HARTFORD — Their plea was as simple as it was powerful.
Parents of intellectually disabled children told a legislative panel Thursday that unless funding was increased to the Department of Developmental Services, thousands of families would be marooned on a waiting list for apartments or group homes.
There are at least 2,000 families waiting now, and the number is growing. The only way a family can qualify for residential support for an intellectually disabled child is for the caregiver — the parents, in most cases — to die or become incapacitated.
“Could we have designed a crueler system?” said Tom Fiorentino of West Hartford, whose son, Dan, 24, has Down syndrome.
But the solutions have been elusive. Over the past seven years, the legislature has lacked the political will to increase the department’s $1.1 billion budget. In fact, about $30 million has been cut.
According to one estimate provided to the legislature last year, it would cost nearly $150 million over the next two years to provide the families on the waiting list with the services for which they qualify.
Last year, the legislature’s new Intellectual & Developmental Disabilities Caucus managed to find $4.4 million to pay for residential services for 100 families on the waiting list with the most pressing need.
But there are few if any openings in group homes or apartments managed by either the state or private contractors — and a portion of those 100 families are still waiting for placement for an adult child with intellectual disabilities even though they were singled out for the funding.
The disabilities caucus, which is gaining legislative members by the week and is now up to about 45, listened Thursday as an overflow crowd of respectful but emotionally drained parents at the second annual Family Hearing Day asked the panel to find more money, or fix a system that spends considerably more to care for a resident in a public facility than it does for a person with the same level of need at a private location.
Formed in February 2014 by Sen. Beth Bye, D-West Hartford, Rep. Jay Case, R-Winsted, and Rep. John Hampton, D-Simsbury, the caucus “fights for the interest” of people with developmental disabilities.
“What’s different this year than last is the families are not only asking for more money,” Bye said after the hearing. “They are asking us to have a five-year plan to deliver services in a way that meets the needs of more families. They are saying there is a problem with the way the money is allocated.”
The families want residential services now, or soon, for their children. Waiting until parents die, and then abruptly making their sons and daughters wards of the state, would devastate their fragile worlds, parents testified.
“What would happen to Spencer, then?” said Alison Jacobson, whose 16-year-old son is profoundly intellectually disabled. She is his sole caregiver, as she is for her husband, who has multiple sclerosis.
As parents get older, caring for an adult son or daughter with an intellectual disability becomes increasingly difficult, physically and emotionally, the families said. Having the opportunity to live in a well-run group home or an apartment — and visit at home on weekends — helps build independence and enriches lives, the parents said.
Rabbi Jim Rosen said the legislature has a duty to provide intellectually disabled citizens with housing opportunities after the parents on whom they had depended their entire lives are gone.
Several parents cited successes — strong programming at Chapel Haven, caring group homes run by Oak Hill — as examples of what needs to be replicated and supported.
Last month, The ARC of Connecticut and other advocacy groups joined in a call for the closing within five years of the Southbury Training School — the largest remaining state institution for developmentally disabled people — and several regional facilities run by DDS.
The advocates are asking that money saved from the closing of the state campuses be shifted to the private sector to significantly expand housing opportunities in the community.
Although admissions have been frozen at Southbury for 29 years and the population there has dwindled to 318, neither Gov. Dannel P. Malloy, the legislature, nor DDS has committed to a definite closing date. Many of the families of the remaining 318 residents do not want Southbury to close, and Al Raymond, whose bother, Duncan, has lived at Southbury for many years, reaffirmed that position to the panel on Thursday. The state is consolidating the Southbury campus, mothballing buildings as they empty out, and offering community placements to the residents, who have priority over those on the waiting list.
Any major shift from the public to the private sector would be a “race to the bottom” for wages unless a stable, decently paid workforce was part of the funding equation, said Jennifer Schneider, a spokeswoman for Local 1199 of the Service Employees International Union.
Workers at private group homes have not had a cost-of-living increase for seven years, said Schneider.
A Courant investigation in 2013 that revealed lapses in care, some of them fatal, at public and private facilities, noted that group homes suffered from high worker turnover and that companies had difficulty recruiting and retaining quality workers.
“We are on the same page as the families — there is a crisis with the waiting lists,” said Schneider. “But stability in the workforce has to be linked to the solution.”
