By Melissa Hayes Bergen Record
Parents of adult children with developmental disabilities celebrated a small victory on Friday after a Bergen County assemblywoman agreed to hold off on controversial amendments to a bill that they fear would do more harm than good.
The state Senate is still scheduled to vote on the revised legislation on Monday, but that vote, too, could be delayed at the request of one of its sponsors.
At stake is the fate of hundreds of disabled people who have lived in facilities outside New Jersey for years and now face the prospect of being brought back to the state under Governor Christie’s Return Home New Jersey policy. Parents have launched a campaign to fight the policy, arguing that their children’s care would suffer and that the state already has a waiting list of 3,600 people who need emergency housing. The Christie administration has said that the state cannot afford to continue such an expensive program and that the residents would be relocated close to their guardians in suitable community settings.
As the emotional debate intensified, lawmakers from both parties sought to address those concerns through legislation. They came up with a bill that would allow about 365 of the 387 people affected to remain where they are, by specifying that anyone who has been in a placement for 20 years, or 25 percent of their lives, could not be moved. The bill also cited medical exemptions.
But the administration countered with amendments that would increase the residency requirement to 25 years, or 50 percent of people’s lives, remove the medical exemptions and allow the state to bring people back for financial reasons or if their guardians no longer live in New Jersey. With those changes, only about half of the people living in out-of-state facilities would be able to stay where they are.
A Senate committee approved the amendments on Monday, setting off another lobbying effort by unhappy parents.
On Friday, Assemblywoman Valerie Vainieri Huttle, D-Englewood, citing numerous calls from those parents, said she intends to present the Assembly Appropriations Committee with the original version of the bill when it meets on Monday.
“Everybody has a different concern,” she said. “With all of these concerns, I can’t in good faith move the bill forward with the compromise amendments.”
Her decision was welcomed by parents.
“I am so appreciative, and I am so thankful that someone is absolutely stepping up to do the right thing,” said Robyn Levine of Mahwah, who has been fighting to keep her 30-year-old daughter, Ashley, at a facility in New York. “I think what needs to happen is a discussion as to how we can properly help people. This wouldn’t even be a conversation if New Jersey had the right placements for these kids.”
Meanwhile, Sen. Christopher Bateman, R-Somerset, who worked out the compromise with the administration, said he’s moving forward with his version because he believes Christie would accept it.
“She can push her bill, but the reality of life is the governor is never going to sign it, so it’s really a disservice to the families,” he said.
However, Bateman’s plan may yet be upended. Another sponsor of the bill, Sen. Jeff Van Drew, D-Cape May, now wants to pull the measure because of the parents’ concerns and has appealed to Senate President Stephen Sweeney, who holds the ultimate power to decide if the vote will take place.
The state Department of Human Services does not comment on pending legislation and legally cannot speak about individual cases, spokeswoman Pam Ronan said Friday, but she said the state tries to find the best programs and services for each individual.
“As illustrated by the 170 people who have successfully returned to the state, the division is dedicated to working toward meeting each individual’s needs, even very complex needs,” she said. “This applies to both our in-state consumers in need of programs and out-of state division consumers.”
Opponents argue the moves are about money, not what is best for the individuals.
“Even many of the people who make the 50 percent cutoff will be eliminated with all the different hoops they have to jump through,” said Marcia Adams of Hamilton, whose 31-year-old son, Drew, is in a facility in Pennsylvania. “The other additions are a nightmare.”
Adams was one of several parents who opposed the amendments at Monday’s hearing. Her son, who is blind, developmentally disabled and suffers from seizures and osteoporosis, would miss the 50 percent cutoff by two years. Adams and her husband have been fighting his transfer, saying the state isn’t offering to pay for a one-on-one aide, which he needs to get around, after they bring him back.
But Bateman said it’s necessary to include funding language in the bill, “so that out-of-state facilities can’t hold the state of New Jersey hostage” with cost increases beyond what the state would pay to house the person in New Jersey with the help of federal aid.
He said opponents of the amendments are “looking to shoot a hole in anything,” and he added, “I’m trying to do the best I can for the most people I can.”
An Office of Legislative Services audit from December 2013 estimated the state could increase its Medicaid reimbursement by $20.7 million by moving people back to New Jersey. Ronan said any savings would be put into programs to provide more people with services.
So far, the Adamses have met with 14 different providers, none of whom can offer the level of care their son needs at the price the state is willing to pay, they said.
“Group homes are great for people who are higher functioning, but for people who are lower functioning or have a lot of medical needs like our kids, it doesn’t work,” she said. “They just don’t care.”
Parents of children with disabilities who are already living in the state say Return Home New Jersey is hurting their families, too.
Lucille Schoales has been fighting for years to get her 29-year-old son, Michael, out of a group home in New Milford, where she said he has been so neglected that he was rushed to an emergency room with a high fever and severe dehydration. Michael, who is autistic, has been on an emergency transfer list for two years.
Schoales, who lives in Emerson, wants to keep Michael near Paramus because he’s thriving at Alpine Learning Group, an autism treatment center that he has attended since he was 3.
She tried to move him into a housing program for autistic residents in Ramsey when it first opened but was told his funding didn’t match up because he was not a new placement. There is still an opening in that house, but Schoales said she has been told that it has been reserved for a Return Home New Jersey transfer. Instead, she said, the state has suggested moving her son to South Jersey.
Michael also has a part-time job in North Jersey, she said, thanks to the support he gets at Alpine Learning Group.
“He’s worked so hard to be who he is, and they don’t care,” his mother said. “They don’t care about what his needs are.”