‘It’s a slap in the face’: Adults on the autism spectrum speak out about need for state support

Connecticut Families

WATERFORD – “I just think it’s kind of sad that there isn’t anything being done,” says 28-year old David Durlach who reached out after seeing a Connecticut Families report in November – about a young Newtown man who spends most of his time in his room.

“We need to stop allowing these kids to fall through the cracks,” says his mom, Judy Thomas.

Both men are on the autism spectrum…both have an IQ over 70…and both feel they’re being left behind.

“I think there needs to be a lot more done at the state level by politicians, the state representatives, the state senators,” says Durlach.

The Connecticut Department of Social Services offers a Medicaid Waiver Program for individuals with autism, with an IQ over 70, enabling them to receive supports.

But applicants, like Durlach, have been told there is a ten-year waitlist.

“It’s basically a slap in the face and you’re on your own until then,” he says.

According to an email, sent in response to our questions: DSS reports 134 individuals are part of the program while more than 1900 are on the waitlist. The agency is working on accepting clients’ application dates from 2012.

“Unfortunately that waiver is woefully underfunded,” says Michael Beloff, who, inspired by his son with autism, became a Chartered Special Needs Consultant in Stamford, helping families with financial planning.

These young adults – who Beloff says are in an “autism hole” – need support finding and keeping jobs.

“And because they don’t have the supports, families can’t afford to self-pay, a lot of these young people are sitting at home and their skills are deteriorating,” he explains.

DSS also writes: “We understand the frustration and concerns regarding the level of services and supports currently available…this is an issue not only in Connecticut but across the nation, as well.”

Beloff says new legislation is needed to allocate dollars differently.

“I think it will be a muddled challenge until families get together and advocate as a block,” says Beloff.

“I would like my life to be different in the way to have someone to talk to and turn to,” says Durlach, who lives independently and has a part-time job. But, he needs help with social skills and desperately hopes the system changes…sooner rather than later.

“I just hope there are more people like me that are able to express that to people like you and people in a position to help,” says Durlach.

Beloff says this is a confusing issue where Connecticut offers a “mish-mash of benefits and services”. He points to Massachusetts, New York, and New Jersey as states that have a more robust funding stream to help these individuals.

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