A group of autism advocates took to Capitol Hill Thursday morning pushing an ambitious new agenda to better serve adults on the spectrum.
In a series of policy recommendations, advocates from a consortium made up of a dozen organizations including Autism Speaks and Easter Seals highlighted the needs of adults with autism when it comes to learning life skills, accessing qualified support providers and obtaining funding that’s flexible.
Organizers of the advocacy effort known as Advancing Futures for Adults with Autism estimate that more than 500,000 individuals with the disorder will enter adulthood in the next 10 years. They are urging Congress to pass reforms within the next year to meet the needs they’ve identified.
Specifically they’re looking for Congress to give adults with autism more access to public funding and greater choice in how such money is used for their benefit. They also want federal lawmakers to take up legislation to include social skills training within the special education curriculum, create incentives for developers to build housing that’s autism-friendly and expand employment supports, among several other issues.
What’s more, they’re pressing lawmakers to move forward with a previously proposed bill known as the ABLE Act. This legislation would allow Americans to establish tax-free savings accounts for people with disabilities much like those already in existence to help people save for college.
“We are not asking for a handout, but rather for the creation or expansion of programs that will maximize the potential of the growing number of people with autism and minimize, in the long run, the cost to society,” said Peter Bell, executive vice president of Autism Speaks and co-chair of Advancing Futures for Adults with Autism.
Ideas for the policy agenda came out of a national town hall meeting held last fall in Chicago. More than 1,200 people from across the country participated in the brainstorming session through several satellite locations.
Organizers said more than 250 people attended the Capitol Hill meeting Thursday including Sen. Robert Menendez, D-N.J., Rep. Mike Doyle, D-Penn., several Congressional staffers, representatives of federal agencies and members of the community.
While efforts this week are focused on federal policy leaders, Bell said that both public and private partners will be needed to address what he called “a scary future for adults with autism.”
Our family likes the 529 plan that we have in Illinois; we contribute to it monthly for our son, who is not on the spectrum and who, we expect, will attend a higher education institution after high school. For parents with children who may be unlikely to take college classes, it seems like a perfectly equitable arrangement for them to have the same advantages of a savings plan (such as a 529) for their child to use invested funds for support once they become an adult. I’m just not sure about how the criteria to have the funds released would be set up–would be quite different than the 529s.
I attended most of this Capitol Hill session. I was there when Senator Menendez spoke and truly enjoyed that in particular. I heard some panels speak, like one with a man with autism in a documentary, “Dad’s In Heaven With Nixon,” was on it. He amused us when he said he wished utility companies told him what all the #s meant on his bills! He has two jobs and lives independently in CT I think it was.
One panel covered jobs for those with autism. A young man with his older father said he had a kettle corn popcorn company, his own. He said, with a device, state agencies do not push entrepreneurship.
Another panel was on housing needs.
In between panels, M. Resnick spoke at length on needs of adults with autism.
Unfortunately, I could not stay to hear all panelists: Ms. Resnick’s statement took up time. So, I missed the final panel in full.
Many panelists with autism came with a parent or sibling. No panelist had job coaches or peer mentors.
Attendees in the audience seemed to be parents or staffers.
(I personally got a detailed responsive email by Senator Barbara Mikulski about it, so hopefully she sent a staffer.
msherrett
I want to say thank you for going to congress. I’ve had many sleepless nights worrying about what my son is going to do when he becomes an adult. There are no benifits for adults with autism. The school told me last year in his IEP meeting that they wanted to label him as MMR before he goes to jr high so he could recieve services as an adult. That has added to my stress. We are like most families, we live paycheck to paycheck there is no exta money to put into savings for my son as he becomes an adult. Just to recieve help for my son has been hard. When your a new parent getting into the disability system is hard. Who do you turn to with questions? My doctor was no help because insurance didn’t cover any further testing. Thank god I’m a parent who doesn’t take no for an answer. Things need to change as more children are getting autism now.