Among those of us who care deeply for and about people with developmental disabilities, I hope to hear emerge a new voice, ours, rising together for the benefit of all, harmonizing with reason, respect and hope, and transcending divisions, giving birth to a new era of creative cooperation.

Toward this potential, DD EXCHANGE is for conversation, civil sounding off, sharing of stories, experience, information, resources, and inspiration, giving and receiving support, and creative problem solving.

Finding Your Way Around

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Sunday, July 3, 2011

Progress or Pie in the Sky?

The governor has signed 5459 into law. As noted previously, it is a very flawed law. As I have been assessing the process by which this happened, I keep running into information which makes me question it, question the legitimacy of the process. I wish I were an attorney with such information at my disposal. I have so many questions!

Truly, there is no economic benefit to society, nor any to displaced RHC residents, to closing any RHCs, only benefits to vendors. That is the most generous assessment I have been able to make. Speaking with legislators who were lobbied by people who, themselves, are affected by intellectual disabilities, I am learning that some brought photos to show the legislators, photos of homes which they said had been bought for them by the state, homes that were fancier than those in which the some of the legislators, themselves live. One related that one of the self-lobbying group with id/dd had expressed such appreciation for her caregivers, salaries of $1,000,000 were being suggested.

These people are innocents; and so are the parents and guardians who buy into the promises made to them that their loved ones will live happy, near normal lives "in the community" if they only will leave the RHC or not insist on being admitted to one. Pie in the Sky! Many, instead, are truly stranded once they have left the safety of the RHC. Many others are stranded having been "diverted" from admission to an RHC. See the welcome article that tells the story of Thomas Felak by Cheryl Felak for her new list serve, meant to bring parents and guardians together, much as this blog is meant to do. Just click on this article's title.

I remember the days when our family thought my sister would one day lead a normal life. It was a hard goal to give up, but really, she would not have benefited if we had pushed her to "be normal," when she couldn't be. Yet, when we supported her just where she was in her own process , loving her unconditionally, she was able to continue making progress relative to her own potential, and be happy in that. Isn't that what underlies our dreams for our loved ones, that they be happy being who and however they are?

Aside from the personal, the broken hearts that accompany the broken promises and broken dreams, there is a societal consideration that should not be ignored.

Lets just suppose that the state could buy those fancy houses for people to live in the community plus staff them for their 24-7 care needs. How far would the money go? How many others would be deprived of services because all the money would be used up for the privileged few who got the fancy houses and primo services that these innocents think is due everyone? Compared to the numbers who can receive services when they are shared in RHCs, the numbers would be very small, indeed.

This is not to say that everyone who lives in an RHC does so because it is a way to stretch tax dollars, nor is it to say that everyone with id/dd should live in such a protective, inclusive community as an RHC, but RHC communities, by law, must & do provide excellent services , everything needed by their high acuity residents. They do have their place on the vast disability spectrum of needed services.