By Jackie Miller
The late Ruth Bader Ginsburg’s dream of becoming a “great diva” did not come to fruition in the truest sense, but she sang her opinions from the highest court in the land, and they reverberated throughout the United States. In honor of her lasting contributions to the disability rights movement and in recognition of Disability Employment Awareness Month in October, we’re taking a moment to highlight a few of her key decisions and reflect on the role of Healthforce Center in driving equitable, social change through evidence-based research.
The Disability Rights Movement: A Brief History
The two most recent pieces of legislation that encapsulate the disability rights movement, the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA), demonstrated a philosophical shift from the “medical model” toward the “social model” of disability. While the medical model views disability as a problem of an individual, the social model asserts that the problems associated with disability are created by social structures, which can be mitigated by societal integration. This shift guided the Rehabilitation Act of 1973, which prohibited disability-based discrimination in certain federal contexts, laying the groundwork for the ADA (1990) and extended the prohibition of disability-based discrimination to additional settings (e.g., employment, public, and private services). However, despite the enactment of the ADA 30 years ago, the fight for disability rights is not over.
RBG‘s Impact on the Disability Rights Movement
There are three cases that exemplify Justice Ginsburg’s support for and commitment to the rights movement. In Bragdon v. Abbott (1998), it was decided that the plaintiff, who had an asymptomatic HIV infection, did have a disability under the ADA. Justice Kennedy’s majority opinion described the inherent physical limitations of HIV, whereas Ginsburg’s concurrent opinion stated that society’s reactions to impairments, such as HIV, were what caused impairments to be disabling. Thus, she argued “that people with [asymptomatic HIV] were entitled to protection because society limits their opportunities.”
In Sutton v. United Air Lines (1999), the court held that measures used or taken (e.g., prosthetics, medications) to mitigate a person's disability to such a degree that their disability would no longer be considered a significant impediment still had to be factored into the definition of disability. While the majority opinion established this narrow definition of disability by ruling against two sisters with myopia, who argued that they were being discriminated against because they were legally blind, Ginsburg again filed a concurring opinion that was aligned with the disability rights’ ideology: “In no sensible way can one rank the large numbers of diverse individuals with corrected disabilities as a ‘discrete and insular minority.’”
Lastly, and perhaps most importantly, Ginsburg’s majority opinion in Olmstead v. L.C. ensured two victories for disability rights activists. In Olmstead v. L.C., the court held that two women who had mental illness and developmental disabilities were unlawfully kept in a hospital despite their medical professional’s opinion that they could live outside of an institution with available community support. Ginsburg’s view noted that this case “attacked a practice that the disability rights movement had long mobilized against: the isolation of individuals with disabilities in congregate institutions separate from the community at large.” Furthermore, the holding demonstrated the right for people with disabilities to remain a part of society.
Healthforce Center’s Impact on the Disability Rights Movement
Healthforce has worked with the Disability Rights Education & Defense Fund (DREDF), a leading national civil rights law and policy center, on many projects over the years. Most recently, DREDF and Healthforce collaborated on a study that examines how the laws that determine which tasks nurses can delegate to home care workers, and how they can delegate these tasks, affect home care workers’ ability to deliver care to their clients with disabilities and/or who are aging in place. Across four different states with varying levels of restriction in their laws, the study did not find widespread support among agency directors for increasing the number of delegated tasks, but it did find that the majority of home care workers would feel comfortable with taking on additional delegated tasks, if they were properly trained in how to complete those tasks. This finding indicates that the home care workforce might be open to taking on additional responsibilities, which crucially could allow for more people to remain in their homes. This research underpins a broader conversation about transforming health care practices to advocate for and accommodate people with disabilities to be able to remain in their homes and in the community.
While this study dealt with the impact of state laws on home care, another recent Healthforce report examines how providing financial relief to people in need of home care services helps them remain in their home. The Support at Home program was a three-year pilot program, funded by the City and County of San Francisco, that provided home care vouchers to people with disabilities and/or aging in place in order to help them pay for the home care services they needed in order to remain in their own homes. Healthforce’s evaluation found that, in addition to clients of the program feeling less stressed about the financial responsibility of paying for home care, clients experienced a greater quality of life and improved health outcomes (e.g., fewer falls, fewer emergency room visits). Again, this research makes an evidence-based case for providing people with disabilities the option to remain in their homes and in the community with health care options adapted to meet patient needs.
These examples underscore the vital role research plays in informing policy decisions about the real impact that changes to our current health care practices could play in the well-being of people with disabilities.
The Role of Research in Social Change
Though her contributions were significant, Ginsburg recognized that the Supreme Court plays an important, albeit limited, role in fostering social change. In her Madison lecture, she stated that the courts should “participate in a dialogue with the other organs of government and with the people as well.” In a year where there have been so many changes and challenges to all aspects of everyday life, it’s important not to lose sight of the progress that still needs to be made in creating more equitable social practices for marginalized communities. Healthforce is committed to being a part of this change by supporting health leaders through our research and leadership training opportunities for better, more equitable health care for all.
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Jackie Miller is a research analyst with the Institute for Health Policy Studies and Healthforce Center. Her projects focus on a range of research including community health workers, workforce policies and workforce supply and demand.