NYT: For Special-Care Residents, New York State Policy Means Leaving Home

Long after lunchtime one recent afternoon, John Cosentino sat at his usual table, eating his usual snacks. On this day, he was the only resident of the Brooklyn Developmental Center in its cavernous cafeteria, drafty and lit with the bleakness of an earlier era.

His father, Tony Cosentino, arranged fruit salad, nuts and pretzels on a paper plate, which John grabbed. Mary Ann Cosentino spoon-fed her son yogurt.

“Very good, John!” she said.

She tensed when John started waving his left hand near his forehead, past the ear he long ago mutilated and the blue eye blinded in a fall at the center. This was his sign that he might hit himself. Instead, he gestured for his white mitts from his L.L. Bean canvas bag monogrammed “J C,” and put them on. Then he suddenly stood up and pushed back his chair. Visit over.

For John Cosentino, 50, an intellectually disabled adult with profound autism and self-injurious behavior who does not speak, this routine has been his refuge. He has lived at the sprawling, state-run center in East New York off the Belt Parkway since he was a teenager. Sometime this year, however, his routine will abruptly end, and he, like the other remaining residents of the institution, will probably enter a group home.

The Brooklyn Developmental Center, which opened in 1973, will be closing by Dec. 31. It is part of the state’s long-planned process of deinstitutionalization, which follows a national trend since the 1980s that has been lauded by advocates and officials, who say that less-restrictive care and community living are more humane for people with intellectual and developmental disabilities.

The new model is also substantially less expensive. In New York, in 2012, services at public institutions cost more than three times as much per person as services provided to adults living in group homes or settings anywhere outside a private home, according to data submitted by the state to the University of Minnesota’s Institute on Community Integration, a federally funded research center. The system at one point was revealed to have vastly overbilled Medicaid.

Once, New York State had 22 institutions serving more than 27,000 people. By 2017, when the Bernard Fineson Developmental Center in Queens closes, only two institutions — both far from New York City — will remain open, serving a total of 150 people. The Brooklyn center, which housed 614 residents in 1984, is down to 58 spread across five buildings on a 35-acre campus.

For some families of the highest-need residents left there, the policy has caused anger and anxiety. “Why is the governor closing the place of last resort for Brooklyn residents?” Mr. Cosentino, 73, said, his voice rising in panic.

For nearly a year, Mr. Cosentino, a former Army captain, has waged a one-man campaign to keep the center open, starting a petition on Change.org to save the facility — which he once sued successfully for negligence, and which has had compliance issues with the State Health Department. Mr. Cosentino does not trust that the alternative will be safer.

“We’ve lived this for 36 years here,” Mr. Cosentino said one recent Sunday after a visit with his son. “This is not a perfect place. What this place gives us, it gives us staffing, it gives us nursing, 24/7. Here, we know what we’re dealing with.”

The state’s Office for People With Developmental Disabilities, which is handling the transition, operates more than 1,000 group homes. The agency will oversee private agencies that manage the care and says it is working with families to find these residents proper placement.

“Individuals who continue to need more intensive treatment will receive necessary services in the setting most appropriate for them, with the goal of fully integrated community supports when it is clinically appropriate,” the agency said in a statement.

When John arrived at the Brooklyn Developmental Center, he was considered “mentally retarded.” In the decades since, the model of care for the disabled has shifted drastically. Children with even profound intellectual and developmental disabilities are more often being cared for at home, or in younger adulthood are moved into small group homes that advocates say offer a more stimulating way of life.

Here, and nationwide, the legal impetus for the closings is a 1999 United States Supreme Court case, known as the Olmstead decision, which made it unlawful to restrict people in institutions and required that states provide opportunities for community living. Now, 12 states and the District of Columbia have completely eliminated large state-operated institutions.

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