Critics: NJ lacks programs for autistic adults

WOODLAND PARK — Delia O'Mahony moved back to New Jersey a decade ago seeking better educational opportunities for her autistic son, Jonathan. "We were living in the country in Ireland and they didn't know much about dealing with autism," said O'Mahony, who returned to the U.S. after her Irish husband died of leukemia. But when Jonathan turned 21 four years ago, she was disappointed to learn that programs for autistic adults seemed just as scarce here. In fact, New Jersey suffers from a severe shortage of programs geared specifically to the needs of adults with autism. That situation is likely to get considerably worse in the near future, as large numbers of autistic children graduate from special education and will likely need adult services. To make matters worse, a state policy designed to give families of developmentally disabled adults more control over care options actually denies non-profit agencies the seed money they need to create new programs New Jersey has the highest documented childhood autism rate in the nation; a Centers for Disease Control study in 2007 found that 1 in 94 kids in the state has the condition. Many of those children, if not most, will need continued services as they grow into adulthood. And the programs for adults with autism are few and far between. "There's a tsunami of these kids coming and there are not nearly enough programs," said Carolyn Hayer, a Hackensack advocate for community programs whose son Chris is autistic. "To invest all that special-education money in these kids and then leave them at home watching TV is criminal." Jonathan O'Mahony didn't sit at home, but for three years the only program his mother could find hardly met his needs either. At first, his case manager at the state Division of Developmental Disabilities provided her with a three-page list of local agencies; most didn't specialize in programs for the autistic and had no openings anyway. She enrolled him in a day program that served adults with a range of developmental disabilities, not just autism. "They were lovely people and a lovely environment, but they don't have the staff or expertise to work with autism," said O'Mahony, who lives in New Milford. "But what could I do? The other choices were horrible." Many non-profit agencies and groups of parents of young adults with autism would like to create programs for them. But they are frequently stymied by state funding policies that leave them short of the money they need and force them to rely heavily on charitable fund raising. One of the few programs that parents of adults with autism managed to get off the ground several years ago is Quest Autism Programs in Wyckoff. The difference has to be made up through fund raising; the division won't allow programs for adult disabled individuals to charge clients fees beyond what the state pays. In most cases, the clients have little or no income anyway beyond their disability checks from the federal government. Both Quest and Alpine are looking to expand their programs, and several other non-profits that serve other people with developmental disabilities have proposed new programs for adults with autism. But the new way the state funds such agencies is making that difficult to do. The state will no longer provide agencies with any funds to create programs. Instead, the division now gives families a budget with which they can pay for the services they select. By putting control of the spending in the families' hands, the state's theory goes, community agencies will have to create programs that provide the most needed services since those are the ones that families will choose to pay for. "We don't want to tie money to a slot at a program; we want to tie it to a person," explained Dawn Apgar, the state's deputy human services commissioner and interim executive director of the division. The policy is across the board, affecting programs for all disabled adults, not just those with autism. "We want people to have portability. If you're not happy there and you want to go somewhere else, you can." But the state's funding policies leave programs in a classic Catch-22: The only way for a new program to get start-up money is to sign up enough clients to pay for it. But agencies find it almost impossible to get families to sign up for a program that doesn't exist yet. "We're trying to figure out how to expand two new programs," said Kathy Walsh, CEO of the Arc of Bergen and Passaic Counties. One is for young adults with autism graduating from special education programs, the other for developmentally disabled people with intense medical needs - those who live in wheelchairs or are tube-fed. "We would need more trained staff, a van for transportation, a site to put the program in. Everything has to be wheelchair-accessible. You need to have a lift for the wheelchairs," Walsh said. But the new funding policy is making it impossible for the Arc to get the start-up money it needs. "What do we tell the families to do: Wait for us if it takes six months to develop a program? But at the same time, we need a certain number of people signed up to move forward," Walsh noted. As non-profits, the community organizations can also ask donors to contribute to capital-construction campaigns. "But there's a limit to how much money you can raise," she added. Apgar said the division recognizes the problem and is trying to figure out a way around it. "We're trying to work with the providers to see if we can identify a cohort in advance that needs their service," she said. "It's a balance of building capacity and allowing freedom of choice."