The long-running struggle over whether New Jersey’s government will force adults with disabilities who live outside of the state to return to New Jersey is set to come to an end.
A bill (A-4781/S-3117) advancing in the Legislature would make permanent the terms of an agreement reached by lawmakers and Gov. Chris Christie during the summer. The deal prevents state officials from requiring that adults with intellectual disabilities who live in other states transfer to group homes in New Jersey.
The bill is receiving a warm response from some of these residents’ families, who say that the New Jersey group homes were ill prepared to serve their loved ones. The bill also allows those who’ve been required to live in New Jersey to move back to their out-of-state placements if their guardians request it. As of March, 170 people had transferred back to New Jersey, while 382 remained outside of the state, mostly in residential institutions.
The people with disabilities were placed outside of New Jersey, in some cases several decades ago, by the state government. Under a program named Return Home New Jersey, the state attempted to find group-home placements for all of them. Some families objected that group homes are unable to match the services provided at out-of-state residential facilities.
After Gov. Chris Christie vetoed a bill last year that would have put a moratorium on transfers back into the state, family members and legislators appealed to the governor. In July, lawmakers and the administration announced an end to the forced transfers, but bill sponsors say that the legislation is needed to make the terms of that agreement permanent.
Sponsor Assemblywoman Valerie Vainieri Huttle (D-Bergen) said it is “our responsibility to make sure that this becomes law and that the families placed out of state do not have to return.”
Huttle, who said she felt part of the “family” that supported the bill, credited the persistence of the residents’ parents and other family members for making a resolution possible.
Rita O’Grady noted that her son Tyler Loftus had become the “default poster child” for the end of forced transfers. This occurred after he was jailed for 19 days following his being evicted from a group home after he became violent. Tyler has autism and has been diagnosed with mental illness.
“This bill has so much meaning for us,” O’Grady said, adding that her son will be returning to Woods Services, a residential facility in Langhorne, PA.
[related]O’Grady said that undertrained group-home staff members have been overwhelmed by residents with behavioral issues. She added that Loftus was hospitalized last month after he had a heart rate of 40 due to an adverse reaction to medication provided to him in his current group home.
“They’re not trained to manage the behavior; they keep taking them back to the psychiatrist and saying, ‘We need more medication,’ ” O’Grady said, adding that group-home staff members need more training in how to manage behavioral episodes.
The bill “is so important, because this is going to end our three-year nightmare in the group-home system,” she said. “While not everyone in the group-home system is unhappy, the medically fragile and the behaviorally fragile are falling through the cracks terribly.”
Vainieri Huttle attempted to deflect testimony at a recent legislative hearing away from criticism of the group homes, emphasizing that the many people flourish in these homes.
But parents called for further legislative scrutiny of the group-home system.
Laura Kelly said her 27-year-old daughter Alexa — who has autism, Down syndrome, and a seizure condition — has not received appropriate care since being returned to New Jersey.
She cited an incident in which the group-home staff members accompanied Alexa on a trip without bringing seizure medication or a portable oxygen tank.
“When I inquired about it, they informed me no one had told them” to bring the supplies, Kelly said. “So, in other words, staff had not been trained in Alexa’s seizure protocol, even after nine months of pre-placement meetings.”
Laura Kelly recalled another incident in which staff members called her because Alexa had awoken, only to find that Alexa had vomited in bed and had a 104-degree fever and severe lung infection.
“It’s such a broken system and things are going on all the time and it just all seems to fall on deaf ears,” Kelly said.
State officials have defended Return Home New Jersey, saying that they can better monitor individuals with disabilities when they’re inside the state; that they deserve to live in homes that are integrated into communities; and that the state can receive more federal funds that can serve more residents if they’re returned.
State officials said in May — before the agreement — that New Jersey is spending $48.3 million on the 382 residents living out of state, and would likely spend a similar amount if they were returned. But the state would also become eligible for an additional $22.8 million in federal Medicaid matching funds, since the federal government furnishes additional funding for community-based placements.
Vainieri Huttle said legislators would continue to look into the issues raised by the parents after the bill is enacted.
The Assembly Human Services Committee released the bill on a 5-0 vote. The Senate passed its version in July.