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Out of Tragedy, Call for New Protections for Intellectually Disabled

Two unexplained deaths, push to return residents from out-of-state centers, disturb families and advocates

dawn apgar
Department of Human Services Deputy Commissioner Dawn Apgar.

Alarmed by reports of two deaths after the state transferred patients out of developmental centers into group homes, legislators are calling for a moratorium on any more transfers pending further investigations.

They also want to stop the state from forcing the return of developmentally disabled residents who have been living in out-of-state facilities.

Both ends would be achieved by A-1110/S2198, which is currently being reviewed by an Assembly committee.

The bill would call a halt to transfers until the state determines if residents being moved from centers are safe and getting appropriate care. It also requires state officials to investigate any deaths or serious injuries that are caused by patients being transferred from developmental centers.

The measure has another purpose: to protect developmentally disabled New Jersey residents who are being treated out of state from being transferred to in-state facilities -- where they can be treated more economically (thanks, in part, to federal matching funds).

“The increased ability to receive federal match funding is obviously the key motive," said Livingston resident Diane Goldman," and I argue it’s being pursued at the cost of the welfare of the very individuals (the Division of Developmental Disabilities) is supposed to be assisting."

Goldman said her brother David Zimmerman has lived at Pathfinder Village, a facility for residents with Down syndrome in Edmeston, NY, for more than 53 years. He is one of six New Jersey residents at the facility.

Unexplained Deaths

Advocates of the intellectually disabled say the two men who died, Richard Fornarotto and Steven Cortes, choked on food.

But few details are available. State officials declined to discuss the cases, citing privacy laws, but said there is no “causal connection” between the residents’ deaths and their transfer from developmental centers.

Bill sponsor Assemblywoman Valerie Vainieri Huttle (D-Bergen) said there was a sense of urgency “over the two confirmed deaths.”

Developmental centers are large facilities that provide a comprehensive set of residential and medical services to residents with intellectual disabilities. The state is closing the Woodbridge and North Jersey developmental centers -- the only two in the heavily populated northeastern part of the state -- and transferring some residents to other centers and to group homes.

Advocates argue that the services available at the centers are more comprehensive than those available in group homes, emphasizing that center staff members are more experienced and develop long-term relationships with residents.

But state officials and group home supporters say that the state provides equal services in the two- to- four-resident homes and that residents and communities both benefit from the presence of these homes.

Brick resident Geoffrey Dubrowsky, whose 31-year-old niece has lived at the Hunterdon Developmental Center for 18 years, said advocates, himself included, didn’t fight hard enough to make sure the Legislature and Gov. Chris Christie understood the need to keep developmental centers open. For this reason, he said he apologized for the deaths.

But Dan Keating, executive director of the Alliance for the Betterment of Citizens with Disabilities, said “unfortunate incidents” have occurred in both developmental centers and group homes, and that it’s “not accurate” to suggest that they wouldn’t occur in one setting or the other.

Keating added that a moratorium would only delay “the availability of precious resources needed to serve all New Jersey residents with intellectual and developmental disabilities, not just some.”

He cited state statistics that more than 90 percent of residents with disabilities live outside of developmental centers, but they only receive 66 percent of state funding.

“Many are going without”, Keating said. He argued that the closure of the centers would allow many more residents to access services.

The Arc of New Jersey governmental affairs director Sharon Levine said it would be wrong to have a moratorium, since it would prevent some developmental center residents who want to live in group homes from moving.

And New Jersey Council on Developmental Disabilities public policy director Robert Titus said there “isn’t enough information that safety and competence have been lacking,” in transferring residents from the developmental centers to have a moratorium.

Points of Law

Dubrowsky, Keating, and others spoke yesterday at an Assembly Human Services Committee hearing before the committee voted to release the bill.

In addition to imposing a moratorium on the further transfer of residents from developmental centers, the bill would require the state Department of Human Services to investigate the deaths and any other serious injuries, as well as conducting a comprehensive evaluation of residents affected by the closures.

The evaluation would examine whether residents who have been transferred are receiving safe and appropriate care, as well as whether residents who are still in the centers that are closing are receiving safe and appropriate care. The report would be required to be issued within six months of the bill being enacted.

The bill would also bar the state from transferring residents with disabilities who live out of state back into the state if the transfer is opposed by the resident or his or her guardian; the residents has lived out of state for 10 or more years; or a medical evaluation of the resident indicates that the transfer would be harmful to his or her health or safety.

In many ways, the issue of moving residents who are being treated out of state back to New Jersey mirrors the problems associated with transferring clients at developmental centers to group homes. The residents have typically spent years at a facility and have grown emotionally attached to their caregivers, who also have the skills and training to make sure patients receive any special treatment they need.

“To me, it’s just absurd that it could even be considered,” Goldman said of transferring her brother out of his lifelong home. She added that he has been suffering dementia and needs continual reminders to chew his food.

His caregivers “know his habits, they know his preferences, they know his warning signs,” she said, adding that new caregivers would need time to recognize if he was choking. “I’d suggest that by the time they did, it would be too late.”

The Out-Of-State Conundrum

But how did New Jersey residents end up being treated in out-of-state facilities and why the push to bring them back at all?

As of 2009, New Jersey was paying for nearly 700 residents with intellectual disabilities who were living out of state. They were placed there because in-state providers couldn't meet their needs, at least at some point in the past.

Some of the placements were done when these residents were still in school, but New Jersey started to pick up the tab when they became adults.

State officials, however, said that there is now a wider range of services available than in the past. They also indicate that New Jersey is paying more for most residents with disabilities who are living out-of-state than it would be if they moved back.

The primary reason for this financial imbalance is that New Jersey has to pay the entire cost of care for most of these residents, under the terms of a Medicaid waiver. The federal government will pay for half of the cost of care for residents who live in New Jersey, but typically won’t pay these costs for most residents who live outside of the state.

State officials said that’s because most of these residents live in larger facilities and centers, while the waiver is focused on providing services through group homes. In fact, there is a dollar-for-dollar federal match for group-home placements.

In addition, state officials said they are better able to control other costs for in-state residents, such as hospital stays and emergency treatment. That’s because the state Medicaid managed-care organizations have contracts with hospitals inside the state, but not with medical facilities in other states.

Expert Testimony

Department of Human Services Deputy Commissioner Dawn Apgar acknowledged that the transfers can be challenging for families, but said both the lack of federal matching funds and the inability to adequately monitor out-of-state placements were factors in returning residents to New Jersey.

She also noted that the state settled a lawsuit with the nonprofit advocacy organization Disability Rights New Jersey that requires the state to increase group-home placements. In addition, the range of services available inside the state has increased sharply from previous decades.

She said the state spends an average of $115,000 per year for each of the 464 residents currently living in 13 other states.

Apgar said the state has returned 146 residents since 2009, frequently taking years to ensure that each resident will have a safe and appropriate placement with one of 280 group-home providers. She added that disability-rights advocates had questioned the quality of care in some of the out-of-state facilities.

Apgar indicated that families have two options to keep residents in out-of-state facilities: pay for it themselves, or establish residency in the other state so their family members can benefit from that state’s services.

Apgar also updated the committee on the status of the two developmental center closures -- all residents have left the North Jersey Developmental Center in Totowa, with about half of the residents moving to other centers, while the transfers from Woodbridge Developmental Center were ongoing, with most residents moving to other centers.

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