They want your input. The official request for information is here.

It boils down to this: send an email to the iacc@mail.nih.gov. The draft of the Strategic Plan is here for you to read.

It looks like a a good document, and shows the care that the IACC put into it. The autism communities tend to be focused on what is not going right that sometimes we forget that when a government agency does a good job, it’s worth letting them know. But, if there are things you would like to have included, let them know.

If you are pressed for time, here’s a hint–you don’t even have to read the Strategic Plan. Just let them know what subjects you think are important.

Also, consider letting them know if you think any subject should not be mentioned. For example, vaccines are mentioned in a “monitor the literature mode”. Of course they are monitoring the literature for everything having to do with autism. The inclusion of this statement in the Plan looks to be more of a political statement than a research-driven statement.

This has already been blogged by ASAN of Southwest Ohio, and LeftBrainRightBrain.

As part of the process, they have published a “Request for Input“, or RFI. They want comments on the draft version of the Strategic Plan.

This has already been discussed at Neurdiversity, LeftBrainRightBrain, and Action for Autism.

This is different than the recent RFI from the services subcommittee, which we discussed and AutismVox has discussed.

Basically, send an email to iacc@mail.nih.gov. Put “NOT-MH-08-021″ in the subject line. Tell them what you think of the Strategic Plan. This document will have an impact on the future of research spending withing agencies like the NIH, NIMH and CDC.

The RFI notes:

Please organize your comments by the sections of the draft Strategic Plan:

Introductory Material (including the Introduction, Vision Statement, Mission Statement, Core Values and Cross-Cutting Themes)
I: When Should I Be Concerned?
II: How Can I Understand What Is Happening?
III: What Caused This To Happen And Can This Be Prevented?
IV: Which Treatments And Interventions Will Help?
V: Where Can I Turn For Services?
VI: What Does The Future Hold?
Development Process for the IACC Strategic Plan for Autism Spectrum Disorder Research
References

You may not have the time to read the entire Strategic Plan and put together comments according to the structure. Look for the parts that interest you most. Are you interested in children’s issues? Early Interventions? Adult issues?

How about general concerns like–”please stay with the strengths of the NIH and NIMH and use the peer-review process to determine projects which are likely to have a good likelyhood of success”.

Now is the time. Don’t put this off. Make your voices heard.

Follow the link for more details, but here are some segments worth noting:

Information Requested

The IACC is interested in receiving your input and ideas about high-priority questions and issues surrounding services and supports to people with ASD of all ages, and specific research initiatives on ASD services and supports. For example, information is sought in the following areas that impact services and supports across the lifespan: education services, health and medical services (including dental), housing, transitions, employment, community inclusion, safety, older adults, finances, guardianship, and estate planning.

And,

Please send responses to iaccservices@mail.nih.gov no later than September 19, 2008. Please limit your response to one page and mark with this RFI identifier, NOT-MH-08-016, in the subject line. The responses received through this RFI will be collated, summarized, and provided to the IACC Services Subcommittee and the public. Any proprietary information should be so marked. The collected information will be analyzed and may appear in reports. Although the IACC Services Subcommittee will try to protect against the release of identifying information there is no guarantee of confidentiality.

Let your voice be heard.

If you are wondering, they are very easy to “attend”. You can either call in to a listen-only line or you can also watch the presentations they are working on. For this meeting, the presentation wasn’t as useful since they weren’t changing foils very often. Listener’s got most of the gist without the slides.

That said, I wasn’t able to listen to the whole meeting, but here are some impressions of what I did hear.

The implementation group is charged with “implementing” the strategic plan. No surprises there. They are not supposed to rewrite or reinterpret the strategic plan. Most of the meeting was really centered on “How much will it cost to meet this goal”. People could say things like, “We think this could be a supplemental funding to an existing project”. Such funding would make the research start sooner and, presumably, be cheaper.

Estimates for the costs had an amazingly large range. As in, one group would estimate at, say, $2M, and another group would say, $25M. A lot has to do with assumptions. Starting an entirely new project is more expensive than using existing research teams with existing cohorts, for example.

Some of the discussion crossed the line into remolding the strategic plan, but the chair was pretty good at getting things back on track. By lunch, though, they were way behind schedule.

One note: I was very impressed with Wolf Dunaway. He is an autistic adult. Budgeting is not his area of expertise (as far as I can tell). But, he was giving really good suggestions throughout.

Follow the link above for a description of the IACC, but it is basically what it sounds like: a committee to coordinate the government’s research efforts in autism.

Copied below is the email discussing this. This is exactly the sort of thing that I’d like to point out, but it doesn’t belong on the main site. Hence, the reason I added the blog.

The meeting is for the “Strategic Planning Implementation Workgroup”. A little explanation: There’s the IACC, which I think of as the “main committee”. Then, there has been a “working group” on creating a “strategic plan” for the IACC. This is the document that, when finalized, will explain what the IACC has agreed is the pathway for research. The group that is meeting on the 8th is the workgroup that will discuss how to actually implement the strategic plan. My expectation: a pretty dull meeting discussing details of how budgets should be calculated and other such matters. Doesn’t mean I won’t listen in as much as I can.

There will be a meeting of the Interagency Autism Coordinating Committee (IACC) Strategic Planning Implementation Workgroup on August 8, 2008 from 11:00 a.m. to 3:00 p.m. EDT.  The purpose of the meeting is to discuss budgetary requirements for the IACC Strategic Plan for Autism Spectrum Disorders (ASD) Research.  Workgroup findings will be forwarded to the IACC for consideration and discussion at the next committee meeting on November 21, 2008.

Audio of this workgroup meeting will be accessible to the public via a teleconference phone link, and web-based access to information will be displayed at the meeting via computer/projector.  To access the meeting, please visit the following web address:

https://www1.gotomeeting.com/register/250792981

The call-in phone number is: (888) 455-2920.  The pass-code necessary to access the meeting is 3857872.

In-person attendance at the meeting will be limited due to space available at the Neuroscience Center, Conference Room A, 6001 Executive Boulevard, Rockville, MD 20892.

The contact person for this meeting is:

Azik Schwechter, Ph.D.

National Institute of Mental Health, NIH

6001 Executive Boulevard, Room 8203a, MSC 9657 Rockville, MD 20852

(301) 443-7613

schwechtera@mail.nih.gov

Please Note: The meeting will be open to the public through a conference call phone number and a web-based presentation tool on the Internet. Individuals who participate using these electronic services and need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request prior to the meeting.

Members of the public who participate using the conference call phone number will be able to listen to the meeting but will not be heard. There may be an opportunity for members of the public to submit written comments during the workgroup meeting through the web presentation tool. Submitted comments will be reviewed after the meeting. If you experience any technical problems with the conference call-in phone number or web presentation tool, please contact GoToWebinar at (800) 263-6317.

To attend this meeting, the following computing capabilities are required: A) Internet Explorer 5.0 or later, Netscape Navigator 6.0 or later or Mozilla Firefox 1.0 or later; B) Windows® 2000, XP Home, XP Pro, 2003 Server or Vista; C) Stable 56k, cable modem, ISDN, DSL or better Internet connection; D) Minimum of Pentium 400 with 256 MB of RAM (Recommended); E) Java Virtual Machine enabled (Recommended).