On June 22, 1999, the Supreme Court decided in Olmstead v. L.C. that people with disabilities cannot be unnecessarily segregated and that they have a right to receive services in the most integrated setting possible. The case was brought by Lois Curtis and Elaine Wilson, two Georgia women with intellectual disabilities and mental health conditions who were living in state-run institutions against their will. Their treatment professionals agreed that they could be served in community-based settings. Justice Ruth Bader Ginsburg wrote for the Court:
“Institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable of or unworthy of participating in community life” and “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.”
By announcing that needless institutionalization is a form of discrimination under federal law, the Supreme Court case marked a fundamental turning point in the civil rights of disabled Americans.
After the Olmstead decision, Lois Curtis was able to start a new life, ultimately living in her own home. She pursued a successful career as an artist and continued to advocate for the rights of people with disabilities. This year marks the first Olmstead anniversary since Ms. Curtis died on November 3, 2022, at her home. Her participation in the case helped create one of the foundations of the disability rights movement. Olmstead affirmed the right of disabled Americans to live independently and has allowed thousands of people to receive services in integrated, community-based settings. The Center for Medicare Advocacy celebrates the 24th anniversary of the Olmstead decision and honors the memory of Lois Curtis.
We also recognize the work that remains. Many Olmstead implementation efforts have focused on Medicaid services, but on this anniversary the Center wants to acknowledge the thousands of people who are struggling to live in the community because they cannot access the home health aides they qualify for from Medicare. Home health aides provide hands-on, personal care to assist with activities such as dressing, bathing, toileting, grooming, feeding, transferring, and walking – services that are critical to the ability of people with chronic, long-term disabilities to remain in their homes and stay out of hospitals and nursing facilities. By law, Medicare authorizes coverage of up to 28 to 35 hours per week of aide services for eligible beneficiaries. But Medicare-covered home health aide visits declined by 90% between 1998 and 2019, and they continue to decline. In 2021 beneficiaries received an average of less than half of an aide visit per 30-day period of care.
The Center filed Johnson v. Becerra last year on behalf of Medicare beneficiaries with chronic conditions who need home health aides to live in their homes, but who receive minimal or no aide services at all. They are at risk for institutionalization and face serious health consequences as a result. The case is currently pending on appeal, and the Center for Medicare Advocacy will continue to work to fulfill the promise of Olmstead and Medicare’s home health benefit.
Read more about Lois Curtis here and here. “Knowing that Lois fought for her own autonomy and the autonomy of others shows the power and strength that exists in being Black and disabled.” – Jennifer White-Johnson
Read more about Medicare-covered home health services and home health aides here and here.
June 22, 2023 – A. Bers