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Rally seeks more funds for disabled respite care Wednesday, May 18, 2005 By KAREN AYRES Staff Writer Diane Sanders-Gomez doesn't go to church anymore because she knows her daughter wouldn't sit through the service. The Washington Township mother even finds it difficult to take 8-year-old Allison, who suffers from autism and epilepsy, to restaurants or movies with her little brother. And with Allison needing constant supervision, Sanders-Gomez and her husband don't often make it out of the house by themselves.
"Thank God for my family or otherwise we wouldn't get out at all," she said.
The family asked the state for help when they moved to Mercer County two years ago, but they still haven't gotten "respite" care services from the state Department of Human Services (DHS) for someone to help watch Allison.
And their chances don't look good.
Though two-thirds of the 35,000 people with developmental disabilities who are served by the DHS live at home, only 6 percent of the $1.2 billion funding pot goes to help their families and the cash allocations largely won't be boosted in this year's proposed budget, despite the growing demand.
Chanting "Families can't wait,"
about 75 parents, advocates,
"The families' needs are growing exponentially," said Eric Joice, executive director of the Epilepsy Foundation of New Jersey based in Trenton. "Many families have arrived at the conclusion that they're never going to qualify for services at all."
The DHS launched a program called "Real Life Choices" two years ago to help fund more at-home services, such as home renovation projects or care from friends.
But it wasn't expanded in this year's tight proposed budget and funding for respite care and other similar family services hasn't increased in three years.
Gary Brown, a DHS spokesman, said the agency wants to give people living at home more options, but it is limited by the size of the budget. Right now, the agency plans to spend about $72 million on at-home services in fiscal year 2006.
"Clearly the demand for services outweighs our capacity," Brown said.
Ethan Ellis, executive director of the New Jersey Developmental Disabilities Council, which organized yesterday's rally, said the state needs to move faster to fund at-home services. "There is no reason in this tight budget season to move slowly when you know what you want to do," he said.
Like other advocates, Ellis noted that at-home services are significantly less expensive than the price of putting someone in a group home or a supervised living situation.
The average residential placement costs the state about $90,000 a year, Brown said, while at-home costs in the new Real Life program range between $14,000 and $63,000 annually.
About 23,000 of the 35,000 people cared for by DHS' Division of Developmental Disabilities live at home. Brown said most of those served by the division are over 18.
Though the new at-home program is available in 11 counties, including Mercer and Burlington, it won't be able to handle additional families in those counties or expand to other areas without more funding.
Lauren Agoratus of Hamilton said she received respite care for her 13-year-old daughter five years ago after struggling to pay the youngster's medical bills for years and keeping a constant watch over her at home.
Now, Agoratus gets 20 hours of respite care a week from the DHS for her daughter, who has autism and end-stage renal disease.
As of the end of March, about 7,500 people with developmental disabilities ranging from mental retardation to cerebral palsy were on a waiting list for a residential placement, Brown said. Though about 3,300 of those people were considered to be in "priority status," Brown said most view the list as security for the future and many have rejected out-of-home placements in the past.
Still, Brown said, DHS wants to change the way it does business and focus on programs at home. "We're trying our best to look at other methods of funding for increases," Brown said. "But in the absence of a budget increase it's going to be challenging to expand. We're just grateful that we haven't seen significant budget cuts in this environment." Sanders-Gomez stopped to watch a DHS budget meeting yesterday while she was at the State House.
Overall, the agency's proposed budget hits $10.1 billion, which includes about $362 million more than the current fiscal year. The state also has proposed new funding for mental health beds and child welfare programs in the tight spending plan.
Sanders-Gomez said yesterday she formerly used to received respite care for her daughter when she lived in Warren County several years ago. "That allowed us to get out of the house," she said.
But the family lost the respite care, which is doled out regionally, when they moved to Mercer. So unless someone leaves the program or more cash is added, she doesn't expect her situation will change.
"We're getting nothing and there is no hope of getting anything because there is no money in the budget," she said. "It's rough. Even getting to McDonald's is hard."
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Without
those options at home, families are left to pay for services themselves or
ponder an out-of-home placement. 
