What the IACC must consider

By Lisa Ackerman

The Interagency Autism Coordinating Committee (IACC) was formed from the Combating Autism Act (CAA) of 2006 with one mission in mind:   Coordinate to find the cause and assist with initiatives that will help families living with autism. As you may notice, I have taken the liberty to summarize their mission statement. You may read the Committee’s full mission statement at the IACC website (1.)

Since the IACC’s inception, I have been hard pressed to find an accomplishment that demonstrates the value of the $700,000 budget spent. As some of you may recall, I wrote about this issue earlier this year (2.)  I welcome the opportunity to speak to anyone on the IACC to discuss my concerns.

My purpose in writing this blog is to help with planning the next steps for the IACC. It is my objective to communicate urgent needs while echoing the sentiments of others, and include the following requests:

  • Based on CDC autism estimates, declare autism an epidemic and public emergency. We need to treat autism with the urgency it warrants: 1 in 88 children are living with autism in the United States.
  • Define and collect a true census of individuals affected by autism. It is important to indicate that four year old estimates based on surveys do not work. Real numbers and details such as age groupings are urgently needed. (3.)
  • Consider a more diverse board at the IACC to include some of the world’s researchers in cause and innovative treatment such as:  Dr. Martha Herbert, Dr. Jill James, Dr. Richard Frye, and Dr. Dan Rossignol. It is my opinion that the current IACC board lacks in ground-breaking research and medical treatments happening today. Adding more experts to the IACC board would help further the efforts in a more positive direction.
  • Collaborate with families via support groups in indentifying needs for those living with the condition today.
  • Outside traditional therapies, medical treatments are helping individuals with autism live healthier. Based on new research, co-morbid medical issues do exist with autism. Where are the initiatives addressing these concerns to define answers? (4.)
  • Identify a task force to address the current and future needs of adults living with autism.
  • Prioritize and evaluate all possible environmental causes of autism.
  • Operate with a sense of urgency in your strategic plan. We cannot waste another moment. We must drive for answers.

It seems most families I work with don’t know of the IACC’s existence or purpose.  In the past six years, not one family shared with me that the IACC has improved the quality of their life.  It appears that based on the IACC’s annual budget and meetings held, there should be more to show concerning their accomplishments in addressing the many issues regarding autism.

The annual cost of autism is estimated over $137 billion annually. (5.)  We cannot afford to keep the status quo, families are drowning and in need of urgent support.

The IACC will be meeting on Monday, October 29th to update their strategic plan. I would like to encourage feedback from the autism community. Please communicate what your family’s needs are.  You may do so directly via a written public comment at the committee meeting next week or you may do so here, by replying to this blog.  What does the IACC need to do?

Resources

  1. About the IACC: http://iacc.hhs.gov/about/
  2. IACC Reconvenes: http://www.tacanow.org/blog/the-iacc-reconvenes/
  3. What constitutes an emergency: http://www.tacanow.org/blog/what-constitutes-an-emergency/
  4. Many children with autism have other health problems: http://health.usnews.com/health-news/news/articles/2012/09/25/many-children-with-autism-have-other-health-problems-study-says
  5. The annual cost of Autism http://www.tacanow.org/blog/the-annual-cost-of-autism/

Side note:
Special thanks to IACC Committee member John Robison for already sharing his feedback and desire to collaborate.  I truly appreciate his input and collaboration.

15 Comments Add yours

  1. Dawn Loughborough says:

    Lisa – excellent points. I will be there M-T at IACC.
    Dawn

  2. Becky Rubens says:

    The IACC is a joke trying to stall and cover for big pharma!! They need to disband and get some real doctors and reps on board!

  3. Sylvia Sanchez-Abreu says:

    I totally agree Lisa, if they have tested thousands of children and have found that they have genetic abnormalities in methylation and low glutathione, why aren’t DAN type doctors covered under insurances and supplements should be covered because they are a medical necessity, why don;t pediatrician do diagnostic screening for metabollic causes. The doctors doing the treatments and getting results need to come out of their cubbies and bring the information to the masses, make the AMA listen.

  4. Spela Falatov says:

    This is a great effort. I wanted to say that for all of us living in different countries, this serves as an example we can advocate for. We are light years behind your accomplishments.

