From the day Nick Starita started at the UCP of Hudson County – where he has been executive director for 20 years, — he had one goal: to make certain that middle income people didn’t have to go broke to provide care if they had a child with disability.
But currently the state is in middle of revamping its rules for providing care, and some service providers such as UCP are caught in the middle, struggling to meet the growing demand for help, while at the same time struggling to find money with which to do it.
UCP (which stands for United Cerebral Palsy) is one of the key providers of services to the disabled, not just throughout Hudson County, but also in Passaic, Essex and Bergen counties as well.
“We help people with other developmental disabilities, not just Cerebral Palsy,” said Keith Kearney, associate executive director.
The name derives from its founding in 1951 when the group formed an association with the national organizations. But over the years UCP has gone on to develop programs for people with various disabilities.
“Only a small percentage of the people we help now have Cerebral Palsy,” Kearney said.
The administrative offices and the Pediatric Medical Daycare programs take place in Bayonne. There is also two Growing Tree Learning Centers located in Jersey City and an After School Program and Saturday Respite that take place in Hoboken.
UCP also runs the Adult Special Needs Program, the Adult Aftercare Program, the After School Program and the Saturday Respite at the UCP Center on Kennedy Blvd. in North Bergen.
While many programs are run out of its centers, the reach of UCP is made greater by its in-home programs.
“We provide services in home and in our facilities,” Kearney said.
People in North Bergen, West New York, Bayonne, Hoboken, Kearny, Harrison, and even tiny East Newark get help.
With its administrative offices located in Bayonne for about five years, UCP has been trying to meet the needs of the community. But some programs such as its Pediatric Day care facility have a waiting list.
“Children require services,” said H. Reggie Neil, director of Clinical and Social Service, “But with the moratorium we have to wait until children are rotated out before we can take any in.
Kearney added that UCP and other service provides like it are caught in legislative red tape. The state legislature is supposed to be revamping the regulations for programs – at least in part because Medicaid pays for some of the services.
“Everything has to do with the budget,” Neil said.
In response to a lawsuit, the state is required to come up with what is called a Homestead plan. But the state has yet to provide money that would allow for people to be housed out in their own homes.
“Sometimes programs in centers are not appropriate to the person,” Kearney said.
The support would help people in their own homes, and this would involve a 24 hour a day staff.
About 3,000 people are being serviced now throughout the state with only about a half dozen service providers.
There are about 7,000 to 8,000 people or more who are waiting for help
Even when funding comes in, it often if at all, increases to meet the cost of living so that the same money a year or two ago doesn’t cover the same costs today.
“So state and federal authorities need to tie aid to the CPI, said Starita.
Individuals are referred to the program from the state, and this is tied to funding and the Department of Human Services budget. So when the state cuts the budget, programs such as the UCP’s suffer.
The other problem is that the state must match funds the federal government gives.
So that when the state cuts back on its budget, the federal donation also drops.
The program has been losing federal funding for years and with little or no increases yearly for cost of living increases so that in some ways UCP has to do the same or more with less money. Over the years, UCP has lost millions in potential aid, Starita said.
UCP has talked about the problem with some state legislators, hoping that the matter can be resolved.
But Kearney said the UCP is also looking for alternate funding, perhaps corporate sponsorships
Kearney said raising funds is a bit of a challenge, since UCP doesn’t have the staff.
“We do have some annual events such as the golf outing in early summer which is primary fundraiser,” he said, “but we’re looking to expand.”
While UCP already holds a fall event to recognize those who help, they are looking to create another similar ceremony as a fundraiser.
Aid for the organization isn’t always about money. Volunteers – including interns such as those they already get from Kean College, help,” Neal said.
Students also volunteer through high school programs in Bayonne, North Bergen and Jersey City.
Starita said one of the keys to making UCP work is the fact that those here have their heart in the effort
“If your heart isn’t in this, you’ll never last,” he said. “This isn’t just a job, it’s personal. Most of the people here have some personal reason for being here.”
Kearney said one of the challenges is to match up people here who have business savvy, but not the business mind frame.
“People who work in this field are different from people who work in a Wall Street company,” he said.
Getting over public misperceptions is also a chore.
People with disabilities aren’t sick, they are disabled,” Kearney said. “You cannot catch anything from the individuals here.”
Starita said one of the efforts over the years was to main stream individuals, to bring them into contact with the outside world.
Children with disabilities usually don’t mingle or get involved. But through programs at the UCP, they are integrated with other children so that children without disabilities learn to accept those with disabilities.
While some parents express fears that including disabled with non-disabled students might hold back the non-disabled from advancing, Starita believes that a different kind of education is taking place, giving children sensitivity to those in need
Neal said one of the reasons he is involved with the local Rotary Club is to increase the awareness of UCP in the community.