President George H.W. Bush signed the Americans with Disabilities Act on July 26, 1990, establishing “a clear and comprehensive prohibition of discrimination on the basis of disability.” Yet 30 years later, both disabled and elderly Americans are regularly segregated into institutional settings.
In its 1999 Olmstead v. LC ruling, the Supreme Court found that disabled people have a right to live in the “most integrated setting appropriate” under the ADA. In the years since, rather than implementing systemic change to recognize that the “most integrated setting appropriate” is always in the community, disabled individuals must fight for community living on a case-by-case basis.
Advocates agree legislation is needed to secure the right to live in the community as a civil right: When public and private insurers offer long-term services and support, they must offer them in the community, not just long-term care facilities, the current default. Congress would need to pass this legislation to ensure the full potential of the ADA.
The Disability Integration Act currently in Congress would remedy many of the problems that disabled people face in getting paid help with the day-to-day tasks that allow them to live in the community. As it stands, the pipeline to nursing facilities is much stronger than each individual’s case for getting community-based services.
The Disability Integration Act of 2015 died in Congress. The bill was reintroduced in 2019 by Chuck Schumer in the U.S. Senate, where it has 36 sponsors, and James Sensenbrenner Jr. in the House of Representatives, where it has 237 co-sponsors. The Disability Integration Act of 2019 has been stalled in the Senate Committee on Health, Education, Labor, and Pensions, and the House Subcommittee on the Constitution, Civil Rights, and Civil Liberties for more than a year.
Its mandate is “to prohibit discrimination against individuals with disabilities who need long-term services and supports” and it is supported by more than 600 groups nationwide.
The Affordable Care Act established the Community First Choice Option, which allows states to provide home and community-based attendant services and supports to eligible Medicaid enrollees under their state plan. According to the Center for Disability Rights, “Community First Choice Option sets the framework for a fully integrated, non-diagnosis-specific, community-based service system that provides individuals the civil right to live independently in the community and out of an institution.” However, the recently passed budget in New York State included Medicaid cuts that jeopardize Community First Choice Option implementation.
Bryan O’Malley, the executive director of the Consumer Directed Personal Assistance Association of New York, told the New York Daily News that the Medicaid cuts were “incomprehensible.” And Richard Gottfried, chairman of the State Assembly Committee on Health, was outraged at the new restrictions on finances and changes in qualifications, which will go into effect on Oct. 1. “This is based on a cruel notion that people are getting home care when they don’t really need it,” Gottfried told Able Newspaper in June.
All of this illustrates why a national civil rights law must be passed. As long as we approach disability as a medical problem, there will be ongoing excuses for mass segregation and institutionalization.
Karin Falcone Krieger of Oyster Bay is a staff writer at Able Newspaper, a publication covering the disabled.