Families facing loss of respite centers, their ‘saving grace’

Every few months, Jim Schmitt and his wife take their 14-year-old twin sons to a state-run respite center in Putnam for the weekend. He calls it a saving grace: It’s the only time he and his wife spend together without their boys, who have autism and do not speak.

“You love your kids to death, but you wait for those weekends to be able to get away,” Schmitt said.

Schmitt’s sons were scheduled to go to the respite center Sept. 8, and he and his wife were thinking about taking a trip to Maine. But officials are planning to shut down the state’s 10 respite centers by Sept. 5, part of a plan to cut $1.6 billion from the state budget. Closing the respite centers, which serve 1,100 families a year, is projected to save the state just under $8 million over two years.

There’s a chance the cuts to the respite centers and other programs that help families that care for people with disabilities or illness will be averted. State employee union leaders and Gov. Dannel P. Malloy have expressed optimism that there could be a way to salvage a concession deal that union members rejected last month, creating the budget hole.

But with no guarantee of a resolution, respite center workers have gotten layoff notices, and families who serve as caregivers are wondering what they will do if the centers are closed.

“A great deal of the time when you have children with disabilities, you’re living like a couple who’s divorced, even though you’re not divorced,” said Maryann Lombardi, a Wilton resident who serves on the Connecticut Council on Developmental Disabilities and has a son with autism. One parent might leave home with the other children while the other parent stays home with the child with a disability.

“It’s a very difficult way to live,” Lombardi said.

A report released Monday by AARP’s Public Policy Institute highlighted the stress that people who care for relatives face. “Family caregiving is now viewed as an important public health concern,” said the report, which estimated that 711,000 people provided unpaid care to relatives in Connecticut in 2009. The report did not take into account those who care for people under age 18.

Most of the state’s caregivers are not served by the state programs facing cuts, but those that are could find themselves with few alternatives.

Joan Barnish, a spokeswoman for the state Department of Developmental Services, which runs the respite centers, said there are no comparable programs in the private sector, and the department does not have the money to develop an alternative.

Office of Policy and Management Secretary Benjamin Barnes, Malloy’s budget director, said last week that the respite program closure was difficult to avoid because it is among the few services provided to developmentally disabled people and their families that are not mandated by law. It was among the most difficult cuts he had to order, he said.

“I find it very troubling and it would be among the first [cuts] I would undo” if fiscal circumstances were better, Barnes said.

The administration assigned DDS to cut nearly $85 million from the current two-year budget, and the agency is laying off 446 workers. The department is also eliminating services provided by support teams that work with 1,200 families with children living at home.

Another respite program, which provides funding for caregivers of people with Alzheimer’s disease to pay for other people to care for their loved ones, is facing a 10 percent cut from the Department of Social Services.

“It’s an extremely effective program in terms of alleviating caregiver stress,” said Patricia K. Clark, executive director of the Alzheimer’s Association of Connecticut. “It would have a huge impact on these 169,000 caregivers who care for people with this disease.”

Barbara Pennell uses funding from the Alzheimer’s respite program to help pay for the adult day care program her husband, George, attends while she is at work. The funding covers 80 percent of the cost of one day a week, and she pays for two other days.

“To be honest with you, I don’t know what I’d do without this service,” she said. “It’s been a lifesaver for us.”

Being with people is important for her husband, and he enjoys his time at the program, Grasmere by the Sea. “And I’m at peace at work, knowing that he’s being taken care of,” she said.

It’s not safe to leave George alone, and Barbara Pennell would like him to go to Grasmere five days a week, but it’s costly. On the two days a week he’s not at day care and she works, neighbors drop in and, one day a week, someone comes to give George lunch. The other day, she leaves her job as a secretary at Fairfield Warde High School to give him lunch.

Schmitt, who lives in Pomfret, said friends and relatives can’t take care of his sons, R.J. and Gunnar. It’s important that they be cared for by professionals who understand sign language and know them.

“Without respite, we have nothing,” he said. “It’s a critical service.”

He called the center a godsend.

So did Sandy Quigley of Simsbury. “I don’t know what we’ll do, to be honest,” she said.

Quigley takes her 39-year-old daughter, Tonya, to the respite center in Windsor. Tonya, who has Down syndrome, loves it so much that a mention of a plan to go there in the future will send her packing.

“I can’t even tell my daughter right now,” Quigley said. “I don’t even have the words to say ‘You can’t go back.’”

Quigley said the respite center allows caregivers to rekindle their marriages. You can pay attention to a spouse without constantly tending to another person. And you can leave knowing your child is safe. There are private services that could care for Tonya, she said, but they’re too costly for her.

Malloy had to do what he had to do, Quigley said. “But he said he wouldn’t go after the vulnerable groups, and I do think this is one vulnerable group,” she said. “You don’t go after children. You don’t go after the elderly. And you certainly don’t go after people that are disabled.”

Quigley said she is frustrated that some unionized state employees rejected the concession deal, which called for a two-year wage freeze and health plan changes, since the alternative is people losing their jobs.

“We all have to make concessions somewhere,” she said.

Union members who work for DDS also expressed frustration Tuesday during a press conference outside the department’s Hartford Regional Center in Newington. The workers are members of the New England Health Care Employees Union District 1199, SEIU, and CSEA, both of which voted in favor of the concession deal. They warned that the services being cut are critical to peeple who need them.

In addition to the respite centers, department is closing 18 residential sites this year, including group homes, regional center units and units at the Southbury Training School, laying off the staff at six and redeploying the staff at the other 12 to save on overtime costs.

Rebecca Wentworth, who works at the Putnam respite center, said parents of clients don’t know what they will do.

“It’s not just our families and our children that are affected by these layoffs, but the people who have not a big voice to be able to get some help,” she said. “Their families are devastated by this and they’re losing a tremendous support network.”

1199 vice president Paul Fortier said members told him that the Torrington respite center has a full schedule until the middle of January.

“So now we have to tell these families that they have to find respite elsewhere that doesn’t exist,” he said. “Or they have to hire somebody at a rate they can’t afford.”