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Ruth Bader Ginsburg's Role in Advancing the Rights of People With Disabilities

On September 18, 2020, Supreme Court Justice Ruth Bader Ginsburg died of complications from pancreatic cancer at the age of 87. Ginsburg was a trailblazer, best known for her work to end gender discrimination as an attorney and later on the Supreme Court. As we memorialize her and celebrate her accomplishments, we should also honor her role in advancing the rights and freedoms of people with disabilities — especially her involvement in the historic case Olmstead v. L.C.

In 1995, two women with mental health and developmental disabilities, Lois Curtis and Elaine Wilson, filed a lawsuit against the state of Georgia claiming discrimination under the Americans With Disabilities Act. Curtis and Wilson both wanted to receive Medicaid-funded treatment in the community, and the medical professionals treating them agreed they were capable of living independently with community supports. Yet they had remained trapped in psychiatric institutions against their will for years.

The state of Georgia argued that financial constraints made providing services to Curtis and Wilson in the community not feasible, and that doing so would represent a “fundamental alteration” to Georgia’s disability service programs as defined by the ADA. The state also claimed that the Medicaid statute requiring funding for institutional settings but not in-home services “reflected a congressional policy preference for treatment in the institution over treatment in the community.”

After winding its way through the lower courts, the Supreme Court agreed to hear the case in 1999, and Ginsburg wrote the majority opinion. The Court found that the “unjustified isolation” of people with disabilities in institutions by a state government or program constitutes discrimination under Title II of the Americans With Disabilities Act. The ruling states:

“Under Title II of the ADA, States are required to provide community-based treatment for persons with mental disabilities when the State’s treatment professionals determine that such placement is appropriate, the affected persons do not oppose such treatment, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities.”

In the opinion, Ginsburg directly connected discrimination against people with disabilities to racial and gender bias, and pointed out that anti-discrimination laws have been broadly interpreted to address many forms of segregation and harm, even if they were not specifically mentioned in the original legislation. She affirmed the inherent harm caused by institutions, saying, “…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.” Ginsburg also noted that a person shouldn’t be removed from an institution if they preferred to receive care there, and that in a few cases, institutional settings might be the only appropriate temporary or permanent placement to meet someone’s disability needs.

The Court found that in most cases, providing services in the community is less expensive than providing them in an institutional setting, and noted the availability of Medicaid waivers to fund home and community-based services. However, Ginsburg also stated that if a state creates a “comprehensive, effectively working plan for placing qualified persons with mental disabilities in less restrictive settings, and a waiting list that moved at a reasonable pace not controlled by the State’s endeavors to keep its institutions fully populated, the reasonable-modifications standard would be met.” In other words, a person living in an institutional setting could experience a short delay in receiving community placement without it representing discrimination under the ADA.

Additional lower court rulings have clarified the mandates set forth by Ginsburg in Olmstead, and applied the ruling to other disability populations, including those with physical disabilities who need assistance with personal care. In the 2003 case Fisher v. Oklahoma Healthcare Authority, the 10th Circuit Court of Appeals ruled that people with disabilities do not have to be institutionalized to be protected from institutionalization by the ADA. The court noted, “these protections would be meaningless if plaintiffs were required to segregate themselves by entering an institution before they could challenge an allegedly discriminatory law or policy that threatens to force them into segregated isolation.” This ruling expanded the rights of people at high risk of institutionalization to access home and community-based services.

In the more than 20 years since the Olmstead ruling, Medicaid waivers have been greatly expanded. Most states now offer at least some of their Medicaid recipients with disabilities the option to self-direct their care, meaning they choose and manage the workers who assist them in their home. Many states allow family members to be paid caregivers, so they are not forced to choose between working and caring for a loved one. However, one of the biggest challenges in implementing Olmstead has been getting states to reallocate funding from institutions to home and community-based services (HCBS). Despite Olmstead, Medicaid itself still has an institutional bias, meaning states are required to pay for nursing home care but not in-home care. Even though HCBS is less expensive than institutions, many states still push people into nursing homes and intermediate care facilities.

Although the Olmstead ruling was groundbreaking, one portion of the opinion had consequences the Court likely never intended. Unfortunately, when Ginsburg asserted that a reasonable waiting list to receive services would not constitute discrimination, she did not define “reasonable.” As of 2018, more than 820,000 people with disabilities were on waiting lists to receive home and community-based services. More than 70% are people with intellectual and developmental disabilities, the very individuals the original Olmstead ruling was designed to protect, and they must wait an average of 5.5 years for services. About 385,000 Texans with disabilities are currently on a waiting list, 71,000 in Florida, and 68,000 in Ohio. Surely these numbers would not fall under anyone’s definition of “reasonable.”

In response to long waiting lists and the Olmstead mandate, the federal government has developed programs to help address the disparity. Money Follows the Person was established in 2005 and provides grants to states to help people with chronic conditions and disabilities transition from institutions into the community. Currently, 43 states plus the District of Columbia have MFP programs. Unfortunately, MFP does not have a permanent funding allocation and must be periodically reauthorized, with the most recent short-term authorization approved as part of the March 2020 COVID-19 relief package. To date, Money Follows the Person has helped more than 93,000 people get out of institutions.

The Community First Choice Program was created by the Affordable Care Act and makes it easier for states to offer home and community-based services for people who would otherwise require institutional care. States that establish CFC programs get a 6% increase in matching funds from the federal government for these services. CFC prohibits waiting lists, and requires the option of self-directed care, allowing people with disabilities to choose and manage their personal care attendants. However, like MFP, the program is optional and currently, only seven states are participating: California, Oregon, Maryland, Montana, Washington, Texas, and Connecticut.

As we remember Ginsburg and her contributions to promoting the civil rights of women, people of color, LGBTQ people, and people with disabilities, we must also recognize that the fight for equality is far from over. The COVID-19 pandemic has demonstrated how systemic discrimination is quite literally killing people in marginalized communities. Tens of thousands of people with disabilities are dying because they have no access to the freedoms promised by Olmstead v. L.C. In 2020, institutions don’t just diminish the freedoms and opportunities of those forced to live there — they have become death traps. More than 40% of COVID-19 deaths are linked to nursing homes; their crowded conditions create an ideal breeding ground for the virus. Most of these deaths could have been prevented if Olmstead was properly enforced and states fulfilled their obligation to provide in-home care instead of congregate care to seniors and people with disabilities.

In the coming days, weeks, months and years, people will pay tribute to Ruth Bader Ginsburg in innumerable ways. There will be “Notorious RBG” T-shirts, Halloween costumes, and of course, considerable activism surrounding who should take her place on the Supreme Court. But you can also honor Ginsburg by supporting people with disabilities in your community. Tell the disabled and/or aging adults in your life that they have a right to receive care at home, and help them fight for it if necessary. Vote for state and national candidates who support increased access to health care, more funding for Medicaid home and community-based services, ending waiting lists, and disability rights in general.

“Fight for the things that you care about, but do it in a way that will lead others to join you.” –Ruth Bader Ginsburg

Image via Wikimedia commons