Respite services for families of people with intellectual disabilities being cut in Massachusetts

From The Boston Herald:

The Westwood Respite Center will close its doors next weekend, leaving 68 families of adults with developmental problems without their home away from home.

The villain?

Massive cuts in the budget of the Massachusetts Department of Developmental Services.

The Westwood Respite Center, operated by Toward Independent Living and Learning Inc. (TILL), is a nonprofit contracted by the Department of Developmental Services (formerly the Department of Mental Retardation) that aids 32 communities in Eastern Massachusetts, including Boston. It offers adults with Down syndrome, autism and other special needs a place to hone their social skills while giving their families a break from caretaking responsibility.

Those who rely on the Center are outraged. “The zoo has gotten funding back. People with disabilites are not on the same level?” said Peggy Burns of Waltham. “Where are their priorities?”

Her daughter, Ellen Burns (pictured with her mother Peggy), 30, has been visiting the respite home for nearly 15 years. Ellen, who has Down syndrome, keeps her weekdays packed with a job at the Center for Corporate Citizenship at Boston College, visits to the gym and outings with her parents. But her father, John Burns, 68, of North Reading, said it can’t supplement what she recieves from Respite.

“I have her on regular weekends and we do things, but I’m her father not a peer,” John Burns said. “It’s a special thing this respite, going to see young people. They don’t want to be around old geezers. She wants to be young. Even if they have a disability they want to be young and be around young people.”

“I need a life,” said Ellen Burns. “I get lonesome.”

Ten years ago Westwood Respite was open seven days a week. As government purse strings got tighter, the center was forced to cut back to three days a week and create a waiting list for families seeking its services. Dafna Krouk-Gordon, founder and president of TILL, said competing for funds has been a roller coaster ride.

“For 22 years the human service industry has not gotten a single cost of living increase. We have not gotten increases and we have found ways to make things work, which is bad for the industry because they say, ‘See, you don’t need more money,’ ” Krouk-Gordon said.

If the Center’s $172,000 budget is not restored, TILL will have to sell the property. “We can’t use it. People will be out of jobs. And the families will be left totally without a program,” said Krouk-Gordon.

This reality is devastating to Beth Easter and her husband, Tom Danko, of Watertown. The center offers an outlet for their son Michael, 20, who has autism. “Michael needs to be learning how to survive without us,” said Easter.

Staff at the center help individuals learn social skills and how to manage independence.

“Every parent looks forward to that time when their child will be grown up and independent and do things on their own,” said Linda Norton, head of Westwood Respite. “We are talking about parents who will be doing that parenting the rest of their lives, and who will do that when they are gone?”

Michael’s autism will mean he will never be fully self-reliant, said Easter. “He just needs practice. As long as I’m around I’m going to be the little crutch,” she said.

In two years Michael will age out of educational services, and without the respite center Easter fears his progress will deteriorate.

“It is like they are putting us on the street,” said Ellen. “It is a big mistake, a great big mistake.”