Christine Stuart photo

Joe Duffy is 70. He worries what will happen to his 30-year-old daughter, Kate, who has multiple developmental disabilities, when he dies.

“This is really a public health emergency, especially in the area of housing,” Duffy said.

He said they’ve been told their loved ones will stay at home with them until they die, but “we’re not going to be around forever.”

CTNJ file photo

Duffy said there’s no transition policy in place and placement is usually done by emergency, which in many cases is the death of a parent or guardian. In any other context that would be considered “cruel and unusual punishment,” he said.

Leslie Simoes, executive director of The Arc Connecticut, said she knows families who have been on this emergency wait list for housing for eight to nine years. If someone isn’t suited to live in a group home and can remain mostly independent, then there aren’t any services for them provided by the state Department of Development Services.

She said the system is set up in such a way that it doesn’t meet individuals needs because it either offers a group home placement, or nothing. There are many individuals that don’t need that 24-hour custodial level of care.

But the problem is when these individuals, if they’re lucky enough to qualify for services through the state, only get “day service” money. There’s nothing to meet their residential needs and there are more than 2,000 people at the moment on the waiting list, Simoes said.

“We do not want to be regarded as a bargain-basement approach,” Duffy said. “Our people, we feel, are as informed as anyone else who needs a hand up. That’s why we’re all here today.”

Lisa Roland’s 19-year-old son has Down Syndrome and she is looking for meaningful employment and housing opportunities for him.

She said she’s looking for ways the state Department of Developmental Services can use its more than $1 billion budget effectively. She said her son is fairly independent and doesn’t need a group home or 24-hour care. She said she wants some of the money the state saves when it moves a person out of institutional care at Southbury Training School to be spent on services for individuals on the housing wait list.

Roland said she will need to start applying for services for her son when he turns 21. Until then he receives care through the educational system.

“We’re staring into the abyss,” Roland said. “And we’re scared.”

She said they’ve already decided to sell their West Hartford home and move closer to the center of town because there’s no transportation options where she lives and her son can’t drive, but he can use the bus.

Walter Glomb of Rockville said he has a 25-year-old son with Down Syndrome who, like Roland’s son, doesn’t need the 24-hour care that the legacy system provides in institutions and group homes.

Glomb said he’s part of a group of parents who frequently shares creative housing ideas for their loved ones and would be happy to share those thoughts with lawmakers.

“While the gears turn slowly at DDS and the legislature, the clock doesn’t stop for us,” Glomb said.

The legislature approved a $30 million reduction in the Department of Developmental Services budget last year and Gov. Dannel P. Malloy did not propose restoring it this year, but parents who attended the public hearing Friday were not fazed.

Simoes said these parents are in this fight for the long haul and the formation of the Intellectual and Developmental Disability Caucus was just the first step in getting policymakers to understand what they need to do in order to make a difference.

“It’s really a larger systemic issue than the $30 million cut,” Simoes said. “It’s a system that really needs to be overhauled.”

She said the governor has the ability to turn the funding system on its head by closing Southbury Training School and placing the 353 people who live there into group homes in the community. But families of those who live at Southbury are against moving their loved ones from a setting they’ve known for years. There are some who have even argued opening the sprawling campus to new admissions.

It costs the state more than $380,000 per person. Residential housing the community costs about $120,000 per person.

But Simoes said this isn’t about quick fixes. She said establishing the caucus and educating lawmakers is part of a long-term, five-year strategy.

“This is like trying to turn the Titanic,” Simoes said. “You can’t do that.”

The Department of Developmental Services said Friday that it’s working on re-balancing the system with the resources it has.

“For the last three years DDS had been actively engaged is systems change working to move our services away from costly models to person centered supports,” Joan Barnish, a spokeswoman for the agency said. “Connecticut DDS is recognized nationally as a leader in developing family and person centered supports.”

Sen. Beth Bye, D-West Hartford, who co-chairs the newly formed caucus, said she was impressed with the turnout Friday and believes steps can be taken this year to help families.

She said this governor understands supportive housing better than previous ones and she’s confident something can be done to turn the current system around.

“It made me look at the budget a little differently,” Bye said.