So, that meeting I'd mentioned to you back in January about planning for the future for children with special needs, the one I needed my big-girl panties for, got postponed because of snow. The rescheduled meeting took place the week my dad died and I went—because I thought it was important, and I figured I couldn't feel any more upset than I already was.
I was wrong.
The deputy commissioner of our state's Division of Developmental Disabilities spoke about the long wait list for community services for adults; some had been waiting for a decade. Community services means day programs, residential placement, therapy, behavioral support, and job coaching, among other services. The wait list in my state keeps growing. A person can make it off the list asap only in case of emergency (say, if an elderly parent caring for him or her dies). "I don't believe in my lifetime we will ever fully fund the waiting list," the deputy said.
The problem is rampant around the U.S., made worse by the financial crisis. Last week, Disability Scoop reported on a federal class action lawsuit filed on behalf of 19,000 Florida residents with disabilities who for years have been on their state's wait list for community services.
That search for services is the theme of a documentary I recently screened, Autism: Coming of Age, sponsored by the Massachusetts Mutual Life Insurance Company. Thought-provoking, insightful, troubling yet hopeful, it follows three families of adults with autism, all men, and the challenges (and triumphs) they've had getting services.
In the next 10 to 15 years, some 800,000 children with autism will age out of their school systems; they will need resources from the federal and state governments, but they may not get them. "I worry about the scarcity of government resources for people who have autism in their adulthood," says Fred Misilo in the film, a special needs attorney and the former deputy commissioner for the Massachusetts Department of Developmental Disabilities.
States, the film explains, tend to fall into two categories: The kind that make IQ a cut-off for services in adulthood, and the kind that go more by developmental disabilities (IQ is still a criteria but not as central). The particular problem with autism is that not everyone with autism has an intellectual disability, so while a person may definitely need support, he or she still may not qualify.
About to run screaming from your computer?
Stay calm. Back away from your panic button. This may seem bleak, but there is hope, no matter what your child's disability.
An elderly lady at the meeting I attended who seemed to be a staffer (she didn't identify herself) and who'd clearly seen a lot stood up in front of the audience and stared kindly at what must have been a sea of horrified faces. "Do NOT be discouraged," she said. "Forget the waiting list!" And then she spoke about combining resources, such as Social Security money and Medicaid money, or getting together with other families to buy a condo and present it to HUD for funding. "You have to piece it together to build as much support as you can," she said.
Also hope-inspiring is "person-centric planning," which allows people with disabilities to use Medicaid funding to live and work in their communities (rather than going into an institutionalized setting). It's all about personalized care, and takes into account what's key for the person to be successful an what natural supports exist in his life. One of the adults in the film, Tomas, who is nonverbal, lives in a two-bedroom apartment with a non-disabled roommate who gets free housing in exchange for looking after him at night. Tomas lives near his mom and grandparents, as he wants to, and spends weekends with them.
More and more states are looking at person-centric planning as an option, though it will take years for them to implement it. It's a seismic change in the current system and in who has control (clients and families will have more say in what happens), and new and different resources will be necessary to make it happen.
But to those of us with young children, there is hope. For now, the best thing to do is consider estate planning—setting up a will with provisions for your child and considering the possibility of a special needs trust (also known as a supplemental needs trust) down the road.
Autism: Coming of Age is being showed on PBS stations around the country for the rest of the year; check your local PBS listings, or get airing updates on MassMutual's Facebook page.
I can give away my preview copy of the film; if you'd like it, mention it below and I will pick one person at random to send it to (if your email is not visible on your blog, be sure to leave it).
Note: In honor of Autism Awareness Month (April), PBS NewsHour is airing a six-part series on autism, "Autism Today," beginning April 18.