What will happen to my loved ones with autism when they are adults and I am dead? Where will they live? How will they work? Who will be their friend? Will they be happy and safe? Who will fight for them?
Last Friday, twenty-first century technology facilitated finding answers to twenty-first century questions. Autism’s vast increase in the past two decades has produced an urgent need for a national plan. In the last ten years, autism has increased 15-25 fold. The poster children are growing up, and need specialized supports and services that practically don’t exist.
A technologically advanced, interactive consortium met to define and shape policies addressing the unique needs of adults with autism. The Advancing Futures for Adults with Autism (AFAA) National Town Hall was held across the United States at 16 satellite sites, including Extraordinary Ventures, Inc. in Chapel Hill, North Carolina. The site was sponsored by Extraordinary Ventures, the Autism Society of North Carolina and Division TEACCH.
Produced by America Speaks, the all-day event facilitated discussion among more than 1,000 attendees to prioritize a list of preset strategies taken from a think tank. The final report will be available online in January 2010, with recommendations for an Autism Congress.
Individuals, parents, professionals, and lawmakers active with the adult autism community attended. Members sitting at my assigned table included original autism advocate Betty Camp, a residential service provider, a university Dean of Students volunteering as Facilitator, State Representative Verla Insko, Dr. Rob Christian of Carolina Institute for Developmental Disabilities, an Applied Behavior Analyst, a local management agency, and parents of adult children committed to community programs such as Extraordinary Ventures and Voices Together.
As we deliberated, submitted feedback, and voted our way through the day (no breaks) with laptops and credit card-sized touch pads, I couldn’t ignore a nagging sense of unrest. We have a technologically advanced society spending it’s technologically enhanced dollars to chew over the best way to do the most simple of human acts: caring for those who need help.
All the strategies put on the virtual table were certainly valid. The overall priority is how to convince federal, state, and local legislators to get involved and fund what is needed for adults with autism. Here’s our real test: Will our efforts make decision-makers open the wallet? How will we persuade that people matter first? Should we slickly market some sort of a National Autism Lottery to fund programs, supports, and services?
In the meantime, I scarfed all the attendees’ sturdy lunch boxes to take to TEACCH for individualized shoebox tasks. Like most who serve autism’s avalanche, their needed funds were also cut. Hopefully, North Carolina residents will continue to have the opportunity to “learn how to learn”. But without a major shift in government perception, only a few might be considered ‘lucky’ enough to fill salt and pepper shakers (see photo) for those who can still afford to eat out. Our loved ones deserve better.
I actually attended the event in Chicago and thought it was interesting. As a person that is from a state where a self-determined model drives services and supports I felt that was missing within the agenda that was put forth.
It didn\’t feel like the folks voting were doing so based on quality of life issues, nor providing for more choice for individuals with autism. What it felt like was what was best to meet the needs of care providers and their fears as well as how to best support providers.
Community access and supported living, employment, as far as choices for individuals with ASD didn\’t seem to be a priority. The difficulty here, as I watch was, realizing that only one percent of those voting were individuals with ASD. Also the demographics of individuals who participated were not reflective of the ASD community in my mind, 83% white, majority of an income level over $100,000 per household, and education level majority was over four years of college.
I do hope that we move away from doing to individuals with ASD to meet the needs of others to make them feel safe and secure, to a model of choices for individuals with ASD within supports that are appropriate to allow for choices like we all make on a daily basis. Even individuals with the most complex challenges of ASD do make choices daily and if they don\’t, it\’s because that option has been taken away.
I do hope that this agenda is not rubber stamped and moved forward within what was determined at this meeting. I personally don\’t feel it is a true gauge of what the community needs overall, but most importantly of what individuals living with autism desire. That is not for us, me as a parent as well, to decide.
Carolyn Gammicchia
Parent of an 18 year-old young man with ASD
Thank you so much for doing this. The thought of what will happen to my daughter after we die is what haunts my thoughts whenever I wake up in the middle of the night. We all need to pool resources of time, energy, and funds to figure out how to make sure our kids are safe when we\’re gone.
On one hand I am encouraged that there is an effort to provide solutions down the road. I couldn\’t be happier about it actually.
And I love the idea about the National Autism Lottery, but aren\’t we already in one? Isn\’t that what the vaccines are all about, some get autism, some don\’t. Come get your shots, take your chances!
The other hand, I was wondering what sort of talk was there about the involvement of private interests? Seems many of the communities needed will be developed faster if the private developers of assisted living facilities etc got involved and were to able to see the future market and for us to partner with them in the design and lobbying for financing and public support.
What would the new health plan in front of the Senate offer in ways of helping to cover the costs? I know what Blue Cross Blue Shield would offer, nuthing!
i read recently that these costs could run anywhere from $40,000 to $130,000 per year per person.
As is true with people of a wide variety of disabilities, the best money spent is services that enable people to be as independent as possible, rather than waiting for them to fail and then providing a higher (and more costly) level of care taking. Nice posting, Alison.
Carolyn said, \”It didn’t feel like the folks voting were doing so based on quality of life issues, nor providing for more choice for individuals with autism. What it felt like was what was best to meet the needs of care providers and their fears as well as how to best support providers.\”
Truer words seldom get spoken. Much of what I have seen transpire in my area when the DHHR or Legislature works to \”improve service offerings\” has been to make things better for the case management agencies, with no regard to whether the clients (our children, siblings and other loved ones) actually get any services that are meaningful.
\’Bout time we took control of this situation back from the bureaucrats and for-profit non-profit agencies.
Dad Fourkids
parent of a 15 yo autistic son, non-verbal
Thanks for the boxes for shoebox tasks Alison, as well as for your wonderful blog! I love reading this blog every week, and think it provides such a wonderful resource and support for parents. You go girl! <3
Don\’t lose sight of need for services
Times have changed. I can remember when doctors were apprehensive about giving a diagnosis and support groups were new. Now different disabilities are huddling up under the autism umbrella and the support groups have members in the hundreds.
I have heard autism called an epidemic. The scientists are trying to learn the causes. We try to blame our toxic environments and immunizations as we delve deeper into understanding brain sizes, chromosomes and inheritance. It is truly wonderful that we can take pictures of brains, analyze DNA and study growth patterns. So many are raising funds for research to find the answer why. More celebrities come forward as the big \”A\” seeps into the lives of their relatives and friends.
My mind often wanders past where the answer is. Once the masterminds come to a conclusion and we can understand the reasons, we would still find ourselves with loved ones that are affected.
I fear that people are so busy trying to find the answer that we may lose sight of the services that are needed right now. Some parents have not had success with early intervention or their children have multiple disabilities. These parents soon will have autistic adults and may not have the resources or stamina to care for them.
The waiting lists for group homes and care centers continue to grow. The crisis centers needed for adolescents and young adults are still too few and far between. Our police and first responders to the wanderings and situations that require intervention are just now being trained about autism. The budget for our state\’s mental health department seems to be a runaway train. We need to focus more on the present.
I like the idea that funding is being sought for research. It helps in educating others and raising awareness. However, I would love to know that there was a bit more attention on what is needed in the near future for services and care.
I\’d post something cogent, but when I really think about adults services I become a quavering, incoherent mess. Lord…
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