Poor planning? Life after Broome Developmental Center
- The Americans with Disabilities Act set the closing in motion by mandating integration of developmentally disabled into the community
- Advocates for the developmentally disabled say it is a disservice to relegate the population to institutions
- The process by which the OPWDD been closing the massive centers has been called into question by those who are now called on to deliver care
Faced with the closing of Broome Developmental Center, the state has failed to develop a strategy to shift the future burden of care to the private sector.
The New York State Office for People With Developmental Disabilities has a general timetable for the transfer of clients. But the nonprofit organizations facing heavier caseloads say they lack a clear picture of how the state will attend to future clients coming into the system.
“Programs and supports have been discontinued before alternative options have been developed,” said Steven Kroll, the Albany-based executive director of NYSARC Inc., the nation’s largest nonprofit provider of services to people with developmental disabilities.
Among the concerns of Kroll, and others in the field, is that the developmentally disabled will be left without needed support going into the future.
LEFT TO DECAY: Will Developmental Center be abandoned?
An April records request by the Press & Sun-Bulletin under the state Freedom of Information Law to the Office for People with Developmental Disabilities for a departmental plan that provides for the continuation of care was delayed three times and then not provided.
“Surprise, surprise,” said Assemblyman Clifford Crouch, R-Bainbridge. For all the assurances the state gives, he still wonders if any plan has been well thought out even though the Office for People With Developmental Disabilities provides quarterly updates on the transition plan.
Rather than having a strategy for community-based care into the future, the agency reports it has developed an individual transition plan for each current client.
“To say that it’s frustrating doesn’t even come close,” said Walton’s Judy Breese, the mother a 25-year-old on the autism spectrum served by the Broome Developmental Center who is battling the agency over its lack of transparency.
By this time next year, the last person will have departed from the sprawling 325,000-square-foot Broome Developmental Center complex on a 47-acre site off Glenwood Road north of Route 17 in the Town of Dickinson just north of Binghamton. The 166 clients housed at the site as recently as two years ago, down to 79 at last report in April, will be scattered in group homes or their own apartments in neighborhoods throughout Broome County and elsewhere.
Broome Developmental outlasted similar centers in the Hudson Valley, Syracuse, Rochester and elsewhere across the state. And the reason it did was testament to the standard of care and relative efficiency of the center.
But according to the state’s response to the records request for a plan, closing the 40-year-old development center leaves a list of unanswered questions:
• Will former residents be able to find the same services in the community?
•Can newly diagnosed developmentally disabled persons count on the same level of service that the center previously provided?
•How will the expected shutdown of sheltered workshops and possibly day treatment programs affect the daily routines of the developmentally disabled?
Reasons for closing
The decision to abandon the developmental center system was not made by the state.
The Americans with Disabilities Act requires the developmentally disabled to be integrated into the community. A 1999 Supreme Court ruling that determined segregating developmentally disabled in institutions was discriminatory speeded up the need to close, and changes in Medicare/Medicaid reimbursement policies made it even more imminent.
“It’s all driven by money,” said Steve Sano, executive director of HCA in Johnson City. Sano, whose nonprofit serves the developmentally disabled, said the Medicare and Medicaid reduced reimbursements for care have forced the state to shift the population to less costly community settings.
Since 1987, with the closing of the highly criticized Willowbrook State School on Staten Island, the state has closed 16 institutions for the developmentally disabled, sending 27,000 individuals into the community. By the end of 2017, the state expects to house fewer than 500 people at the only two developmental centers that will remain open — Tupper Lake in Franklin County, and Norwich in Chenango County.
Developmental disabilities are usually used to classify individuals with Down syndrome, cerebral palsy, autism, epilepsy and brain damage. Each disorder has degrees of severity.
In the Binghamton region, the Office for People With Developmental Disabilities provides services to 1,486 people in 325 state and voluntary community homes.
Many advocates for the developmentally disabled say it is a disservice to relegate the population to institutions. Among parents and guardians, there appears to be less division than is commonly perceived, but there’s still a split among some about what they see as opaque plans for the future.
“My son deserves a good life, as does anyone with a developmental disability,” said Sally Colletti, whose 22-year-old autistic son lives in a Vestal group home.
Patricia Kaplan says that although she lives in Baton Rouge, Louisiana, 1,400 miles from her sister, Carolyn, she never worries about the quality of care for the 67-year-old, who has lived in a state-sponsored group home since being removed from an institution 20 years ago.
“I’m not against institutions, but we’re not in the 1950s,” Kaplan said during a telephone interview, explaining that modern treatments and newly developed pharmaceuticals allow the developmentally disabled to live outside the sterile walls of a pseudo-hospital.
Rather than provide an overall plan and timetable for the closing of the Broome Developmental Center, Jennifer O’Sullivan, spokeswoman for OPWDD, said plans are specific to the individual being placed outside the institution. Those plans are developed in consultation with the parent or guardian and the treatment team from the Office for People With Developmental Disabilities.
