Tug-of-war over limited state funds for CT’s developmentally disabled

Connecticut Department of Developmental Services

Southbury Training School is a home for people with intellectual disabilities.

The long-running debate over institutionalized care for the developmentally disabled took a new twist Wednesday as it ran headlong into the state’s budget woes.

Armed with a court expert’s new recommendation to close Southbury Training School, several advocacy groups argued Connecticut unfairly spends too much of its limited resources on a small class of institutionalized disabled while ignoring thousands awaiting community-based care.

But parents of clients of the training school and other state facilities fired back that these settings are crucial for their children’s proper care. Despite the big deficit looming over the next state budget, the solution for one group, they added, can’t come at the expense of another.

“There is enough money in the system to support everyone in it and those on the residential and planning waiting lists,” said Leslie Simoes, executive director of The Arc of Connecticut. “What is lacking is the political will to make the system change.”

“We have an outdated system of ‘haves’ and ‘have-nots’ that doesn’t reflect the needs of families and individuals” with intellectual and developmental disabilities, Simoes added.

Advocates for a wide range of health care and social service needs are bracing for cuts after Gov. Dannel P. Malloy and some legislative leaders have insisted they will close the $1.3 billion projected deficit – equal to 7 percent of operating costs – in the next state budget without raising taxes.

There are sufficient resources to raise the level of services for developmentally disabled persons cared for in private group homes – and to provide residential care for thousands more living with aging parents – by closing most state institutions within the next five years, advocates argued.

Six years before the U.S. Supreme Court ruled in 1999 that federal law entitles individuals with mental disabilities to live in community settings, Connecticut already had closed a major institution for the disabled in Mansfield.

Southbury Training School, which hasn’t enrolled new clients since 1986 and has closed 37 of the 56 buildings it once used, now serves 318 clients.

The Department of Developmental Services’ five regional centers serve another 191.

But the advocates who held a press conference Wednesday at the Legislative Office Building said these facilities eat up huge state resources, leaving far too little for thousands of others who receive insufficient, or no, residential care.

For example, Connecticut spends $442,265 per person each year for care at the regional centers and $356,350 per person at Southbury.

For the nearly 3,000 disabled clients cared for in privately run group homes, the state’s cost is about $129,114.

But advocates said Connecticut’s private, nonprofit network of social service agencies have faced decades of underfunding.

And despite $4 million in this year’s state budget to mitigate a waiting list that goes back over two decades, Connecticut still has more than 2,000 developmentally disabled persons awaiting any type of residential placement.

“It is not a just system,” said Shelagh McClure, chairwoman of the Connecticut Council on Developmental Disabilities. “Connecticut chooses to operate these costly settings and starve the private sector.”

As further evidence, advocates cited a report issued last month by Tony Records, a remedial expert appointed by a federal judge four years ago to monitor practices at Southbury.

“There are a number of compelling reasons for the state of Connecticut to now consider a carefully planned process for the closure of Southbury Training School,” Records wrote in his recommendation to state officials, adding that Southbury staff have determined 294 of the 319 persons living there, or 93 percent, “can be supported in a community setting.”

But Martha Dwyer of New York City, whose brother, Tom, is autistic, suffers from Parkinson’s Disease and has lost sight in one eye, said it is not that simple.

“The level of care he receives at Southbury is excellent,” said Dwyer, who serves on an association composed of more than 200 relatives of Southbury residents. “For some people, institutional settings are needed and must be made available.”

The average age of Southbury’s residents is 65.

The Department of Developmental Services issued a written statement Wednesday, explaining that the agency “fully embraces community services but also recognizes the serious policy considerations and complexities involved in closing settings where people have lived for many years. DDS looks forward to working with all stakeholders to develop a plan for the future that carefully balances the needs of all citizens with intellectual disability.”

Simoes and McClure said some state officials also are leery of closing institutions for fear of upsetting the state’s largest health care union, SEIU 1199 New England, which represents more than 1,500 employees at state institutions.

“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,” union spokeswoman Jennifer Schneider said.  “We encourage increasing, not narrowing, the scope of services that need to be available to those with disabilities and their families.  Meanwhile, workers who are providing such important care to our disabled community need to be treated with dignity and respect by earning a decent wage . . . Focusing on closing a facility that is already set for closure is not helpful to those families seeking residential placement for loved ones.”

Schneider also noted that the union worked with advocates last year to help secure additional state funding to mitigate the waiting list for residential placement.

But while Sen. Beth Bye, D-West Hartford, co-chairwoman of the Appropriations Committee, said she recognizes Connecticut provides insufficient funds to support the majority of its developmentally disabled population, the only chance for a lasting solution has to include all groups.

“We have sort of a rare opportunity if we are willing to dig in and work hard to do right by people with disabilities and do right by the budget,” she said.