The rate of autism diagnosis has risen sharply over the last decade. While the struggle to get services for children with autism is well known, services for adults are far less available. Already, there are waiting lists for services and residential placements–and the numbers are expected to grow exponentially over the next few years.
Brad Mallory, 22, was happy to be finished with high school. But Mallory, who has autism, soon found he had nothing to do and nowhere to go. He mostly stayed at his home in the Philadelphia suburbs. His mother, Joanne Mallory, worried about her son’s future, and wanted him to learn how to take care of himself, with some help.
Until an individual graduates from high school, services are paid for by their school districts, but that funding ends at age 21. Families have to apply for new funding sources, for example Medicaid, and often face long wait times for services–if any are available at all.
Joanne Mallory searched online, and found a day program for adults with autism. She worked through a maze of paperwork, applied for state funding, and enrolled her son in a program called CAAPP, the Community Adult Autism Partnership Program. It’s run by Devereux, a nonprofit service provider for those with intellectual disabilities. Now Brad Mallory is out and about every day. He says he goes to the gym, has outings with other adults with autism, goes bowling and swimming.
His daily activities are geared toward gaining independence. Case worker Alex Mangisi said he is learning everyday tasks, such as doing his laundry, and the steps involved in using public transportation.
With help, he faces his fears
Mallory adds that he has also learned how to do his own grocery shopping. He used to be scared of the people he would encounter in the store, but is not afraid of it anymore.
Mangisi says his goal with clients such as Brad, is to become obsolete. “The ultimate goal is for us to not be there, for Brad not to need any of us present,” said the caseworker.”
Nina Wall Cote heads Pennsylvania’s Bureau of Autism Services. She says all programs for adults with autism should be based on the concept of lifelong learning.
“The goal is really to move people forward all the time,” said Wall Cote. “I think there is sometimes a belief in the developmental disability service arena where individuals sort of plateau, and our models have been custodial.”
Her department has developed several programs specifically for adults, but space is limited and can only accommodate a fraction of this growing population. There is also a big price tag attached. Mallory’s program costs about $30,000 a year, and that’s on the lower end.
Wall Cote said states around the country are seeing an explosion in the number of adults with autism, and can’t shoulder the burden of serving them alone. “It’s going to require partnerships between the public system and the private sector, and community, the nonprofit sector,” she said. “I don’t think that the public system is going to be able to sustain what it currently is navigating.”
There is some progress
Many small steps are moving in that direction. Autism New Jersey provides extensive resources for families online and in a DVD series.
Finding employment is a big issue. The nonprofit provider Autism Delaware forged a partnership with a service company called Sodexo. Sodexo employs five young adults with autism at Albert I. duPont Hospital for Children. They work in the kitchen and laundry room.
Terry McClain, the head of human resources, says it has been a win-win situation. “Our supervisors are thrilled because all of the group come to work all of the time, they never miss work,” said McClain. “And the family members are grateful, and we have developed personal relationships with some of the family members, so it’s been rewarding all around.”
In Pennsylvania, people can contact the State Office of Vocational Rehabilitation for help with employment options. But what’s available in terms of jobs and programs is far from enough to catch the wave of adults about to enter the system.
Most service providers and policymakers acknowledge that it’s the tireless efforts of families affected by autism that are bringing about changes, creating opportunities, connecting the dots.
Joanne Mallory has been Brad’s main champion.
“I just prepare for the future, because you have all the hurdles that you go through, but you have to think about everything,” she said. “Yes, that is kind of hard, but talk to people, go to support meetings, look for things on the internet as I did, you have to prepare for everything.”
She hopes that, with the help of programs such as the one he is enrolled in now, her son will be fine even after she is no longer there to do what she calls “the mom thing”.