Making sure more people with disabilities can live independently
This past summer we celebrated the 25th Anniversary of the Americans with Disabilities Act (ADA), the 1990 civil rights law broadly prohibiting discrimination against people with disabilities. The ADA proclaimed that people with disabilities have the same rights and must have the same opportunities as other people, including access to employment, to state and local government programs and services, public and commercial facilities, telecommunications and more.
While the ADA’s significance cannot be overstated, no law is a magic bullet and its passage did not suddenly bring an end to disability discrimination. Like all civil rights laws, what the ADA did do is create a powerful tool for challenging discrimination.
Over the past quarter century, the ADA has been used, primarily by the Justice Department but also by private citizens and nonprofits, to make education, housing, technology, public and private buildings, and transportation more accessible to people with disabilities, among many other accomplishments that would not have been possible without the law.
One of the most far-reaching consequences of the ADA is the 1999 ruling in Olmstead v. L.C., in which the U.S. Supreme Court held that people with disabilities have a right to receive the support they need to live in their communities, rather than be unwillingly stuck in institutions. The ADA provided the legal grounds for the Olmstead lawsuit, allowing the plaintiff, a woman with a disability, to successfully challenge her unwanted institutionalization.
Even a Supreme Court ruling, though, is only as powerful as the people who make sure it is followed and today the struggle for independence continues.
In December, the Disability Integration Act (DIA) was introduced in Congress by New York’s Senior Senator Chuck Schumer. The purpose of the DIA is, essentially, to enforce the mandates of the Olmstead ruling by requiring every state to ensure that people with disabilities can leave institutions and live in their communities. Supporters of the law believe it is needed because, according to congressional findings, despite Olmstead:
[M]any States still do not provide sufficient community-based long-term services and supports to individuals with disabilities to end segregation in institutions. . . . As a result, many individuals with disabilities who reside in institutions are prevented from residing in the community and individuals with disabilities who are not in institutions find themselves at risk of institutional placement. . . . The continuing existence of unfair and unnecessary institutionalization denies individuals with disabilities the opportunity to live and participate on an equal basis in the community and costs the United States billions of dollars in unnecessary spending related to perpetuating dependency and unnecessary confinement.
To remedy this, the DIA, which you can read here, would require states to create enforceable, measurable goals for transitioning people with disabilities out of institutions. More to the point, it would prohibit state policies that tend to keep people in institutions, including: onerous eligibility criteria; service or cost caps; long waiting lists; maintaining an inadequate pay structure for caregivers; and failing to provide the long-term services and supports needed for someone with one or more disabilities to live in the community.
States would also be required to regularly notify people living in institutions of their community based options and to ensure that sufficient affordable, accessible, integrated housing is available.
In essence, the DIA seeks to counter what disability rights advocates call “institutional bias,” the tendency for government decision makers to view institutions as the first, best choice for some people with disabilities.
“We have institutional bias because there is a strong, well-financed lobby for nursing homes and other care facilities that are privately owned,” says Marilyn Saviola, ICS Senior Vice President for Advocacy. “There is also strong union backing to keep jobs in institutions that currently pay more than what workers receive for community based care.”
Another very important thing the DIA would do is to provide federal protection for consumer-directed care programs, which currently exist at the mercy of state-by-state political and fiscal support, as illustrated in recent years by threats to consumer-directed services in Pennsylvania, Wisconsin, California and elsewhere.
Ensuring the long term protection of consumer directed services alone would be a big deal. It would allow people who currently use these services to breathe a sigh of relief and allow many more people to leave institutions for community living.
“If our goal is to make sure that every person who wants to can live in the community, mandating the availability of consumer-directed services is essential because for some people that is truly the only path to independence,” explains Anna Fay, ICS Senior Vice President for Independent Living.
“I have seen this time and again. For example, one of our members, a middle-aged man, was living in a skilled nursing facility for months, despite having his own apartment and supportive family members. He was terrified to leave the institution because his disability creates complex needs that an agency home care aide would not be able to meet. By enrolling in our consumer-directed program, he was able to hire personal assistants capable of providing the unique services he requires to live outside of an institution and move back home.”
What’s the rub?
Passing legislation in Congress is never easy and seldom quick. The DIA was introduced less than two months ago and currently has only two co-sponsors. Procedurally, it is sitting in the Senate health committee, which can kill the bill, send it to another committee for consideration, or send it out for debate by the full Senate.
Long story short, a lot of grassroots work will be needed to get this bill off the ground. This is particularly true because while community-based services may save money in the long run, in the near-term the DIA will require states to spend money on, for example, creating accessible housing and funding community-based long-term services and supports. The bill does include some fiscal incentives for states that do a good job, but it’s still a heavy lift.
That said, if the history of the disability rights movement tells us anything, it’s that we need to take the long view. The very first federal law affirming the civil rights of people with disabilities wasn’t enacted until 1973, when Congress banned entities receiving federal funds – such as schools and businesses – from discriminating against people with disabilities. Even after that it took 17 years to pass the ADA.
The Disability Integration Act would create a cohesive set of rules to ensure that more people with disabilities can reap the benefits of the ADA and the Olmstead ruling in all 50 states. It would promote independence and choice for millions of Americans. It’s an important proposal and one we’ll be keeping an eye on so that we can continue to keep you informed.