one of the founders of ADAPT, and of Atlantis Community, where I worked. Atlantis is an independent living center in Denver, Colorado, one of the oldest in the country. Independent living centers are nonresidential places where disabled people go to get services like independent living skills training, peer counseling and other services. They are run by disabled people and their boards of directors are majority disabled. I had been working at Atlantis as a community organizer, and knew that Wade, my supervisor and mentor, might be able to help.
Sure enough, he did! Wade got up with Deborah Cunningham at the Memphis Center for Independent Living and coordinated with her and us organizers to put a plan together to bring Latonya to Denver. We found her an apartment and other services. I stayed with her for a few days and taught her to use the bus. Best of all, Latonya got a job at Atlantis! She began as a community organizer, but wound up working to help people move from nursing facilities back into the community.
Over the years, Latonya worked hard to get people out of institutions and into their own homes. She went into countless facilities and was shocked and angered by what she learned. She told me, “Girl, these nursing homes out here telling people they gon die if they live in the community!” Latonya would tell people, “look at me, I’m living in the community. You can do it too. I will help you.” She served on advisory committees , became well known to state officials and legislators and was even Miss Wheelchair Colorado, using her platform to advocate for disabled people to have the civil right to live at home.
Latonya’s work in Colorado and around the nation led to improvements in the lives of disabled people. Every state now has attendant services and more disabled people are living in freedom. Still, there’s no civil right of disabled people to live free and get services and supports where they want. ADAPT worked on legislation with this in mind, and in honor of her plight and work, named it the Latonya Reeves Freedom Act.
The Latonya Reeves Freedom Act would protect and expand the civil right of Americans with disabilities to receive long-term services and supports in the setting of their choice. The legislation will enable individuals with disabilities to live independent lives in their community and would:
● Establish a comprehensive State planning requirement with enforceable and measurable objectives to transition individuals with disabilities out of institutions and into the most integrated setting, if they choose that transition;
● Prevent State governments and insurers from engaging in discriminatory practices, policies, or rules that would prevent an eligible individual from receiving community-based LTSS;
● Identify and address disparities in the provision of community-based LTSS; and
● Accelerate State compliance with the integration mandate of the ADA.
Sadly, Latonya died on January 9, 2023, but the Act that bears her name was reintroduced in the House and the Senate on April 19, 2023, on what would have been Latonya’s 59th birthday. The Latonya Reeves Freedom Act of 2023 (HR 2708, S 1193) has both bipartisan and bicameral support. As of this writing, there are 219 cosponsors in the House and 23 in the Senate.
Latonya Reeves was a passionate, fierce, fearless activist whose story must be told. She is one of countless Black disabled activists left out of disability history. My project, We Were There, Too: Blacks in the Disability Movement, will tell the stories and contributions of those Black activists so that their will continue.