But according to people who will be responsible for the population, the individual plans still leave far too many unknowns about the future expectation of the private organizations and whether there will be sufficient funds to tend to the needs of those transferred from the institutional setting.
Non-profits react
Non-profit agencies provide a critical link in the state initiative to shift the developmentally disabled into the community. Eighty percent of the nearly 130,000 people statewide under the Office for People With Developmental Disabilities wing are being provided through the aegis of non-profit agencies.
The process by which OPWDD has been closing the massive centers, however, has been called into question by those who are now called on to deliver care. Those serving the developmentally disabled population wonder if the urgency to close developmental centers has trumped the formulation of a definitive strategy to attend to the needs of those in their care.
Though many service providers support the concept of embedding the developmentally disabled in the community, they are befuddled by a seemingly seat-of-pants plan for providing services.
For Mary Jo Thorn, executive director of ACHIEVE, it’s as if she is driving through a whiteout and doesn’t know when or where she will exit.
“It is bit of a chaotic environment,” said Thorn, who runs a not-for-profit agency that provides day treatment and residential services to the developmentally disabled.
Threatened are the enterprises that employ the developmentally disabled. Those serving the population say the state has mandated no new placements into the program, a service that provides a routine and a purpose for some.
“We have kids graduating with disabilities with no place to go, and that’s unconscionable,” Breese said.
Efforts to assure that the same services available in the institutional setting remain when residents are placed in the community are in limbo. Legislation passed this year by the New York Senate and Assembly that provides for the continuity of care remains unsigned on Gov. Andrew Cuomo’s desk.
The state fully expects the developmentally disabled to find gainful employment outside the segregated, sheltered workshop settings or to get volunteer roles in the community.
To Breese, that’s just unrealistic. Many of the developmentally disabled will be unable to compete for traditional positions, and those in rural areas will be at a distinct disadvantage because they will be no transportation to their expected new roles, especially in rural settings. By some estimates, 93 percent of the developmentally disabled are unemployed.
“We will now have young adults sitting at home watching TV, and that, in my view, is a crime,” Breese said.
Those who run the programs echo Breese’s concern.
“We are gravely concerned ... that change is taking place too rapidly for proper planning to take place, and this has forced providers like NYSARC’s Broome-Tioga chapter, ACHIEVE, and families into a perpetual state of uncertainty,” Kroll, of NYSARC, said in an email.
Who goes where?
Answers are few on those clients who are difficult to place.
Danby residents were more than a bit anxious when informed that two Level 3 sex offenders, relocating from Broome Developmental, would be placed in a group home in their community. Assurances by treatment specialists that the two were unlikely to repeat the offenses did little to allay fears.
“They are trying to push out people who are not appropriate for group homes,” Crouch said.
Unity House, the Auburn-based non-for-profit sponsoring the home, eventually relented and agreed to house the individuals elsewhere.
“For the few individuals who are subject to court orders that preclude them from moving into less restrictive settings, intensive treatment services in a campus setting will be available,” O’Sullivan said.
The state insists that their attention to the developmentally disabled has not ebbed with the closing of institutions. Across the state, 1,200 individuals were taken under the OPWDD wing last year, O’Sullivan said, with two-thirds moving into a residential setting or their family home.
On average, each developmentally disabled person receives about $171,500 annually in Medicaid or Medicare to fund their care, and an additional $123 a month in Social Security income, said those familiar with the reimbursement formulas. Persons with more acute medical needs receive higher Medicaid annual disbursements.
Providers say the stipend, for the most part, provides enough for care of the developmentally disabled.
That money is then used to pay for the services provided by the state or a private agency. For instance, Colletti advises parents on self-directed care for the developmentally disabled, where parents pool their disbursements and set up their own group homes outside the agency setting.
“My son has companionship. He has interactions with others,” Colletti said. “He deserves to live in a nice house.”
After advising families across the country through her Advocates for Autism organization, Colletti is thankful she lives in New York. Florida waiting periods for entry into the the system could be as long as 12 years; in North Carolina eight, she said. In New York, parents or guardians of developmentally disabled people get prompt attention from agencies.
“New York is among the most generous states in the country for people with disabilities,” she said. “There is no waiting list for Medicaid.”
Findings
•Closing the state-operated BDC was forced by federal regulations covering the disabled, but the New York Office for People with Developmental Disabilities says it has no plan for the shutdown or handling developmentally-disabled people into the future.
•Few plans have been made for the developmentally disabled now and in the future, say nonprofit leaders, who will bear the burden of providing care. One describes it as “chaotic.”
•No discussion of what to do with the 325,000-square-foot facility have taken place, meaning that next year it will join other abandoned, former government buildings in the region.