The reaction to my post last week after the NY Times' article on supports for people with developmental disabilities has been interesting. For the most part comments, notes and conversations have been positive. Some people have been thankful that someone is speaking up about the issues raised in the article. Not everything has been positive however. I've had some people tell me that I should stop writing about any of these issues, that all I'm doing is drawing attention to the issue and this will cause the articles and coverage to continue. What comes through in these conversations is fear. Fear of the press, fear of elected officials fear of state agencies and fear of people in power generally. It's sad. So I don't think I'll be quiet.
I made some errors in the past week myself while researching the article and found out it is easy to do. That's why verification and good fact finding is so necessary and important. We all need to be careful.
My biggest gripe with the article continues to be assumptions, inferences and comparing Community Habilitation to home care and Direct Support Professionals to home care aides. Apples and oranges as they say and good research will bear that out. These are different services. The article also tries to compare Direct Support Professionals to home care aides and other 'caregivers'. This is really inaccurate. Direct Support Professionals are not caregivers or at least they shouldn't be and that is not what the state is paying for. They are trainers, teachers, counselors, behavior support staff and much more. The last thing people with developmental disabilities want is to be taken care of in the community. The people I know want their independence and want assistance and support to make that happen.
A friend of mine who's the parent of children with developmental disabilities said the following to me: "I take offense at the dismissive tones the reporter uses to describe community habilitation, as if this is an unworthy service that exists solely for its profit potential. It is undeniably true that many New Yorkers are living with their families or in independent settings only because of supports like this. It is difficult, specialized work, and the article's implication that anyone can do it (why not just pay a relative to teach people to brush their teeth?) is an insult. Again, unsaid but left for inference, is that these poor, disabled people would just be better off if the state took them off to a nice, clean facility and cut out the middleman seeking to profit from their problems."
On the difficult issue of executive compensation, here's another quote from my friend: "If my bank president or business leader makes an error in judgement, the enterprise loses money, customers, market share, etc. If the executive director of an agency that provides supports to my daughters makes an error in judgement, programs that keep my daughters safe, involved in their communities and advancing towards ever greater independence could go away. The stakes are high. The pressures are almost unimaginable. Nonprofit executives face all the responsibilities of the leaders of any enterprise, plus the knowledge that the course of lives of individuals and families absolutely dependent on their judgement is at stake. It takes special people to take on that challenge. I can't think of a single one of the human service agency executives I have known who was in it for the money."
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