Can it really have been 20 years ago that the Supreme Court made clear, in Olmstead v. L.C., that the Americans with Disabilities Act (ADA) prohibits states and localities from unnecessarily segregating people with disabilities in order to provide them disability-related services?
20 years is a long time in the life of a person with a disability, but it is not a long time in the life of a civil rights movement that challenges discriminatory stereotypes that are as long-held and unquestioned as those about people with disabilities. Though antiquated and more in line with Charles Dickens than Charles Melton, the belief that people with disabilities require separate, specialized, facilities for many aspects of their lives continues to be pervasive in some parts of our society. Though it has been challenged by many marginalized groups looking for freedom on the basis of race and gender, this belief in separate “special” services has been the very foundation on which services for people with disabilities were built and from which those very individuals have to literally escape. The ADA’s Olmstead integration mandate asks us to provide freedom for individuals with disabilities and disentangle services (which can be provided in people’s homes and communities alongside people without disabilities) from facilities and offer those services where the people are.
The history of treatment of people with disabilities is a long one. Before the 17th Century in western societies, people with disabilities were routinely killed – through infanticide, drowning or burning, or abandonment in the woods – often based on the belief that their disabilities were the result of sin or condemnation by God and that society could do nothing to help.
Queen Elizabeth, in the 1601 Act for the Relief of the Poor, moved from punishment to pity by classifying people with disabilities as “the helpless poor.” This perspective, at least, recognized that communities were not obligated to murder their members with disabilities. However, it recognized little societal responsibility to assist, or even include, them in community life. That perspective led to the institutionalization of people with disabilities in asylums, or even cellars where nondisabled people could gawk at them.
In the mid 19th Century, with the Industrial Revolution well under way and populations and economies growing, Americans began establishing hospital-schools for people with disabilities, recognizing at least some societal moral responsibility toward people with disabilities, based, still, in pity but with the added factor of charity. But they were also committed to keeping people with disabilities separate from the community unless and until they were cured. And medical professionals were appointed as the gatekeepers to determine, not only our diagnosis and treatment, but also our ultimate capability. Disability, itself, was still seen as dangerous, and even infectious, and expectations were still very very low. Moreover, charity is a weak reed upon which to build a life. Donors cut charitable contributions first in tight financial times. And charity may keep you alive, but it is unlikely to support you to challenge the “common knowledge” that you’re inherently unable to [learn, work, live independently…].
The late 20th Century saw scholars, advocates, and people with disabilities demonstrating that disability does not inherently mean low achievement, but that the perception of low achievement by people with disabilities was the result of the vicious cycle of society’s low expectations and the charity/scarcity perspective. They pointed out that society cannot know what a person with a disability CAN do until it lets us TRY. Section 504 of the Rehabilitation Act and the ADA recognized that many of the barriers preventing community integration, education, work, and other achievements by people with disabilities, were not essential to the living situation, course of study, or jobs in the community, but were “just the way things had always been done.” The simplest example (which, unfortunately, still poses a huge barrier) is the accessibility of housing – people with mobility disabilities are perfectly able to live in the community, manage their affairs, make money, marry, raise children, and contribute; there is nothing essential to community living about entrances with stairs (life, work, marriage, children, and bills are all stair-neutral); but stepped entrances continue to prevent people with mobility disabilities from living in their communities. Like most barriers to people with disabilities, this is not a disability problem – it’s a construction/design/attitude problem.
The ADA says it is discrimination to unnecessarily segregate people with disabilities. The Department of Justice even gave examples – if you have a general basketball program and a special basketball program for people with disabilities, you can’t force people with disabilities into the special separate program – you have to accommodate them in the general program too. It’s that simple, really.
Doing this sets us up to:
- combat the prevalent mythology that facility-based services are magically better (and cheaper) than the same services in the community (research has debunked this myth, but, like the myth that lightning doesn’t strike the same place twice, it persists);
- break down the funding systems that tie public funding for services to the locations of those services – this requires both the practical work of dismantling existing bureaucracies and challenging the “woodwork” assumption that people with disabilities will start demanding services they don’t need if those services don’t require them to give up their freedom (often expressed as “If we give that to you, everyone will want it.” Really? Everyone will want mental health treatment? Wouldn’t that be a good thing?);
- challenge the belief that people with disabilities can’t be trusted to choose and supervise their own services or providers;
- start welcoming people with disabilities in the schools, worksites, and activities of our communities – so our communities are actually inclusive instead of being surprised, or even offended, every time a person with a disability shows up and wants to participate;
While legislation like the ADA got the ball rolling, it still took plaintiffs Lois Curtis and Elaine Wilson, with their lawyers Susan Jamieson, Steven Caley, and William Gottesman, to teach us that this concept of integration extended to services that were seen as disability-specific: health care, supportive housing, supported employment, special education. They also showed us that these were not unique services created for people with disabilities but rather services that all people need as well. While people without disabilities receive those services in their communities, people with disabilities were required to give up their homes, jobs, and families in order to access disability-specific services in institutions — and that segregation was unnecessary. Nothing about housing, medical, educational, and employment services for people with disabilities requires a facility. Staff are not required to be tethered to the facility, accessible medical equipment does not require patients to live in the next room, and supported employment services aren’t limited to certain special jobs, but can support a person in any regular job at any regular worksite. We can buy a car for service providers to travel to where their customers are living their lives, rather than a bed in an institution for customers to spend their lives in.
Since 1999, when the Supreme Court explained that the ADA meant what it said – if services can be reasonably provided for people with disabilities in the community, they must be – a lot has changed.
- Medicaid and state disability funding have rebalanced (too slowly, but it’s happening!) from prioritizing institutional services to prioritizing community-based services;
- following suit, service providers have shifted their business models to sell their buildings and beds and provide their services on the road;
- people with disabilities, their family members, and advocates have raised their expectations both of what they can do and of how service systems must help them.
Systems change has happened in system after system – sometimes as a result of regulations such as the Centers for Medicare and Medicaid Services’ (CMS) Home and Community-Based Services (HCBS) rules; sometimes as a result of litigation; sometimes as a result of people with disabilities voting with their feet and leaving institutions empty and unsustainable.
As a result of Department of Justice Olmstead enforcement, alone, over 53,000 people with disabilities were able to stay in or return to their homes and communities rather than institutions between 2009 and 2016. That doesn’t count the Olmstead work of the federal regulatory agencies, the Protection and Advocacy organizations and Centers for Independent Living, state officials, disability groups, private legal organizations, policy advocates, service providers, insurers, and people with disabilities and their families across the country. When I started this work 30 years ago, many people without disabilities blithely said they didn’t know anyone with a disability. Few can say that anymore. People with disabilities are at work, at school, on the bus, in the neighborhood – everywhere.
But the work is far from done. The tyranny of low expectations and the institutional bias and perceived financial interests of service systems continue to push people with disabilities into institutions. The failure to sufficiently fund home and community-based services continues to stymie attempts to get timely help prior to a crisis. Funding for community based services for people with disabilities continues to be a question rather than a forgone conlclusion. Local governments and neighborhoods continue to zone or bully people with disabilities out of their communities. Lack of community-based services has forced people with disabilities into incarceration. And cities, towns, and neighborhoods continue to pretend people with disabilities are not there. All of this hearkens back to the 16th Century framework for disability – scarcity of resources and punishment of disability.
We can do better. As we recognize the 20th Anniversary of Olmstead we are reminded that the change that Olmstead brought about doesn’t just happen from the inside of service systems. For a community to be inclusive, the members of the community must welcome and support members with disabilities. That’s you and me.
No problem. We can do this. Let’s start.