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Parents with developmentally disabled children fight new regulations

By ANNA MEILER

UTICA, N.Y. (WKTV) -- For many parents, their kids grow up, leave home and start their own lives. But, for parents with developmentally disabled children, their job never ends.

New regulations are forcing aging moms and dads to ask a painful question. Patricia Vilello wonders what will happen to her 38-year-old son with Down Syndrome if she isn't there to care for him.

"As a parent it causes a lot of sleepless nights," said Vilello.

Tommy used to be on a residential placement list through the ARC, but the state created a priority list six months ago that overrides it, which means Tommy could wait longer for a group home.

"The state does not want to open any more certified group homes. They're telling the parents to be creative, have your family and friends involved with taking care of them after we're gone. It's a 24/7 job. People aren't going to turn their lives upside down," said Villelo.

Cuts are also threatening structural workshops that Tommy attends three days a week at the ARC.

"It gives him a job, a place to go every day, mingle with peers, earn some money of his own. Everyone needs that to feel worthy," said Villelo.

Locally elected officials organized a meeting to hear their concerns Friday.

"I think what we're asking is let's revisit this. Let's see what the issues are whether it's funding, whether it's federal policy, whether it's state mission that has somewhat evolved and let's continue to do something that works for the individuals with developmental disabilities as well as the families," said Sen. Joe Griffo, (R) 47th District.

Villelo hopes the state will listen.

"Our kids are human beings. They're our children. We don't want to see cutbacks that are going to adversely effect how they live. It took 60 years for parents to get these programs for our kids and now it's like we're fighting all over again," said Villelo.

The Deputy Commissioner and Regional Director of the Office for Persons With Developmental Disabilities also attended that meeting.

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