With the state-run residential centers for the disabled slated to close in northern New Jersey, hundreds of families are searching for new homes for their loved ones.
The decision is tearing at many families who worry about how they will maintain contact if a loved one is moved to an institution hundreds of miles away — a trek especially daunting for aging parents. Others, however, have discovered they are pleased with local group homes, which they never thought would have sufficed in the face of extreme disabilities.
Kesha Smith, who has lived at the North Jersey Developmental Center in Totowa for 28 years, will move next month to a center in Burlington County, nearly two hours from the family’s Paterson home. “We had no say,” said Deborah Smith, Kesha’s mother. It will make it more difficult for the family to visit or bring her home on weekends, she said.
“If we want Kesha close to home, we would have to opt for a group home,” she said. “She is profoundly disabled and can’t survive in a group home.”
The pending closures — July 1 at Totowa and Jan. 1 at the state’s center in Woodbridge — will mean that institutional care will disappear from the heavily populated northeastern part of the state, a victim of budget constraints, changes in public policy and regional New Jersey politics.
Five developmental centers will remain open, but the two closest to North Jersey, in Somerset and Hunterdon counties, are at capacity, said Pam Ronan, a spokeswoman for the state Department of Human Services. The only beds available at other residential facilities are in South Jersey — in Burlington, Cape May and Cumberland counties — turning visits into two- and three-hour trips.
The families find themselves caught up in a major restructuring of the state’s system of care for developmentally disabled adults — individuals with such conditions as intellectual disabilities, autism and cerebral palsy. The decision to close two of the state’s developmental centers reflects a long-standing shift in national experts’ opinions about the best way to care for the developmentally disabled. The move is toward community care, like group homes and day programs, rather than state-run institutions.
The closures will save the state $27 million for the next fiscal year, money that will be redirected to community housing, where there are long waits for beds, as well as day programs and other services, officials said.
Governor Christie has defended the closings, saying he won’t allow “a vocal minority to stop progress.”
New Jersey has one of the nation’s highest rates of institutional care for the disabled and it’s time to catch up with more modern approaches in treatment in less restrictive environments, the governor has said. Only Arkansas and Mississippi have a larger percentage of disabled people living in institutions.
With a $1.6 billion budget, the state Division of Developmental Disabilities provides services to more than 40,000 disabled individuals, of whom 2,340 have lived in the seven developmental centers. An additional 8,000, most living with their families, are on a state waiting list for community services, such as group homes and day programs.
“We really lag behind the country in how we have used our resources and how we have supported people to live quality lives,” said Deborah M. Spitalnik, executive director of the Boggs Center on Developmental Disabilities, a research project at the Rutgers Robert Wood Johnson Medical School in New Brunswick.
Many states, including Pennsylvania and New York, have for years cared for people in the community with the same level of disability as residents in New Jersey’s developmental centers. “It absolutely can be done — it does require skill and dedicated resources,” Spitalnik said.
In response to questions about the concerns of some families, state officials point to cases in which residents have been moved successfully, even when families believed their loved ones couldn’t thrive outside an institution.
Frances Finkelstein was anxious about relocating her son, Eugene, from the Totowa center, where he had lived for six years. In his mid-50s, he is mentally retarded and mentally ill and also has autism, his mother said.
The Clifton family opted for a group home in West Milford run by AdvoServe, behavioral health experts that also operate programs in Florida, Connecticut and Delaware. Eugene has lived there since September with nine other disabled residents.
“He has a very skilled and caring staff,” Finkelstein said. “They specialize in challenging clients. I couldn’t be happier.”
But Deborah Smith is not convinced such a setting will be right for her daughter.
Kesha Smith, 43, can walk and feed herself, but her speech is limited. She is also epileptic and has “aggressive” behavioral issues that require 24-hour monitoring, her mother said.
When she was 13, Kesha tried living in group homes, but was transferred three times in one year because her behavior was unmanageable, her mother said.
Deborah brings her home for visits every other weekend and on holidays and fears those outings will be difficult if her daughter moves far away.
“It’s just so devastating,” Smith said. “We take her to see her grandmothers. It will reduce the time she visits us if she’s 100 miles away.”
Louis Scesa and his wife, Kathy, have made the 60-mile drive from their New Milford home to the Hunterdon Developmental Center several times since their daughter, Mary Ellen, was relocated from Totowa in January.
“It takes us three times as long to get to her but it was the best of all options,” Louis Scesa said. Unable to walk or talk, Mary Ellen functions as an 18-month-old. For now they handle the trip but Louis, 76, said, “It’s not going to get any easier on us.”
So far, nearly half the residents at the Totowa facility have been moved out since the closings were announced — 74 to group homes and other community facilities and 93 to other developmental centers as of Jan. 31, Ronan said. That leaves 186 awaiting transfers.
The push is for community living; much of the Division of Developmental Disabilities’ work is geared toward new development, such as buying homes and renovating them for the disabled. If family members and treatment professionals opt for community living, they are assigned a case manager, who connects with provider agencies, qualified by the state, to determine the best match, Ronan said. Families can then meet with the agency and tour the site. A transition plan is put in place 30 to 60 days before the person is ready to move in.
Some families said they felt pressure — if a group home doesn’t work out, a loved one cannot return to a developmental center.
But Ronan said the state “very closely monitors” how each person adjusts.
“In the rare case that it is not successful, another community setting is arranged,” Ronan said.
Smith and other family members say it’s politics, and not the best public policy, that is driving the change.
Two years ago, the administration proposed closing the Vineland Developmental Center in Cumberland County, but a legislator said the move would have a devastating impact on the region’s depressed economy. Christie appointed a task force, which targeted the facilities in northern New Jersey because it would have less impact on the local economy.
“They close the only two centers in the northern part of the state where most of the developmentally disabled live and then tell us if you want to stay in a center, go along with our plan,” said Sam Friedman, the guardian of his 47-year-old sister, Jackie. She had spent virtually her whole life at the Totowa facility until she was transferred to the center in Somerset County after the closings were announced.
“It’s incredibly coercive,” said Friedman, of Englewood.
Assemblywoman Valerie Vainieri Huttle, D-Englewood, is still receiving pleas from constituents to block the closures: One elderly Bergen County woman learned that her daughter is heading to a developmental center in Cape May County, her only option if she wants her to remain in a specialized facility.
“I’m trying to offer assistance to these families but I don’t know at this point if we can turn anything around,” said Huttle, chairwoman of the Assembly Human Services Committee.
Huttle’s bill to split the state into four regions and request at least one developmental center in each region was approved by the Assembly last year but didn’t advance. Huttle had introduced another bill that will require the state to track the location and well-being of people who are transferred from the developmental centers. That measure was recently approved by the Assembly.
Some families hold out a bit of hope that a legal challenge may halt the transfers. Last June, families and guardians of nearly three dozen disabled residents filed suit in federal court claiming the state violated their rights by moving to shut down the northern New Jersey centers. The suit was dismissed, but an appeal was filed March 18.
“We’re speaking for the people who can’t speak for themselves,” Friedman said. “When it was done this way, we really have no choices.”