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The Star-Ledger in N.J.. Pictured is Kevin McIvor.
TRENTON, N.J. — The state is about to propose a solution to one of its most troubling social services dilemmas — the backlog of thousands of developmentally disabled adults waiting for as long as 10 years to get admission to group homes.
Under the plan, families would receive an annual stipend of at least $10,000 to take care of their disabled children on their own, alleviating some of the hardships for parents whose children have grown into adults with little prospect of a place in the state group home system.
The details of the plan come from state human services officials who have recently been briefing families on what to expect in the coming months. New Jersey will have to get federal approval and financial help to make the proposal work.
Twelve years ago, five New Jersey families decided to jump the state's infamously long waiting list for permanent housing for disabled adults and created a housing facility of their own. The move was unheard-of but today the state is considering a shift in policy that could make setting up independent housing more common. (Video by Adya Beasley / The Star-Ledger)
Adopting the new system amounts to a blunt admission that the state may never be able to fulfill a promise lawmakers and officials made a dozen years ago that the state would provide enough housing to whittle down a waiting list that consistently tops 8,000. That promise was supposed to be fulfilled in 2008, but the waiting list doubled.
Many families say they are buoyed that the state is finally addressing a problem that has only worsened each year.
"This is huge," said Lowell Ayre, executive director of the Alliance for the Betterment of Citizens With Disabilities, an advocacy organization for group home providers. "We’ve been waiting for this for 10 years."
Christie administration officials say the state would still try to build group housing for the developmentally disabled, but the payment would help families acquire services such as part-time aides, pay for summer camp or buy vehicles with wheelchair access. Families could also pool their funds to set up housing arrangements on their own rather than wait for a state-sponsored group home to open.
There are 8,840 people with developmental disabilities in 2,200 state-licensed homes, according to the state. About 8,000 more are on a waiting list to get into group homes or receive services designed to meet their needs. Because of budget cuts, in some years 100 people on the list have moved into homes.
Many families abandoned hope long ago that their children would ever move into a group home, which state officials say cost about $120,000 each year to operate. As a result, few are being built or rehabbed and the waiting list just gets longer.
The stipends given to families under the new plan would not mean the waiting list will go away, and families can still remain on the list, human services officials say.
"This is going to give people hope," said Nancy Delaney of Convent Station, a critic of the current system and the mother of a 46-year-old son who saw the futility of putting their name on the list and bought a home in Whippany with four other families.
The state must first get approval from the federal government, which provides the Medicaid funds earmarked for people with developmental disabilities. State officials say they will seek federal permission to provide families an annual stipend of $10,000 to $15,000 — the exact amount has yet to be determined — to get whatever they need to help their child live more comfortably at home. Families will not actually receive any money but will be able to use the stipend on equipment and/or services authorized by the state. That would be in addition to $22,000 a person the state already spends on daily vocational and recreational programs.
The new plan would bring in more federal dollars — about $45 million in Medicaid matching funds that could be used to buttress the payments to families without having to increase spending by the state, said Pam Ronan, spokeswoman for the Department of Human Services, citing early estimates.
Delaney said she and other parents were relieved the state was willing to try a different approach.
"On the one hand, it’s discouraging to know the state is not putting together many group homes; they don’t have the money," she said. "On the other hand, I feel very upbeat. Giving people $15,000 is a good beginning."
Delaney said she hopes the money allows other families to provide the kind of housing her family has, describing a warm and supportive atmosphere in the home her son, Bob, shares with one man and three women.
"If you were to see them out in public, you would immediately see them as a family," she said. "If they go to a dance or dinner, they make sure the other one has a seat at the table. In the house, they will bring a cup of tea to each other."
Parents and advocates for the disabled have long pleaded for more supervised housing to enable people with autism and other developmental disabilities to live more independent lives. Parents and extended families are often the main caregivers until they grow old or infirm as their children languish on the list.
State officials said that with this new approach, they expect the wait to shrink over time, because three-quarters of the families on the list have told them that they would rather receive state assistance and take care of their child at home.
"Our goal is to not have a waiting list," Apgar told parents at a meeting in Morris Township. "For many people, the waiting list is not a great policy. Who wants to be number 4,000?"
Mike Brill of Howell, chairman of the New Jersey Family Support Planning Council, a family advocacy group, said he supported the new plan but noted it was just "an incremental improvement" over what we have today.
His son Marc, 37, was on the waiting list for 19 years and only recently started receiving work and recreational services from the state.
The new stipend "would not cover a lot," said Brill.
Some supporters of the plan also expressed concern the state will use the extra money it gets from the federal government to plug its huge budget shortfall. The state routinely transfers federal Medicaid money into the general fund, which pays for various state services from education to transportation programs.
"The big issue for us has been that all of the money from the waiver has to reinvested back into family supports, or it will fail," Arye said.
Bonnie Brien of Hillsborough, caregiver to her 25-year-old daughter, Rachel, and coordinator for the Family Support Coalition of New Jersey, is circulating a petition that more than 2,500 people have signed urging the state to use all of the new federal proceeds to expand the program.
Brien’s daughter has cerebral palsy and suffers from daily seizures. She needs help bathing, dressing and feeding herself.
"Every family needs helps," Brien said. "You really feel like you are an island at times. You become so isolated."
Brien is encouraged the plan would give families many options: "This puts money in the hands of the family to use it in the most meaningful way. Each family knows what’s best for them."
Dinah Fox of Madison, whose 22-year-old daughter, Robin, has autism, said she was gratified the state "was starting to address the problem in an efficient, constructive and positive way."
"Since Robin was probably 8 or 9 years old, I have lost sleep over what will be her future," Fox said. Weary at the prospect of waiting years for assistance, Fox said she and her husband leased a condominium six months ago, and the state pays for around-the-clock care. Fox said many families may not be able to afford to do this, and the cash would help. "I am hoping this is a watershed," she said.
