The families of people with intellectual disabilities weren’t able to stop the state from closing two developmental centers in 2014, but they may soon be able to find out how those shutdowns affected their loved ones.
The Legislature has passed a bill supported by these families that would require the state government to study how former developmental center residents who moved into community-based group homes are doing, including checking in with them five years after their moves.
In some instances the findings could be tragic.
Some families have circulated a list of 27 names of former Woodbridge Development Center residents who they say have died since living with family.
Joanne St. Amand, whose 60-year-old sister Rosemary moved from Woodbridge, where she lived for decades, to another developmental center said the list is likely incomplete. She estimated that the death rate is at least 35 percent higher than is typical for this population.
“The tragedy of these moves, the seriousness of these moves are not looked at closely enough,” St. Amand said.
Advocates have noted that the moves to community placements were higher for residents who had state officials serve as guardians, as compared with those who had family members.
The bill (A-1098/S-671) could prove to be the final chapter in a process that closed the Woodbridge Developmental Center and the North Jersey Developmental Center in Totowa, which formerly housed a total of more than 750 residents.
Some families fought the closures, saying that they were done for political reasons and left the state’s heavily populated northeastern region without a center that’s accessible to many parents.
Bill sponsor Sen. Loretta Weinberg (D-Bergen) wants to study the affects of the move from the developmental centers to group homes.
“I think that the families certainly deserve, and the taxpayers deserve, an examination of how successful it was,” Weinberg said. “Did people get better service? Was it more economical?”
The developmental centers are large campuses where hundreds of residents with intellectual disabilities live in smaller buildings, referred to as cottages. Supporters say that they’re able to offer full-time medical staffs and a wide variety of activities, as well as workers who stay and get to know residents due in part to good pay and benefits. They also cite the protections afforded by a federal law that governs these facilities.
But the state has moved away from these facilities. Adults newly eligible for full-time residential care are now placed in group homes.
State officials have said that residents benefit from living in local communities, where they are closer to their families and can visit community-based activities, citing a 1999 U.S. Supreme Court case, Olmstead v. United States, which says that disabled people should live in the least restrictive, appropriate setting.
State government across the country have adopted similar strategies.
The change also has received the support of most large organizations that provide services for and advocate for these residents. They’ve also noted that the state is able to maximize the number of residents who benefit from federal Medicaid funding by shifting toward community-based services.
But opponents of the closures argue that state governments and advocacy organizations have focused on the benefits of community placements to residents with lower levels of disability. They say that those with more severe disabilities, such as needing assistance with being fed, benefit from the comprehensive services and more stable staff at developmental centers, compared with group homes, where the turnover rate is higher.
State officials have countered by pointing to examples of residents with high levels of need who have done well in group homes.
St. Armand disagrees.
She noted a study of California residents published in 2005 in the “Journal of Data Science” that found elevated mortality rates for those who moved out of institutions in the late 1990s.
“I think it would clearly show that these closures have had a significant impact on the health of these individuals,” St. Amand said of a study.
Geoffrey Dubrowsky, a Brick resident, is the guardian of his 31-year-old niece Heather Sims, who has severe autism and who lives in a developmental center, and his 29-year-old nephew Benjamin Sims, who has a condition called fragile X syndrome that causes a variety of disabilities and who moved from a developmental center into a group home.
Dubrowsky said it’s unfortunate that it’s taking the deaths of residents to build support for a study.
He said it’s important for the study to cover a five-year period, since some residents’ conditions worsen over time. He would like to see the state allow more residents to move to the centers, so that they remain a viable option in the future for residents who could benefit from more extensive services.
Weinberg would like to see the state take a flexible approach.
“You can’t do one size fits all for this population,” Weinberg said. “You can’t pass a rule that says they can all be served better in community settings. Are there those who can be and should be? Absolutely.”
It’s not clear how much the study would cost. The nonpartisan Office of Legislative Services said there wasn’t enough information to do a cost estimate, but that it would likely be more expensive than earlier studies that followed the closures of the Johnston and North Princeton Developmental Centers, since it would cover more residents over a longer period of time.
OLS also officials noted that the earlier studies only included a sample of residents, while the bill requires that all residents be included, which would “likely be very costly and difficult to execute, as some study subjects may not choose to cooperate with investigators.”
The Assembly passed the bill 75-0 in March 2014, while the Senate passed it 36-0 last week. Assembly sponsors include Assemblywoman Valerie Vainieri Huttle (D-Bergen), who said in a statement that “it is now our duty to make sure that their former residents have the care and opportunities they need and deserve.” The first primary Senate sponsor is Sen. Nellie Pou (D-Bergen and Passaic).
The bill also covers residents of state psychiatric hospitals and veterans memorial homes that close, but none of these have closed since August 2012, the period covered by the bill.