June 22 Marks the 22nd Anniversary of Olmstead v. L.C. by Zimring

Landmark Supreme Court Case determined disabled individuals have a right to services within the community over institutionalization

The Consumer Directed Personal Assistance Association of New York State (CDPAANYS), along with disability advocates across the country, is celebrating the twenty-second anniversary of the Supreme Court’s historic civil rights decision in the case of Olmstead v L.C. (by Zimring). In the intervening years, the decision has begun to fundamentally shift the landscape of how services are provided to physically, mentally, and developmentally disabled individuals. Without it, the horrors of COVID-19 in nursing homes and other institutions would have been even worse.

Lois Curtis, a Black, disabled woman involuntarily committed to institutions from childhood, will remain in the pantheon of civil rights heroes such as Rosa Parks or Harriet Tubman. Despite being told by medical professionals and State officials that she must be in an institution, she successfully challenged the State of Georgia who had enforced this arrangement. The Court found that Medicaid-funded services for individuals with disabilities must be provided within the community over institutionalization if desired by the recipient. Today, Lois Curtis lives independently and is a successful artist who received the Harriet Tubman Act of Courage Award in 2007 for her efforts in fighting injustice.

“While this anniversary is a day of celebration, it is also an important time to reflect on where we go next”, said CDPAANYS Executive Director Bryan O’Malley. “It has been more than two decades since this decision was handed down and here in New York, thousands are being forced into nursing homes despite their desire to be active members of their community.”

Consumer directed personal assistance (CDPA) is an increasingly popular option for those seeking to stay at home. Because those who need services hire and supervise their workers, the program provides the maximum amount of flexibility and participation in community activities. However, repeated cuts to Medicaid reimbursement rates over the last decade have artificially suppressed worker wages while other sectors, such as fast food and retail, pay more hourly. This has led to New York being home to the largest workforce shortage in the nation, according to Mercer workforce consulting.

Nikki Reese, a disabled woman from the Bushwick neighborhood in Brooklyn, has been using CDPA for years to allow her to live independently. However, she notes that when she recently had to fill an open spot, it took almost three months to do so, and she counts herself lucky. “My workers are very professional. They work odd shifts and overtime to do what is needed to keep me safe and at home.” When she was finally able to hire new staff, Nikki notes that she was forced to do so without taking steps that she, like most employers, typically would. “I was desperate. I had to skim over what I usually do. I couldn’t check references or take the time to see who might work best with me. I just needed help.”

Geri Mariano, a disabled woman living in Westchester, said, “Starting in September 2020, while still in the throes of the COVID-19 pandemic, I began having PAs leaving for other jobs. This forced me to put my health at further risk as I interviewed potential workers contrary to medical recommendations and the Governor’s own guidance regarding COVID-19. Several applicants who went as far as taking forms to fill out would cancel appointments to finalize, telling me they were offered other employment for higher pay.  Many would instantly turn me down based on the low pay wage.  Since September I have not had full coverage – even though I was approved for twenty-four hour shifts just a few months ago.  As of today, I have to go as long as twelve hours alone at times.  Because of surgeries gone awry over past 11 years I am mostly bed-bound and definitely stuck in bed when alone since need full assistance to get up into WC.  In 1969, progressive thinking social workers helped make sure I could grow up with a family and not in an institution after being abandoned by biological parents.  Today, if New York is to meet the promise of the Olmstead v. L.C. decision, we must do better and pay home care workers enough so they will want to stay in these jobs and so I can continue to live the life I want to and deserve to live in the community.”

Advocates also point to recent policy shifts apart from funding that have jeopardized New York’s compliance with the mandate established in Olmstead v L.C. Policies that encourage institutional placement for those who receive a high level of services would mandate nursing home placement despite a lack of clinical evidence indicating that hours of care can provide a basis for decision-making on one’s ability to live independently. Additionally, changes in how assessments are conducted and the legal appeal rights of seniors and disabled folks in need of services also pose a significant risk.

T.K. Small, an attorney in Brooklyn who uses CDPA today, spent 9 1/2 years in a rehabilitation hospital for kids, summed it up this way, “I had to fight to get out and build a life for myself. I won’t go back to living in an institution. I will give everything I have to make sure New York lives up to the mandate of Olmstead v L.C., because my independence, and the independence of all disabled New Yorkers, demands it.”