Woodbridge Developmental Center A dvocates for residents of New Jersey’s developmental centers realized their worst fears when two men died after being transferred to group homes from the state’s soon-to-be-shuttered facility in Totowa.
“That’s only the two we know about,” said Joanne St. Amand, president of the parents’ association for the Woodbridge Developmental Center (WDC), which is also slated to be closed. “How many medication mistakes [have there been]? How many people had problems adjusting and ended up in psychiatric hospitals?”
The fatalities have state lawmakers pushing to pass legislation that would provide greater protection for the residents, who have intensive needs related to their developmental disabilities.
The Assembly voted June 23 to approve a bill sponsored by Assemblywoman Valerie Vainieri Huttle (D-Bergen) that would place a moratorium on moving residents from the developmental centers in Woodbridge and Totowa until the deaths are fully investigated.
Another bill recently passed by the Assembly would conduct studies into the transfer of residents from developmental centers to group homes in the community.
State Sen. Peter Barnes (D-Middlesex) is sponsoring the companion bill in the Senate.
“I’m hoping we can simultaneously move it out together,” Huttle said. “Time is of the essence, and I think it’s an urgent matter that needs addressing.” Barnes has introduced a second bill that would require developmental center residents to receive a comparable level of care once moved to a new facility, and for the individuals to be moved to a facility within 30 miles of the developmental center at which they resided. Huttle is sponsoring its companion bill in the Assembly.
“This is what Gov. [Chris] Christie has promised; this is what [Department of Human Services] Commissioner Jennifer Velez has promised,” Barnes said. “We want this to be statutorily mandated.”
Barnes said the legislation was spurred by the two deaths.
Richard Fornarotto, 54, and Steven Cortes, 65, died in February and May, respectively, both as a result of choking.
For Fornarotto, a group outing to ShopRite turned fatal when he grabbed a cupcake off a shelf and attempted to eat it, according to St. Amand.
Cortes met a similar fate when he got into a back room at the Livingston group home where he lived and choked on a sandwich he found there, she said.
“This was just a matter of not keeping an eye on these individuals,” St. Amand said. “One of the major causes of death for these people is choking and asphyxiation.”
St. Amand’s 59-year-old sister Rosemary was recently moved out of the WDC. Like many other residents, Rosemary requires food to be pureed for consumption. Some residents also need help swallowing pureed food, St. Amand said. Pam Ronan, a spokeswoman for the Department of Human Services (DHS), would not comment specifically on the deaths, but said any serious incidents within residential programs funded by the state are investigated by the DHS and, when appropriate, by law enforcement.
“There is not a causal relationship between a choking event and the location in which a person lives; choking is one of the leading causes of death for people with developmental disabilities, regardless of where they live,” Ronan said.
A statement from Save Residents’ Homes at Developmental Centers, an advocacy group, asserted that the state’s policy on moving residents from the two centers cuts the residents off from previous caregivers who know their needs from years of working with them.
“The follow-up is only from a ‘transition management team,’ who have no prior knowledge or experience with the resident,” group representatives wrote. “There is not even allowed to be communication with the doctors who have treated them. No one who cared for the resident in the past is allowed to follow up. This is tragic, because these are residents who cannot articulate their own needs, and rely completely on staff who surround them and understand their needs.”
According to St. Amand, being moved has taken such an emotional toll on some residents that a few now require feeding tubes. Others developed pneumonia, and some who were seizure-free before moving began having seizures after their transfer, she said.
“It’s terrorism, simple and plain, that the state is inflicting on these families,” she said.
Ronan cited a 2003 study by Paul Lerman, now DHS Deputy Commissioner Dawn Apgar and Tameeka Jordan, which concluded that the relocation of individuals from a New Jersey institution did not have an impact on their mortality rates.
However, St. Amand said a 2001 study by the same authors identified four characteristics that were predictors of death in those moved from a developmental center: being age 60 or older; having a seizure or epilepsy disorder; having low self-care capability; and having at least one medical condition.
She said one or more of these criteria apply to the vast majority of developmental center residents.
Further, caregivers at group homes and other community care facilities aren’t held to the same federal care standards set forth by the Centers for Medicare and Medicaid Services (CMS), advocates said.
“Developmental centers must meet the federal care standards of Intermediate Care Facilities/Mental Retardation (ICF/MR), which require specific training of staff members and specific reporting requirements, among other things,” Save Residents’ Homes at Developmental Centers wrote. “The same level of training and reporting is not required in community settings.”
St. Amand said the standards are more stringent under the federal regulations, and that the required community care waiver for those leaving developmental centers makes it clear that residents must waive their ability to receive certain care and services once placed in community care.
“They’re fundamentally different,” she said, adding that while community caregivers have sufficient skills to care for most of those with developmental disabilities, they are not equipped to meet the needs of developmental center residents.
Ronan refuted this, saying staff of community care centers receive the same training, based on CMS guidelines.
Christie has said in the past that residents of the developmental centers should be moved into the community. The 1999 Olmstead Act mandated a move away from institutionalization for persons with mental illness, instead aiming to integrate such persons into the community.
But families of the developmental center residents insist that this simply does not apply to their loved ones.
“The Olmstead decision was meant to be a shield, not a sword,” St. Amand said. “These are forced evictions here.”
A spokesman for Christie did not respond to a request for comment.