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New York Times Letter to the Editor [Submitted] TO: David Shipley, Editor, Op/Ed Christine Kay, Deputy Editor, Op/Ed The New York Times 212-556-4100 fax oped@nytimes.com
FROM: Nancy Ward, President Voice of the Retarded 5005 Newport Drive, Suite 108 Rolling Meadows, IL 60008 817-292-0122 direct
RE: Op/Ed Submission
DATE: December 5, 2003
Given that overall acceptability of persons with disabilities in our society has grown so significantly in the last two decades, it may come as a surprise that there is a forgotten population of people with disabilities. A small segment of the population with mental retardation has managed to get stuck under the radar and, while benefiting from taxpayer support, really does not capture the hearts and minds of the average citizen. The result is growing vulnerability to people with severe and profound mental retardation, as policies develop to support the vast majority of disabilities.
The forgotten population includes people like my daughter.
Dianne was born 42 years ago. She has IQ of 8, which means she functions at the level of a 16-month-old infant. She stands almost 6 feet tall, is quite mobile, loves hats, singing and her own reflection. She will also run into a busy road, ingest almost anything, needs help in all aspects of self-care, and has chronic medical needs.
And she is a resident of Denton State School, a state institution.
Dianne was first placed in a state institution in the mid-70s, before Geraldo Rivera made his name exposing Willowbrook for all its horrors. Families had been lobbying long before Geraldo for federal standards, funding and oversight of these facilities – quality assurances we enjoy to this day.
What was initially our blessing – public awareness -- has become our curse. The image of Willowbrook has stuck in the public’s mind for two reasons: (1) It was shocking beyond imagination; and (2) advocates who now (for various motives) want to see institutions disappear continue to conjure up those images in an effort to malign the excellent programs that exist today.
What are the motives of those who target for closure facilities serving people with mental retardation? Profit certainly comes into play. A cottage industry of researchers, experts, providers, lobbyists and lawyers count on continued deinstitutionalization (closures) to survive.
Other advocates, whose motives are more pure, truly believe that people can’t be well served in congregate settings. These advocates seek a “one size fits all” service solution for people with disabilities. Its appeal (especially to the general public) -- community-based services for all – is deceiving. A community-only solution doesn’t take into account the vast differences within the population with disabilities. Some people with disabilities have college or graduate degrees. Other people, like my daughter, have profound mental retardation and, at age 42, just learned how to hold a spoon (an accomplishment our family celebrated).
As an advocate for choice, I would be the first to stand next to any advocate in a picket line or in the office of a lawmaker supporting the individual’s right to choose and receive community-based supports. Choice and need are the operative words. Regrettably, these concepts – in the blind pursuit for community for all – are often abandoned. This vision neglects the needs and choices of some people with profound mental retardation who also have medical needs. The forgotten population. People like my daughter.
Readers by now will be asking, “why can’t Dianne’s needs be met in the community?” The truth is, her needs could be met IF all health and support requirements were guaranteed. Its like saying someone in the Intensive Care Unit could, theoretically, receive what they need in the comfort of their home. It is possible but expensive to do right and tragic if any corner is cut. In the context of most current facility residents, reported tragedies due to the deinstitutionalization experiment are widespread. Peer reviewed research even questions whether moving people like Dianne to “community” settings will save money, and when money is saved, is it worth the human tragedy?
The forgotten population is worthy of our support – and we can have it both ways. We must absolutely continue to pursue quality community-based services for all persons who need and chose this level of support. But to do so at the expense of a small segment of the population with mental retardation speaks little of our society. We can and must do better.
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