Newspaper article The Record (Bergen County, NJ)

Families of Disabled Distressed over Closings

Newspaper article The Record (Bergen County, NJ)

Families of Disabled Distressed over Closings

Article excerpt

Mary Ellen Scesa has spent 42 of her 46 years living at the North Jersey Developmental Center in Totowa.

If it were up to her parents, the center would continue to be her home indefinitely.

"The care she gets there is phenomenal," said Louis Scesa, her father. And its proximity to their New Milford home -- just a 25- minute drive -- allows them to visit Mary Ellen regularly.

But that won't be an option for the Scesas much longer. The state plans to close the Totowa facility and a second center in Woodbridge within five years and officials are telling family members that displaced residents will likely be moved to South Jersey if they choose to remain in a state center.

The Scesas and other families find themselves caught up in a major restructuring of the state's system of care for developmentally disabled adults -- individuals with conditions ranging from intellectual disabilities to autism to cerebral palsy. When the reorganization is completed, institutional care will have disappeared from the heavily populated northeastern part of the state, a victim of fiscal realities, changes in public policy and regional New Jersey politics.

Five developmental centers will remain, including two within 50 miles of Totowa. But officials with the Division of Developmental Disabilities say few beds are available in either. The three other surviving centers are in South Jersey.

For the families of the residents of the Totowa center -- many of whom are aging parents well into their 70s -- that would turn visits into exhausting, two- and three-hour treks.

"More than likely it would require an overnight stay," said Kathy Scesa. She's 72, her husband 75.

"I used to like to drive a lot, but I don't like it now," added Louis Scesa. "We have another daughter who will become Mary Ellen's guardian when we're gone. She lives in the Suffern area, which is even farther away."

Division officials say the families can keep their relatives close to home by having them transfer into publicly funded privately run community programs either already established or planned in towns across North Jersey.

In fact, it's the search for money to fund a desperately needed expansion of the community system that is driving the state's decision to close some developmental centers -- so the cash saved can be used to pay for group homes, day programs and other services.

Patricia Howell, assistant director of the Division of Developmental Disabilities, said that thousands of disabled individuals with conditions much like those of the people living at the Totowa center are already being well cared for in the community.

"The people in the developmental centers do not have unique needs," Howell said. "We serve people in the community with similar needs. It's really a matter of the families being educated to see that is so."

But the decision to close the Totowa center doesn't sit well with many families like the Scesas, who are already worried about how well the residents will adjust to life in any other setting. They expressed a high level of satisfaction with the care provided at North Jersey and fear their loved ones won't function well in community programs.

Several said they've had bad experiences with group homes in the past and worry about the fact that workers in non-profit community programs are typically paid far less than staffers at the state centers.

In fact, families from the North Jersey and Woodbridge centers have organized a group called Save Residents' Homes at Developmental Centers.

They've met with Thomas York, a Pennsylvania-based attorney who filed a lawsuit on behalf of residents of the Vineland Developmental Center in Cumberland County.

The Christie administration had slated Vineland for closure beginning two years ago. But that was before Jersey politics took a hand. Vineland sits in the district of state Sen. Jeff Van Drew, who along with other prominent South Jersey Democrats has helped Governor Christie enact several key legislative initiatives. …

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