The Woodbridge Developmental Center is one of two state-operated developmental centers being shut down as part of a shift away from institutional care. This is part five in an occasional series of stories about people with autism in New Jersey. The entire series can be found at www.gmnews.com/autism. T he range of services for adults with autism in New
Jersey has steadily evolved since the mid-1900s, from a system keen on large-scale, segregated institutions to one that pushes for community-based living.
That is expected to continue to the point where any look into the inner workings of the present service structure is but a fleeting glance, said Liz Shea, who oversees the state Division of Developmental Disabilities.
“This is an interesting period of time in New Jersey for developmental disabilities, in that if you took a snapshot two years ago or two years from now, where we were then and where we’re going to be are so vastly different that it will almost look like 30 years have passed,” she said.
One of the division’s guiding principles is the drive to keep individuals out of institutional care. The agency halted admissions to developmental centers in December 2011 and is preparing to shutter two facilities, Shea said.
A landmark U.S. Supreme Court decision, federal regulations and a belief in integration led state officials to take on reforms that aim to serve a greater number of people with developmental disabilities in the broader society, she said.
“Individuals with any kind of disability have the right to experience life in their communities and participate in meaningful ways,” Shea added.
Self-directed services allow families of people with autism a budget to design schedules based on the needs and desires of their children. That method has been the exception among the division’s clients, but Shea said she plans to make self-directed services the norm in the near future.
That approach breeds flexibility in a system that is controlled by both the state and the federal government, she said. It opens doors to unique agendas built on employment, volunteer activities, day programs and therapies for people with autism, rather than cookiecutter offerings.
Housing and support services could soon change as division officials vie to separate the two components. Right now, most care providers own the dwellings in which their clients reside, leaving little recourse for those who like their living environment but are unhappy with their supports, Shea said.
“We’d like to get to a place where the housing is set and the people have control over their housing, and if they don’t like their services, the services move,” she said. “That separation is a huge, huge change from where we are now. It’s going to take us time to get there, but there’s also a lot of pressure federally around that being best practice.”
Even so, housing options have come a long way from the oncedominant presence of sizeable institutions, she said. Group homes began to take hold in the 1980s, followed by smaller supervised apartments in the 1990s and additional types of supportive housing units today, she said.
A forthcoming payment policy is slated to further improve the services rendered to individuals with autism, Shea said. The division is moving toward a fee-for-service model, which will put an end to state contracts that result in monthly payments to care providers before services are performed.
The contract system has imposed restrictive limits on division clients through space constraints and geographical mismatches, Shea said.
“There’s going to be a certain kind of free market that comes alive with the providers that I think is going to allow, from a quality place, people to take their money and walk … if they don’t like their services,” she said.
Because the feefor service model will not require payments for work that has not yet occurred — and, in some cases, will never occur — division officials believe they will make better use of every dollar.
“In the new system, they’ll provide the service and then they’ll be able to bill for that service,” Shea said. “It lets us find the places in the system where money is going, where it’s really not making its way to people and actual direct services.”
Division officials also hope to save money by cutting programs that already exist down other avenues, she said. These may include offerings that are available to the general public but are unnecessarily duplicated by the division for people with developmental disabilities.
Money is key to unlocking a larger supply of services, said Suzanne Buchanan, executive director of Autism New Jersey. Advocacy groups like hers must undertake efforts to hammer that message into the public consciousness in the future, she said.
“Our current economic structure does not provide enough public funding for all individuals who are vulnerable or who have clinical needs,” she said. “That creates this very real limit to the dollars that are available to serve individuals with autism and other developmental disabilities.”
State officials have taken steps in recent years to swell the coffers of the public agencies that fund those services, Buchanan said. But with the publication of each autism prevalence report — which often labels the disorder an urgent public-health concern — the call to action grows stronger, she said.
There is reason to believe that the status quo can crumble at the hands of a well-oiled information drive, as seen by advances in the clinical treatment of individuals with autism.
Years ago, many professionals did not believe people with autism could learn new skills or adapt to function in society, Buchanan said. But scientific research and firsthand accounts altered that narrative and eventually ushered in the age of applied behavior analysis and evidence-based practices in the treatment of those with autism, she said.
“There’s so much more science based guidance for families and professionals than there ever was before,” Buchanan added.
The rise of the Internet played an important role in boosting awareness of best practices, she said. Now more than ever before, families of people with autism can tap into records of properly vetted resources for their loved ones, she said.
Deborah Spitalnik, executive director of the Boggs Center on Developmental Disabilities at the Robert Wood Johnson Medical School of Rutgers University, said future policies should take advantage of new technology, as well.
“There’s tremendous innovation going on with fairly generic technology — meaning iPads, iPhones and Android devices — have enabled people to function and have a higher degree of independence,” Spitalnik said.
The right apps can help people with autism learn, express their thoughts and ultimately find their place in society, she said.
Many school districts have climbed on board with that idea, she said. An emphasis on technology would improve the adult-services system and — perhaps most importantly for those aging out of high school — establish continuity between adolescence and adulthood, she said.
“And that’s the goal of the transition,” Spitalnik said.
In an ideal world, young people with autism would seamlessly shift from school to the real world as funding sources change behind the scenes, she said. But right now, families must adjust to the operations of several different public agencies come each new stage of life, she said.
“There’s a lot of information about that that is being provided to people, but one thing that families express is a gap for them is somebody to walk alongside them negotiating these systems,” Spitalnik said.
If policymakers opt to answer that call, well-trained mentors could quell the headaches borne of a complex, ever-growing adultservices system, she said.