Elizabeth Regan
Patrick Bastien of Cheshire (Elizabeth Regan)

Parents, grandparents and siblings who are struggling to care for adult family members with severe intellectual and developmental disabilities are asking for the state’s help to plan for the day they will no longer be able to protect and provide for their children.

They told members of the legislature’s Intellectual and Developmental Disability Caucus Thursday that the so-called waiting list for a spot in a group home or smaller residential setting is a smokescreen.

Instead, they say the Department of Developmental Services most often provides housing only when a guardian dies. It’s a system that leaves caregivers fearful about what will happen to their children when they are gone and leaves bereaved children alone to endure the transition to a new living situation.

Dawn DeMatteo, the single mother of an adult son with severe disabilities, told members of the legislature’s Intellectual and Developmental Disability Caucus Thursday that chronic underfunding by the state has left those who cannot care for themselves in a state of limbo with no end in sight.

According to DeMatteo, the situation became even worse when some parents – like herself – found out they’d become ineligible for placement at a group home once they accepted what they thought was temporary financial assistance to get by at home until a spot opened up.

DeMatteo said she uses DDS funding to pay for Anthony’s care while she goes to work to support her household. She didn’t know taking the money meant her son would be removed from the housing waiting list.

DDS spokeswoman Joan Barnish said in an email that the waiting list is reserved for people living on their own or with family who do not receive any residential supports. An individual receiving $20,000 or more in residential support would be moved to a different funding category.

State Rep. Mitch Bolinsky, R-Newtown, was one of many caucus members who showed support for the families when he called the system “alarming” and “borderline cruel” in the way it leaves parents to die without knowing what’s going to happen to their loved ones.

“Because we’re working without a plan. I have to advocate for a planning process to occur,” Bolinsky said to applause from the room packed full of advocates for people with intellectual and developmental disabilities.

There are more than 2,100 of the state’s neediest residents waiting for housing spots to open up so they can live among their peers in group homes or smaller residential settings operated by the Department of Developmental Services or private providers.

While lawmakers appropriated $4 million in additional funds to help address the housing backlog last year, Gov. Dannel P. Malloy took away $1.8 million when he announced the first round of rescissions in September.

The $4 million appropriation was the result of support from the Intellectual and Developmental Disability caucus as well as advocacy by caucus founder and Appropriations Committee Co-Chairwoman, state Sen. Beth Bye, D-West Hartford. The caucus, which began in February of last year as a bipartisan coalition of 27 lawmakers, is now up to 59 members.

The funding was earmarked for families with caregivers aged 70 or older.

There are 156 families that fall into that category, according to Christina Gellman of the legislature’s Office of Fiscal Analysis. By July, the needs of 83 of those individuals had been “fully met,” Gellman said.

Gellman could not specify how many future placements will be affected by Malloy’s $1.8 million cut.

“The cut will not affect any existing placements, but certainly it could delay a new placement and it limits available funding,” she said.

Another 80 placements – separate from the funding initiative for elderly caregivers – were possible because of vacancies created due to death, relocation or changes in living situations.

DeMatteo bristled at the term “waiting list,” which she said evoked the idea of standing in line at the deli counter of a supermarket where you know how many people are in front of you.

“It’s not a waiting list. I cannot call DDS and ask where I am on the waiting list, as you would be able to know if you were at the deli counter,” she said.

A June DDS report said that 638 of the 2,100 people on the waiting list have been identified by the state “emergency” or “priority 1” placements. Emergency status is for those who need immediate placement while priority one status covers those requesting placement within one year who have been determined to have the most pressing need for services.

The Department of Developmental Services differentiates between the “waiting list,” which they say comprises the 638 emergency and priority one individuals, and the “planning list,” which includes the rest of the 2,100 people who have requested services within 2 to 3 years.

However, advocates say all 2,100 people are waiting and, they fear, will continue to do so.

Despite the outcry from many on the waiting and planning lists who say they’ve been stuck there for years, Gellman told lawmakers that 27 of the families eligible for a piece of the $4 million appropriation declined residential supports.

Some lawmakers in the Intellectual and Developmental Disability Caucus questioned why that many families would decline services after signing up for the waiting list.

According to the email from Barnish, the 27 eligible individuals who declined a spot on the waiting list did so for a variety of reasons.

“Some of the families expressed that residential supports were not needed with their current supports in place. Other families explained that they had arranged an alternative care plan for a sibling to take over as primary caregiver when the parent could no longer do it. One individual moved out of state to live with a sibling when their parent and primary caregiver passed away,” Barnish said.

But DeMatteo and others tell a different story about why some people came off the waiting list.

Susan Bastien, a 65-year-old retired teacher from Cheshire, told lawmakers the Department of Developmental Services is putting her in a difficult position as she seeks placement for her adopted son, Patrick. She said the 34 year old is blind, quadriplegic, epileptic and has an intellectual disability, requiring constant care to monitor his tracheotomy tube.

But there’s no space available for Patrick in any of the state’s group homes tailored to those with intellectual and developmental disabilities, according to his mother.

If she accepts a place for him at a nursing home with less comprehensive and individualized support, she said, the state would consider its obligation fulfilled and would remove him from the waiting list for more appropriate housing.

“I don’t want my son living in a nursing home. So I’m doing the best I can at home,” she said. She worries most about those couple of hours at night when there’s nobody to monitor Patrick’s tracheostomy tube while she sleeps. 

“No parent should have to go to sleep at night wondering if they’re going to wake up and their child is dead beside them because there is no nurse and they have to get two hours of sleep,” she said.

State Rep. Gail Lavielle, R-Wilton, said it is “abhorrent and scandalous” for people to lose their spots on the waiting list for the reasons described by DeMatteo and Bastien.

Barnish said in an email that people who receive more than $20,000 but whose “needs are not met” are shifted to another list for “Other Residential Needs.”

“In FY15, approximately 130 individuals on the Other Residential Needs list had their needs met during the year and came off that list,” she said.

According to DeMatteo and Bastien, it comes down to what one considers meeting somebody’s needs.

DeMatteo said her son has care while she’s at work, but that’s not meeting his needs for a secure future.

Bastien said her son could go to a nursing home, but that’s not meeting his need for personalized, comprehensive care.

The Department of Developmental Services has a $1.1 billion budget. As of June, it provided funding for residential supports to 8,128 people. Over 80 percent received services through private providers while the remainder used public supports such as those available at the Southbury Training School or the state’s five regional centers.

Barnish said she did not have a readily available analysis of the amount the agency spends on private provider services versus public services.

“…although direct care costs in public are easily attributable and private sector funding is easily obtained, many associated administrative costs are spread out over both sectors, for example case management services,” she said.

Advocates, however, said last year that they found it costs between $338,730 and $442,265 per person for one year of public, out-of-home residential services. Private out-of-home services cost between $88,000 to $150,000, they said.

A March memo to lawmakers by a group of advocates found $14 million in potential savings by bringing public staffing ratios in line with those used by private providers. It also recommended operational efficiencies at Southbury Training school that could yield an additional $5 million in savings.