Cathy Douma’s autistic son has languished for five years on a state priority list for housing for developmentally disabled adults. She got a status letter recently. Jeffrey, 26, is number 2,395.
“When my husband and I die, what will happen?” worries Douma, of Morris Township, who is in her late 50s.
Douma's concerns are shared by many New Jersey parents whose adult autistic children are aging out of the public school system in record numbers, but still need help managing day to day.
Her fears are well-grounded.
Parents say, and the state readily acknowledges, that because of high demand, and the cost of providing such services, there aren’t enough day programs for autistic adults, for whom a rigidly structured program is a lifeline to the world outside their homes.
The shortfall isn’t the only problem facing families with adult autistic children. The state system is difficult to navigate, making it tough for parents even to discover what limited services are available.
For families who want their adult children living in supervised residential settings, the situation is critical. Until more funding is found, the beds are largely limited to autistic adults who lose their caregivers, say state officials.
“Right now we’re treating those placements as emergency placements," said Nicole Brossoie, assistant commissioner for public affairs in the Department of Human Services.
In the 1990s, the number of children diagnosed with autism skyrocketed. Those kids are now reaching adulthood in a state with the highest autism rate in the country.
As autistic children leave school at 21, their families encounter a system overwhelmed by demand for services for young adults diagnosed with a development disorder that limits communication and social interaction and is characterized by repetitive, compulsive behavior
“When he graduates, what are we going to do?” wonders Barbara Wells of North Hanover Township in Burlington County, who is trying to plan ahead for her 18-year-old son, Ian. He struggles to follow instructions, but has been able to work at a drugstore thanks to a school internship that gave him a job coach.
“I want him to have a meaningful life, not just sit in front of the TV. I want him to have a job and a social life,” said Wells.
The public school system provides autistic children with educational services, care, transportation and a safe environment. When they graduate, their parents must work within the state system to find programs and get funding for the services they require.
But the barriers to obtaining services for autistic adults have been well- documented.
A report by an autism advocacy group, the New Jersey Center for Outreach and Services for the Autistic Community, released four years ago said the need for adult services had tripled since 1999 but found inadequate funding, a fragmented system of information, and poor preparation for adults leaving school.
A report released this summer by Autism New Jersey continued the call for more and better adult services, including employment help, day programs, better access to residential services and clear guidelines on how to navigate the services available.
Last year, the state Department of Human Services issued its own task force findings, calling the need for services “a looming crisis” and offering 44 recommendations ranging from more money to help transition students leaving school to an expansion of daycare programs.
The top recommendation, establishing an Office on Autism, was acted on over the summer, with its director, Deborah Cohen, having chaired the task force. She is also director of the Office of Prevention of Developmental Disabilities.
“The initial work will focus upon improving and enhancing the services now available within state government,” said Cohen.
Cohen acknowledged the growing demand for programs, but points out the tremendous costs involved at a time when the state faces a budget crisis.
Providing families with some glimmer of hope is that for the first time, the state put a line item of $2.3 million in the budget this year to provide a consistent stream of funding to help smooth the transition from school into other day programs.
“Things are improving, but the need is still great,” said Linda Meyer, executive director of Autism, N.J.
In June, 1,009 students with developmental disabilities, including those with autism, graduated from the school system, and half of them sought funding for daycare services. The state funds amount to an average of $22,000 per graduate.
If the adults qualify for a community waiver, which is partially federally funded, they can get additional services aimed at keeping them in their community and out of an institution. The waiting list for a waiver, however, nears 8,000, according to the state.
The Division of Developmental Disabilities spends $40 million annually on services for eligible adults -- it doesn’t break out those with autism -- and federal funds account for $5 million of that. Cohen said the state is applying for more federal funds for family support services such as respite care, camp and behavioral support at home, but the process is a lengthy one.
“We do know the number of people the division services has been steadily increasing,” she said.
For families with autistic children, one of the most sought-after programs in the state is the Princeton Child Development Institute, well-known for its success in treating, educating and mentoring autistic children. Its program for students who age out of school is limited to 22, nearly half of whom are in community-based group homes. The adults work, some in data entry or ground maintenance.
At roughly $35,000, the adult day program, which provides a high ratio of staff to student, does not come cheap,
Yet Executive Director Greg MacDuff points out the even higher cost if the young adults are not given the support to work and improve their life skills.
“Most of the adults I’m serving now, if not for our programming, would be in institutions,” said MacDuff, who noted that the Institute plans to work with other specialized schools to replicate its adult programs.
Douma’s son is enrolled in a daycare program in Morristown, called the Daily Plan It. He has limited verbal skills -- saying, for example, “Dinner or no dinner?” when what he means to ask is “What are we having to eat?” He also exhibits obsessive, compulsive behavior. He is in the day program from 9 a.m. until 2 p.m. and his work includes things like sending out mailings and cleaning offices.
There is no other program available for him after that, so Douma and her husband, who are retired, keep him busy by going to the library, raking leaves or volunteering at a food pantry. What they don’t want is for their son to regress.
“We want him to be happy and productive,” said Douma, whose only respite comes when Jeffrey’s grandmother watches him or he goes to a two-week summer camp.
Essex County parent Lisa Rader’s autistic son is just 13, but she is already looking ahead at what might be available -- and doesn’t like what she sees.
“There are just not enough programs, period,” she said.
She has gotten training in working with people with autism through Caldwell College’s graduate program in applied behavioral analysis. She is now on a mission to start an adult daycare and residential program in Essex County. Along with other parents, she is the process of putting together an application to form a non-profit so they can start getting funding.
“I’m looking at this as a matter of survival. If something happens to me where is he going to go?” the single mother said.
Meyer, with the advocacy group Autism New Jersey said she is hopeful that the establishment of an Office on Autism underscores a commitment by the state to coordinate the services families need and focus on more federal aid.
“A generation is leaving the system,” she said. “Our hope is, parents are able to access the services they need.”