Families of children with developmental disabilities are lobbying lawmakers this year to close six state-run institutions where more than 500 individuals with intellectual disabilities reside.
The campaign to close the Southbury Training School and five regional institutions by 2020 is being spearheaded by The Arc and the Connecticut Council on Developmental Disabilities.
The advocates say it’s not fair that the state is spending upward of $442,265 per person, per year, at the regional centers, $356,350 per person at Southbury Training School, and $338,730 per person at public group homes when there are 2,000 individuals on a waiting list to receive out-of-home residential support services. Some of the individuals on the list have been waiting for 20 years.
To care for the 937 individuals in these public settings it costs the state $343.86 million per year, according to advocates. They said the same services in the private sector cost between $88,000 and $150,000 per year, per person.
According to the Department of Developmental Services there are 318 residents at the Southbury Training School and 46 of them plan to relocate during the next 18 months. According to advocates, there are an additional 191 individuals at the five regional centers and 366 in public group homes.
Leslie Simones, executive director of The Arc, said that based on a settlement agreement her organization entered into with Southbury Training School, it was determined that 294 of 319 residents could be supported in a community setting. For those 25 individuals who could not be supported in a community setting, “the primary reason that was given was life-ending or life-threatening illness or disease.”
Since the approval of the settlement agreement with the court, 42 individuals have successfully transitioned from Southbury Training School to a community setting.
“All class members are happy in their new homes and there have been no instances where a guardian or an individual requested to return to Southbury Training School,” Simoes said.
But Martha Dwyer, whose brother Tom Dwyer resides at Southbury, disputed that statement.
“A number of guardians who have moved their family members into the community have not been happy with it,” she said. “They haven’t asked to return to Southbury because they can’t return to Southbury, but they have indicated to people who do advocacy for them that they are not happy being in the community.”
She suggested there are different levels of need that aren’t being addressed in community settings.
But private providers like Barry Simon, president of Oak Hill, said that’s absolutely not true. He said there are more than two dozen private facilities that can offer high-quality medical care to individuals with multiple disabilities.
Simon and other private providers have been dealing with reductions in state funding for two decades.
“Community agencies are already struggling to make ends meet while providing high quality, efficient services to individuals with disabilities,” Morna Murray, president and CEO of Connecticut Community Providers Association, said. “We look forward to working with the Malloy administration, the legislature and community partners to create a rate system that does not pit one provider against another, but provides adequate funding to maintain a system of care for the most vulnerable among us.”
Simoes said there is no justice in a system that only provides services to those who already have services.
Shelagh McClure, chairwoman of the Connecticut Council on Developmental Disabilities, said the campaign to get the legislature to close these six institutions and to instead use the money to help reduce the wait list and make sure everyone has services in the community is a campaign of “hearts and minds.”
“It is not a just system when only a small number of people get services at a very high cost . . . it means that a large number of people can’t get services because there’s not sufficient funds,” McClure said.
For Simoes and McClure it’s both a fiscal issue and an issue of fairness.
“The private provider system has been starved for resources for over 20 years,” Simoes said. “It is time Connecticut pay private providers the same rate, for the same service. A rate that fully covers the cost of service.”
These types of public institutions for developmentally and intellectually disabled individuals no longer exist in 17 states and the District of Columbia.
“In this fiscal climate it is absolutely irresponsible for the state of Connecticut to continue this outdated practice,” Simoes said. “Enough, is enough.”
But a union representing state employees at those facilities doesn’t believe closing them is the answer.
“Focusing on closing a facility that is already set for closure is not helpful to those families seeking residential placement for loved ones,” Jennifer Schneider, communications director for SEIU 1199, said.
“We believe there is a wide range of need among people with disabilities that require a wide range of services in both the public and private sector,” she added. “We encourage increasing, not narrowing, the scope of services that need to be available to those with disabilities and their families.”
Earlier this year, lawmakers approved an additional $4.4 million to help open 100 more residential slots for individuals on the waiting list who have parents over age 70.
Simoes said she handles the calls every day from parents scared they are going to die and their child isn’t going to have the services they need.
“The families at Southbury right now through our settlement agreement are getting a Lexus package, that the 2,000 families that are on that waiting list are never, ever going to get,” Simoes said. “It really is about justice.”