Why the IACC Doesn’t Care About Your Opinion: A More Hopeful Solution Exists For Our Community

October 26, 2016

lisa-wiederlight-safeminds-executive-director-300x240

Since I joined SafeMinds in Spring 2015, I have taken the opportunity to represent the organization at every quarterly meeting of the Interagency Autism Coordinating Committee (IACC). I have always intended to educate the members and the people watching via the Internet about the most pressing problems the autism community faces, and to provide them with real-life public policy recommendations for making change.

My remarks have focused on:

The inconsistent data collection efforts of the CDC in establishing autism prevalence estimates and its effect on creating appropriate public policies and programs that address the autism crisis; and

The creation of four workgroups, specifically,
1) Environmental factors that may underlie the rise in autism prevalence
2) Co-occurring conditions with autism
3) Autism and wandering
4) Caregiver support

Last week, when I indicated my intent to provide oral comments to the Committee at their October 26th meeting in Bethesda, I received the following message:

Dear Ms. Wiederlight,

Under our new policy, any given individual may only present at the oral public comment session of an IACC once per calendar year to enable different individuals the opportunity to comment without going over the time scheduled for the session.  At the last committee meeting, the committee expressed concern about the sessions running out of time for thoughtful consideration of written comments, and this is the solution we have developed to enable the sessions to stay on time.  Providing time limits for each presentation unfortunately was not effective.

If SafeMinds wants to name another individual who has not spoken at an IACC meeting in 2016 to provide public comments on its behalf at the October 26 meeting, we can accept that request.  And/or SafeMinds is also welcome to provide a written comment.

Sincerely,

The Office of Autism Research Coordination

If this action on the part of the IACC concerns you, please call or message them to let them know that all of our voices should be heard at meetings. Not just our written testimony, which has no guarantee of being read. The IACC’s phone number is (301) 451-9436, and the email is IACCpublicinquiries@mail.nih.gov.

Here’s my thought. I worked at the White House Office of National Drug Control Policy earlier in my career as a public affairs specialist. I helped formulate the 1997 National Drug Control Strategy, and I organized and staffed too-many-to-count public meetings and press conferences. I know there were many stakeholder meetings as the Office developed the Strategy.

If you want public discourse and care about the many diverse opinions on your issue, you not only welcome it, you seek it out. If someone is speaking too long and this affects your meeting time, you let them know politely that this is the case and that the microphone will turn off in 30 seconds. Then you ask them politely that you hope they understand and that they can submit the rest of their testimony in writing. After that 30 seconds, you turn off the microphone. You manage the meeting, not your stakeholders.

But this is the IACC.

Yes, this is the same IACC about which the U.S. Government Accounting Office (GAO) reported in 2013 whose “members provided mixed views on the usefulness of the IACC’s meetings, strategic plan, and portfolio analysis in aiding coordination and monitoring.” The report continued, “Shortcomings in the data the IACC used for its portfolio analysis limited its ability to coordinate HHS autism activities and monitor federal autism activities–as required by the Combating Autism Act of 2006 (CAA).” For example, GAO found that the data used by the IACC was “outdated, not tracked over time, inconsistent, and incomplete. These weaknesses limited the IACC’s ability to monitor its progress on its coordination and monitoring efforts–which, in prior work, GAO established as a best practice for inter-agency collaboration, as well as a federal internal control standard. In addition, these weaknesses limited agencies’ ability to use these data to identify coordination opportunities and avoid the potential for unnecessary duplication.”

Potential for unnecessary duplication. Shortcomings in the data the IACC used. Data that was outdated, not tracked over time. Inconsistent. Incomplete. Of course, the IACC and the GAO have gone back and forth on this report. But the report, just like the IACC’s Strategic Research Report, is in black and white.

Traveler with backpack walking forward alone at sunset. Stock photo.

Things have to change for our community and we need to work together to get things done. Over a million people have been diagnosed with autism since the year 2000. More children have been diagnosed since the year 2000 than there are residents living in Baltimore, or Jacksonville, FL, or Las Vegas, or San Francisco, or Austin, Texas.

Research estimates that about 70 percent of people with autism experience gastrointestinal issues. Over 50 percent exhibit aggression toward caregivers. Up to 49 percent wander from safe environments. Approximately 30 percent have a seizure disorder. Recent research has shown that between 30 and 50 percent of people with autism have considered suicide. This growing population is reaching adulthood and most are either underemployed or unemployed, and socially isolated.

Rising costs, and no reduction in prevalence on the horizon.

In 2015, autism cost our country $268 billion. If the rise in autism prevalence continues unabated, it will cost our country $461 billion in 10 years. Who will pay for this? Our children and their children. While they are caring for their siblings with autism.

The time for action is now.

The members of the IACC can talk about studies all they want, but we need researched-based policies and programs that are focused on measurable outcomes. We won’t get that from the IACC because it wasn’t designed to deliver them. Its primary mission, according to its beautiful new website, is to “provide advice to the Secretary of Health and Human Services on matters concerning autism spectrum disorder and to facilitate the efficient and effective exchange of information on autism activities among the member agencies in order to enhance coordination of autism-related programs and activities. The Committee will assist in increasing public understanding of the member agencies’ activities, programs, policies and research, and will serve as a public forum for discussion of issues related to autism spectrum disorder.”

Though the IACC has not found any new treatments or identified any causes of autism in its over 10 years of operation, and is now choosing not to be a public forum for discussion of issues related to autism spectrum disorders, its annual operating budget is $1,383,000. We could sure use that money to fund Kevin and Avonte’s Law, H.R. 4919, but I digress….

It is time for a new paradigm, and a new way to address the urgency of autism in our government. One that is responsive and inclusive of all of the autism community. One that is transparent in its decision making. And one that is accountable to its stakeholders, including the taxpayers and Congress, on an annual basis, for its performance.

SafeMinds is working to make this happen, and needs your help to ensure these efforts continue. Please consider sending us a tax-deductible donation today, because not only is 1 in 68 “not great,” it’s plainly and simply unacceptable. Thank you for your support.