Changes in the field of developmental disabilities are coming fast and furious, and they are affecting some mainstay programs offered by local agencies.
The last seismic shift in the world of developmental disabilities happened over 40 years ago, when hundreds of thousands of disabled New Yorkers were deinstitutionalized. A new state-supported system of programs and supports for families was born, with things like sheltered workshops, which are supervised workplaces, filling the gap.
Now comes another shift. The federal government’s goal is now total community integration. And New York state is following suit, promising more choice for these individuals, in all aspects of their lives -- from where they live, to where they go to school.
Jack Campbell, executive director of ARC of Madison Cortland, says no one can argue with these new goals. But he says there’s been no help for agencies like his, which need to figure out how this this new world for the developmentally disabled will shake out and impact them.
"What the federal government and the state of New York seem to think is that you can change a system that you created over 40 years, in six years without infusing a significant amount of money into system to transform that system,” said Campbell.
So, to comply with new regulations and rate structures from New York state and the federal government, the Arc is changing the way services and supports are delivered. For example, the workshops that were offered as a five-day-a-week supervised workplace will be phased out next year. They’ll be replaced with programs that offer support for a few hours a day, two or three days a week. And Campbell says the shift will be difficult.
“When you have someone who’s multi-disabled, who’s been in the workshop for 25, 30, 40 years, that operates at eight percent of the productive norm, what employer is going to take -- with the minimum wage going where it is -- is going to take on someone who is giving them eight percent of the 100 percent of productivity to keep their business successful. That’s the problem.”
Campbell says families looking for support are also finding funding cuts from the state for the service they need. He says something called rate rationalization, which now provides $39 an hour for services that cost $60 an hour to provide.
"It’s code word for cuts, that’s what rate rationalization is,” said Campbell.
The changes are already affecting some individuals.
The story of James Jewitt of Oneida, is a successful one, from the government’s point of view.
"I live in my own apartment, and I pay my own rent. The way I’m able to do that is through the Social Security system,” said Campbell.
Jewett has a dual diagnosis: post-traumatic stress disorder, as well as a learning disability. He spent six years in an institution until he turned 18, and after that transitioned into the workshop program. He can’t access it anymore though because of the changes, so he simply lives on his own.
"I’m going to tell you my day. When I wake up in the morning I get up. I take my shower and brush my hair. I sit in my chair. I go on my computer for a couple of hours. And then I sit in my home. I look at my walls. That’s basically what I do all day,” said Jewett. “My life is a complete blank right now."
It wasn’t that way when he took part in the workshop at ARC of Madison Cortland, which taught him skills to get a job.
"If I go to a regular job, they’re going to give me a book, here read this, figure out what to do. I can’t do that. It’s not my way of learning. The thing with the ARC they’re teaching me how to get to that point where I can put it together myself,” said Jewett.
And he wants more in his life; he was to be excited by the prospect of another job, of more education, doing something that gives him joy.
"The possibilities are endless for me. But the problem is, I need structures to get to those possibilities, and I don’t have those,” said Jewett.
In the end, Campbell says his organization is looking for new sustainable ways to provide opportunities for individuals like Jewett. For example, they’re using a state economic development grant to create a community supported agriculture business to employ some of these individuals. But Campbell says it won’t help everyone.
“When you get to a population that’s developmentally disabled, and you’ve got very wide swings of skills sets and abilities, what New York has done, is they’ve created this success and forced us in this direction to take care of a few at the expense of many.”
