For CT adults with developmental disabilities, housing help unlikely until parents die

Scott Langner was so excited when he learned he could one day move into an apartment with friends that he soon began talking about the invitations he’d use for his housewarming party.

He’d seen his older brother and sister go off to college and then their own apartments, and his parents hoped that Scott, who has developmental disabilities, autism and a seizure disorder, would eventually be able to move into a home with his friends, with supports funded by the state Department of Developmental Services.

But last year, they learned that was unlikely to happen. His mother, Collette Bement Langner, said they were told that DDS no longer has the money to provide him residential supports, and that Scott would likely live with his parents until they die.

Now Scott, 27, is reluctant to even consider developing skills that would help him live more independently. When his mother suggested learning to cook, he told her, “I don’t want to talk about that anymore. That makes me really sad. I don’t want you to die.”

“He now feels that in order for him to move into an apartment, it will have to mean that we had died,” she said.

Langner worries too: If her son can’t get support to live more independently until she and her husband die, they won’t be around to help him make the transition, to help those providing support understand the best way to solve problems that come up or make sure they know how to handle his seizures. And under the department’s current policy, he’d have to move into whatever housing were available, even if it’s across the state from where he lives, works and helps coach soccer.

“You could lose your parents, your home, your job and your friends all at the same time,” she said.

The erosion of state funding for people with developmental disabilities has left many parents worried about what will happen to their children when they die or become unable to take care of them.

The two-year budget Gov. Dannel P. Malloy and legislators adopted last year left DDS’s budget $36 million below what the department had projected it would need to maintain current services, and advocates and service providers say that followed two decades of chronic underfunding. The department handled the cut by reducing provider rates and individual budgets and cutting staffing, spokeswoman Joan C. Barnish said.

In a letter to clients and their families last April, DDS officials offered those waiting for services little hope and explained that “resources need to be focused on emergency cases.”

Priority for funding is given, they wrote, to people in three situations:

• Those with an emergency need for services, such as when a caregiver dies “and there are no other family members who can step in to help”;
• Someone at risk of imminent harm, such as from abuse or neglect or an extraordinary health and safety issue;
• People in a Medicaid waiver program whose health and safety needs are not being met.

“The majority of individuals waiting for residential services do not meet the above criteria,” Commissioner Terrence W. Macy and Deputy Commissioner Joseph W. Drexler wrote. “Without additional funding to address the waiting list, families who do not meet these criteria will continue to wait for services.”

“We die agonizing”

Hundreds of families, many waiting for services, showed up at the state Capitol complex Friday to implore lawmakers to restore funding for developmental services. So many attended that they filled multiple hearing rooms, including the largest one in the building.

One woman told legislators that she wakes up nearly every morning to her 15-year-old son banging on the walls, so loud that neighbors threaten to call police. Her son, who has developmental delays, routinely eats his feces, and his doctor has said he needs constant monitoring. But she said her family is unable to get residential services for him. She said they’re among the state’s “lost families,” stuck between the school system and the developmental services system and unable to get residential services.

Another mother choked up as she told lawmakers about her son, “We will be too old to take care of him, and I’m asking for your help.”

Joe Duffy, whose 30-year-old daughter has intellectual disabilities, said the state faces an emergency, particularly in housing, and said DDS is in “fiscal paralysis.”

“We are told that our loved ones will stay home until we die. They’re welcome to stay home forever. We’re not trying to get rid of our beloved children, adult children included,” Duffy, 70, said. “But there is that fact of mortality.”

Waiting until parents die is troubling for parents — and worse for their children, he said.

“We die agonizing about where our loved ones will go,” he said. Meanwhile, their sons and daughters will suffer the double trauma of losing their parents and lifetime home at once.

“Anyone who knows anything about people with intellectual disabilities knows that stability and continuity are very important,” Duffy said.

Walter Glomb, whose son Nick has Down syndrome, said groups of parents are working to develop creative housing options, such as having their children live in their own homes or rental homes with support.

But Glomb said that even creative solutions will require some help from the state. “Very, very, very few of us have the personal resources to see that our children are cared for for whatever time they’re going to live beyond [our lives],” he said.

In a statement released after the hearing, Barnish, the DDS spokeswoman, praised the families for their advocacy. The hearing drew many legislators, including some who have formed an Intellectual and Developmental Disability Caucus.

“DDS appreciates the frustration when residential supports are not available for proactive supports allowing people to naturally progress towards more independence while living with their family or moving to their own home in the community,” she said. “DDS will continue to balance the needs of individuals and their families within existing resources.”

“Haves and have nots”

Leslie M. Simoes, executive director of The Arc Connecticut, an advocacy organization, said funding cuts to an already fragile system have created “a time bomb waiting to go off.”

But part of the problem, she said, is not the total amount of funding, but the way DDS’ budget of more than $1 billion is spent.

“We have a system of haves and have nots,” she said.

Simoes and other advocates note that the state spends significant sums of money operating six institutions with relatively few residents. Southbury Training School has about 350 residents, and five regional centers house fewer than 200 people.

The per-person cost for a resident at Southbury Training School was $330,675 in 2010, and slightly more at the regional centers, according to a report prepared for the legislature’s Program Review and Investigations Committee. Group homes cost significantly less, particularly those run by private nonprofit agencies rather than DDS.

None of the state-run institutions accept new clients, and the terms of a 2010 legal settlement requires the state to evaluate all Southbury Training School residents for community placement. Residents and their guardians can decide whether to move or not.

“There’s money in the system. It just depends on the political will to make changes to really reallocate what money we have,” Simoes said.

But families of Southbury residents have said they’re wary of the prospect of their relatives going into the community system, which even service providers consider starved for resources.

Simoes praised the care provided at group homes but said many people with developmental disabilities don’t need 24-hour supervision and don’t want to live in that type of setting.

Yet even when families are willing to pay housing costs and just need DDS to provide supports, Simoes said, the department has said it can’t help because it lacks the resources.

“These families are going to care for their kids until the day they die, which they will do willingly,” she said. “But then they know that once they die their child is going to have to withstand the loss of a parent and then have to go into a new home on top of that. That’s inhumane.”

“He’d have a life”

At one point, the Langners thought they had a solution: Along with the parents of four of Scott’s friends, they would build, rent or buy a home. Their five sons could handle their own hygiene and things like cleaning. What they’d need from DDS, Collette Bement Langner said, would be some support, like help with grocery shopping and cooking.

She said the department told them that wouldn’t be possible because they’re not considered an emergency.

“We said, ‘OK, if we could just arrange for all 10 parents to all die at the same time, then our five sons could get to live together,’” she said.

Langner wants her son to live with friends, rather than in a group home. Scott has many skills and she thinks he doesn’t need many hours of support. He has a job, participates in Special Olympics bowling, track and field and floor hockey, and coaches in the Tolland soccer program he participated in growing up.

But he’s naïve about the world and easily taken advantage of, his mother said. He’s afraid of the stove. And he’s prone to seizures, something that always worries his parents.

When he’s with his friends, Scott is animated, friendly and outgoing. But at home with his parents, he’s more like a sullen teenager, his mother said, favoring one-word answers.

“He’s isolated,” she said. “If he were able to be in his own apartment, he would have friends he could talk with, interact with, plan things with.”

“He’d have a life. And he doesn’t have that now.”