A Parent's Point of View

by John P. Cleary

November 17, 2009

Go online and look at some of the photos of the conditions at the Willowbrook State School.

Brace yourself. They are not pretty.

If you are old enough, you will remember how you felt when you saw them for the first time: A little sick, I'm sure, and probably angry and bewildered at how our fellow human beings were being treated. If you are seeing those images for the first time, I hope you will rejoice at how far we have come in providing services for people with developmental disabilities over the last four decades.

Those systems, the network of community-based residences and individually-tailored supports, are under assault. What has taken decades of work by parents, caregivers, lawmakers and self-advocates to build will be seriously undermined if the drastic cuts to the Office of Mental Retardation and Developmental Disabilities in Governor David Paterson's mid-year Deficit Reduction Plan are allowed to become a reality.

Like many people, I have heard the doom-and-gloom budget talk from Albany so often, I have become inured to it. I can't afford to ignore it any longer. My daughters are counting on me to pay attention.

I have four daughters. Two of them have developmental disabilities. Another faces lifelong effects of a brain trauma suffered as an infant. Right now, my wife and I, with the aid of community supports, are able to care for their needs. But we are realistic enough to know, someday, they may require more support than we can provide. Our youngest daughter, who shows signs of being profoundly intellectually disabled, may require personal care and other supports her entire life.

The programs that provide those supports, already stung by the elimination of the annual trend factor increase in funding, cannot sustain the kind of cuts Governor Paterson has asked for in his plan. Some providers may need to close programs or cut back on services. Some may find their only choice is to shut down entirely.

Programs will be consolidated. Private, non-profit, community-based supports will be replaced by more expensive, less efficient and, likely, less humane state institutions.

It won't happen overnight, but we have the grim memory of Willowbrook to remind us it has happened before.

Will my daughter live someday in a small group home in our community with individual attention paid to her specific needs, or will she be put away in some state-operated human storeroom?

Contact your state legislators and tell them she, her sisters and all people with developmental disabilities deserve better.

Look again at those pictures from Willowbrook. Many of the people who lived there are still with us, some right here in our own community. In the wake of those horrors, we, as a state, vowed to take better care of our most vulnerable citizens. We are still bound by that promise.

Tell Albany it is wrong to fix our budget crisis at the expense of the disabled.

(John Cleary is the parent of children with developmental disabilities and a writer/journalist who resides in the Southern Tier of New York.)