    Many thanks for the inspiration. Regards, Spela

    Sent from my iPad

  5. Linda Betzold says:

    Well said, Lisa. I agree whole heartedly. My son has autism, okay, whatever. What is more important is that he has documented and diagnosed inflammatory bowel disease, GERD, immune deficiency, growth hormone deficiency, chronic migraines, and mitochondrial DNA depletion syndrome. We have done genetic testing, and my son has no genetic reason for the mitochondrial DNA depletion syndrome. So many kids with autism have these diagnoses and more. Why? Is this of no interested to the IACC??? I beg them to bring a more diverse group of professionals to the table. Please bring in physicians who better understand what is happening to my son and many like him. The three physicians Lisa mentions are stellar. I would welcome their presence on the IACC. Autism is medical. We call is a psychiatric disorder, but it is a complex constellation of medical issues. We look at the outside, neurological manifestation of those medical issues and call it “autism.” But we must look deeper. These children are very ill. They deserve better from us. The IACC can do better. Much better.

  6. Silvia Martinez says:

    Doctors working together along with families as well. Especially with families who have more than one child who hhas autism. Providing support for the familes in the communities and schools and for the family working together as partners. We lack so much of this.

  7. Jill Grant says:

    I agree with the above comments regarding bringing in more doctors who are doing the cutting edge biomedical treatments and research. The IACC needs to recognize that autism is more than just a psychiatric disorder but a whole body medical disorder. My son has comorbid inflammatory bowel disease and heavy metal toxicity which we are treating and our family has spent thousands of dollars without any extra support because we don’t qualify for any assistance. My husband and I have good jobs but with the rising cost of gas, food, etc it is difficult to keep up.

    1. Nikki Roxby says:

      Thank you Lisa for having the courage to start an organization that has made such a tremendous impact on the lives of thousands of families. When my son was diagnosed I was shocked that the traditional medical community was unable to help my son and that no one wanted to pay for his treatment, including our insurance which actually has an autism exclusion in our policy. We have spent out of pocket over $100,000 over the last 2 years for doctor appointments, labs, medical treatment and therapies. The regional center helped pay for services until my son aged out at 3 years old. Then we had to pay for an attorney and fight the school district for appropriate services. My son has improved because of the support and mentorship we received from TACA, because of the Dan doctors Lisa mentioned, all of whom took our concerns seriously and used labs to determine a multi system disorder that included mitochondrial dysfunction, cerebral folate deficiency, dysbiosis and complex partial seizures. My son is getting better because of TACA, our Dan doctors and because we sacrificed our savings to do everything we needed to do to get him healthy. The problem is most of us are going into debt and we have to keep trying to come up with a way to pay for everything. The IACC should be funding the research that these great doctors and researchers Rossignol, James, Frye and have them on their board consulting with them. They are making a difference for our children.

  8. imbndvs says:

    We have a son who loves school and is doing well in his ABA and IBI classes but has behaviors that severely impact his home life and non-structured free time including decreased social awareness, elopement risk, rigidity to routine, speech delays that impact his communication with others/peers, aggressiveness and low frustration thresholds, and repetitive hand and head movements. My insurance is self-funded and is denying in-home ABA to help with social impairments, and RCOC is telling us that due to acceptable academic performance, he is “not disabled enough” to receive their services. Fee-based preschools want us to provide a 1:1 for him due to his social behaviors and because he is not 100% potty trained at 4 years, which we can’t afford on one income. Yet, I’ve had to stop working to be full-time care giver since he’s only in school 2-3 hours a day, so without preschool I can’t go back to work. There needs to be options for services for “high functioning” autistic children like my son whom are falling through the cracks and putting emotional, financial, and physical burdens on their family…. Not that my son is any sort of burden, the lack of available help and lack of carry-over behavior support offered by the school district are!!!

  9. Kim Morton says:

    Would you like to SAVE LIVES?!!!! This is a national emergency. Lisa is presenting a plan with ALL the appropriate steps to spare more children from this medical nightmare. There is not a second to spare!

  10. Kim says:

    My son is 15 years old. He is in the special education program in the public school system in my area (it costs $17,000 per year to send him to the closest school that specializes in the education of autistic children). He has the ability to perform better and achieve more in school, but lack of enthusiam on the part of the special education department has resulted in him just being passed through the grades. I buy educational software for the computer for him to use at home, but I don’t think this is a substitute for a formal education. I would like for my son to really graduate from high school and attend college. During annual ARD meetings, the ARD committee acts as though I’m speaking a different language when I suggest he could perform better and do more. They treat the meeting as a formality instead of a forum for us to define and direct his educational goals. The special education department as a whole is simply a beast that compiles stacks and stacks of paper outlining what they believe my child cannot do. They are a hindrance and a stumbling block for special education children, instead of the special assistance and help that they were initially designed to be. Maybe the IACC could provide tuition for me to send my child to a school where he could really be eduated OR provide assistance to small town school districts so they could better educate autistic children.

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