October, 2002
On the flight home from an exhausting but informative conference in Kansas City, Missouri, I was looking over my extremely long and somewhat frightening list of things to do. It was not long before self-pity set in. I started thinking, how am I going to get everything done? Why do I always have so much to do?
I was starting to get really good at feeling sorry for myself, when I thought about a woman I recently met who had just left the institution she had been living in for almost fifty years. She testified recently before two California Assembly Committees about her experience and when she finished, there was not a dry eye in the house.
The staff at the institution where she lived assumed that because of her speech-related disability, there was no way she could communicate. She talked about sitting in a chair for days on end with nothing to do, and wanting so badly to just have a book to read. Well, my self-pity party came to an end very quickly after I remembered her story. I may have a lot of things to do, but at least I've had the opportunity to do them.
The topic of institutionalization is timely because of some of the activities taking place at the State level regarding a Supreme Court decision called, Olmstead v. L.C. and E.W. Lois Curtis (L.C.) and Elaine Wilson (E.W.) are two women with disabilities that were living in a Georgia institution. They wanted to live in the community; and their doctors agreed that they could with the appropriate services and supports.
They sued the State of Georgia after being on a waiting list for community placement for years. They argued that making a person with a disability stay in an institution when they are capable of living in the community was a violation of the Americans with Disabilities Act. The Supreme Court agreed, ruling that the unnecessary segregation of people with disabilities in institutions is discrimination and a violation of the ADA.
They reasoned that institutionalization severely diminishes the everyday life activities of individuals with disabilities including their family relationships, social contacts and work options and it perpetuates unwarranted assumptions that people with disabilities are incapable or unworthy of participating in community life.
The Olmstead decision does not mean that all institutionalization is considered discrimination under the ADA. The decision requires states to place persons with disabilities in community settings if the community, not an institution, is the most integrated setting appropriate to their needs. Basically, the person with the disability must want to live in the community, and their doctors must agree that they are capable of living outside the institution with the appropriate community services and supports.
So what are these services and supports? The answer is anything that will assist a person with living in the community, and that answer will be different for each person. One individual may need a caregiver to assist them with bathing and dressing, one person may need equipment such as a motorized wheelchair, and still another may need affordable housing.
Many states already have plans in place to implement Olmstead. California however has no plan. The State Long Term Care Council would like organizations to hold community forums to ask people with disabilities and service providers what services are needed to help individuals leave institutions or avoid having to be there in the first place.
This ruling can be as meaningful to people with disabilities in California as the passage of the ADA, if individuals and service providers provide input about what is needed in their communities. CCCIL would like to assist with this effort by gathering this information and sharing it with the Long Term Care Council. If you would like to learn more about how you can help, please contact me at (831) 757-2968, or ddallimore@cccil.org.
Oh, and just so you know, the woman I mentioned who was living in an institution, now lives in an apartment she shares with a caregiver. She is a disability rights advocate who enjoys taking art classes and dancing with a dance troupe. I'd venture a guess that her to do list is now longer than mine.