The time is NOW–please give the IACC input on the Strategic Plan

6 Jul

As many readers here may recall, I spent a few years as a public member to the Interagency Autism Coordinating Committee (IACC). The IACC is mandated by the same law that commits the government to funding autism research. The most important thing the IACC does is draft the Strategic Plan. This is the how the autism communities tell the government and other funding agencies what research projects we want performed. That Plan is up for a major revision. Something that hasn’t happened since before I was on the IACC. Now is when the real work of the IACC is going to happen.

And they want your feedback. They need your feedback. There is a website open now to submit feedback: Request for Public Comments – 2016 IACC Strategic Plan. I list the questions below so you can prepare–but go to that website and give feedback. Do it now. Don’t put it off and possibly miss the chance to give feedback.

Maybe you want to give feedback on only one topic. Great. Maybe you want to give a lot of feedback. Great. But do it. Do it now.

Why?

Do you want a major focus on, say, supporting high support adults? Early intervention? Better education supports and strategies for older students?

We aren’t talking small amounts of money. Here’s a figure from the IACC’s Portfolio Analysis from 2012. That’s over $300,000,000.00 spent in one year. Three hundred million plus dollars.

Autism Expenses 2012

Is that the breakdown you want to see? Is that what will make a difference in your life, or the life of someone you care about?

It isn’t what I want or need. Research takes time to impact real life. I want autistic adults–especially those with high support needs–to have a better life. I’d like it NOW, but I need it by the time my kid ages out of school. In the pie chart above, “lifespan issues” account for 1% of the total funding. Lifespan issues is the term for issues involving adults.

1%.

That has to change. And I’ll give that feedback, and more.

You may have other areas, or other specific projects you want to see advances in. Let the IACC know. Let them know NOW. Request for Public Comments – 2016 IACC Strategic Plan

Here are the questions you will see on the website.

Question 1: When Should I Be Concerned? (Diagnosis and Screening)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 1. Topics include: diagnosis and screening tools, early signs, symptoms, and biomarkers, identification of subgroups, disparities in diagnosis

Question 2: How can I understand what is happening? (Biology of ASD)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 2. Topics include: molecular biology and neuroscience, developmental biology, cognitive and behavioral biology, genetic syndromes related to ASD, sex differences, immune and metabolic aspects, and co-occurring conditions in ASD

Question 3: What Caused This to Happen and Can it be Prevented? (Risk Factors)

Please identify what you cosnider the most important priorities and gaps in research, services and policy for Question 3. Topics include: genetic and environmental risk factors, gene-environment interactions, and the potential role of epigentics and the microbiome

Question 4: How can I understand what is happeing? (Treatments and Interventions)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 4. Topics include: behavioral, medical/pharmacologic, educational, techonology-based, and complementary/integrative interventions.

Question 5. Where can I turn for services? (Services)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 5. Topics include: service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion.

Question 6. What does the future hold, especially for adults? (Lifespan Issues).

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 6. Topics include: health and quality of life across the lifespan, aging, transition, and adult services, including eduction, vocational training, employment, housing, financial planning and community integration.

Question 7. What other infrastructure and surveillance needs must be met? (Lifespan Issues)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 7. Topics include: research infrastructure needs, ASD surveillance research, research workforce development, dissemination of research information, and strengthening collaboration.

Go to the website. Request for Public Comments – 2016 IACC Strategic Plan. Give them feedback. Did I mention you should do it now and not wait?


By Matt Carey

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7 Responses to “The time is NOW–please give the IACC input on the Strategic Plan”

  1. lizditz July 7, 2016 at 19:56 #

    thank you Matt. I’ve shared as widely as I can, on FB and elsewhere.

  2. mycroftviii July 8, 2016 at 18:27 #

    Primarily we need to stop being treated as diseased or broken.
    The disease paradigm does the most harm. Just as it used to do with the lgtb community. Homosexuality stopped being listed as a mental disorder in the 70’s and it’s time to do the same for aautism.

    • Judith July 11, 2016 at 01:32 #

      who treats you as diseased or broken? My son has a disability that must be addressed. He needs acceptance and help to navigate the rest of his life. Please feel yourself lucky in that you can understand the word paradigm let alone type it on the computer. Yet, he never complains but holds his head up and walks with dignity. An outstanding human being.

      • Sullivan (Matt Carey) July 11, 2016 at 05:35 #

        who treats you as diseased or broken?

        Del Bigtree for one. He has recently likened parenting an autistic child to owning a Doberman or “exotic chimpanzee”

        But people more interested in attacking vaccines than improving the lives of autistics just love him.

        You people lost your way.

      • Judith July 11, 2016 at 17:10 #

        Whoever Del Bigtree is he is a monster with no respect for humanity. Don’t count me in as “you people” I am not blaming vaccines for a disability that has been with us since time began. I just want help for the most vulnerable in our society. Hard workers who just need opportunities available.

    • Judith July 11, 2016 at 18:22 #

      The person who wrote about “paradigm” seems not to have a problem with communication. He is advocating for himself just fine. I agree that there should be no discrimination and autism is not an epidemic disease although people with diseases and mental disorders may be insulted because of the lack of compassion. Some autisms are just a variation of human nature, therefore, no help is needed just acceptance.

  3. Mikaela Teeple July 9, 2016 at 22:40 #

    My 5 year old has started a program with, GEM State in Nampa Idaho. They teach them how to live their own lives and much much more. In just one week, I have seen huge changes. He was upset to not be able to go for the weekend, he enjoys it so much! They have been his advocate when no one else has. We have been to specialist after specialist with zero results. They take a very different approach and words can not begin to express my gratitude for their help and love for my son! If anyone program deserves funding, it’s them. Please, help them with anything they may need so more disabled children get the love and compassion these workers offer at, GEM State!

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