The past twenty years have been full of progress for persons with disabilities. We do a lot of things differently because of this historic piece of legislation. There have been powerful gains, particularly for people with physical disabilities. We are finally at a place where building design and construction take into account the needs of, not only the orthopedically impaired, but also the blind and the deaf. People are offered accommodations in almost every public venue from the supermarket to the opera. Public transportation has been overhauled to provide equal access to all who use it. Our work places now include among their employees more people who are differently abled. So where do we go from here?
I believe that there is one group of people who have benefited far less than others from this legislation and that is individuals with intellectual disabilities. These individuals, especially those with severe impairments, are unable to speak up for themselves and all too often the disability community, in its drive to ensure full inclusion in all aspects of life, fails to take the needs of this group into account. The least restrictive environment for a blind person is very different than it is for a person who lacks the ability to make good judgments about such basic issues as health and safety.
Housing is one place where I see the great disparity between what is seen as the ideal for most persons with disabilities and what is ideal for persons with intellectual disabilities. The notion that a person with an intellectual disability should live in an apartment building with non-disabled peers and rely on the "natural support" of neighbors is absurd. Yet I have been told by persons in the Department of Human Services that to have one floor of a building set aside for persons with intellectual disabilities and having trained staff live on that floor to provide support is not encouraged by current regulations and would, in fact, not be permitted.
The group home model, that has been the norm since de-institutionalization, has not worked. It would not work for the non-disabled, who would find it intolerable to live with five or six randomly assigned strangers. So why would we think it would work for those who have significant life challenges? It would seem to me that being able to live in a dwelling with a person of your choice or alone is how most of us choose to live. People with intellectual disabilities should have that option too. It can only be afforded them if there are adequate supports in place to keep them safe and to provide for their basic needs. This is only financially feasible with some economy of scale. Current funding levels make staffing even a floor of a building with ten or more apartments a fiscal stretch. And funding for supported living is undergoing cuts as I write.
Unfortunately, advocates for rights for the disabled rarely consider this group of people when lobbying for change. This is because they tend to look at people with disabilities as one group whose desire and right is total inclusion in the community. People with intellectual disabilities don't fit that bill - sure they want to be included but they need a lot more help in order to live their lives. Providing that help is expensive and difficult but it is worth it.
Taking into account the needs of this group of people in all aspects of their lives - housing is just one - should be the next item on the agenda for all those who care about disability rights. The ADA was written to include persons with intellectual disabilities, our challenge is to ensure that, in practice, it does just that.
Sharon B. Raimo is CEO of St. Coletta of Greater Washington, a nonsectarian, nonprofit organization serving children and adults with intellectual and multiple disabilities.