The group met to hear stories from parents who are finding out that their adult children with mental disabilities such as autism may not be getting any more state assistance for independent living. Many were told that their adult children, who have been living independently, would have to move back home.
“Bringing adults with disabilities home after they have been successfully living in the community is not only cruel, it is a huge waste of the investments the public schools, DDS and families have made in these individuals over the years,” Lynn said.
Arezzini's son, Karl, will be unable to continue his time at Chapel Haven, a 40-year-old program in New Haven that helps developmentally challenged adults transition into the wider community, if funding for the program isn’t re-established.
“Why are we spending money to educate these individuals? Why do we have special ed budgets in every single town to educate these guys if when they graduate or age out of the system they go off the cliff because DDS is not set up to do what they are supposed to do?” asked Lauralyn Lewis of Old Lyme, the mother of an autistic son who is currently living independently and working in New Haven.
In 2012, $30 million was cut from the DDS budget, Lewis said and only $5 million was added back this year.
The concern for many parents at this meeting was that the state DDS and Department of Social Services are underfunded and therefore unable to support the people who have been on waiting list for years.
“I am very concerned that DDS assumes that family members can step in and pay all of this out of their own pockets,” said Barbara Laman of Greenwich, who’s 23-year-old son is currently a client of DDS and lives in New Haven with the department's help.
Laman explained that she is a single working mother and would be able to support her son Brett for only a year before depleting her savings.
“DDS needs to cover my son’s basic needs,” Laman said. “They need to be flexible with funding so that he can use the money that he gets to meet his needs.”
For Justin Lewis, a 23-year-old with Down syndrome, DDS isn’t giving him the help he needs. Because it is underfunded, the department told he would have to move home with his mother.
“I have a life in New Haven, I have a lot of friends, I know how to get around. But even with everything I still need help,” Lewis said. “DDS wants me to move back home. This is not what I want to do.”
Another concern was voiced by Stamford father Michael McNulty, who has had many things go wrong with the care needed for his daughter. He said the state is currently operating under a “one-size-fits-all” solution when it should be working on a “just-right” solution.
“You can’t just say this is how it’s going to be for everyone,” McNulty said, because that didn’t work for his daughter.
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