IACC Meeting, November 21, 2008: A Summary
If you weren’t able to listen in to yesterday’s meeting of the IACC meeting, this is a brief summary:
In the morning, the committee members reviewed the draft of the Strategic Plan and “wordsmithed” various additions and revisions suggested by various members of the IACC. These revisions included:
• the use of “may” or “can” in regard to describing the effects of Early Intervention
• mention of “comorbid” and “co-occurring” (medical) conditions
• a lengthy discussion about vaccines and about what science and evidence there is to refute or support a link (it was decided to include the statement “the weight of the available evidence does not support a link between autism and vaccines”—more details about this are below)
Much more of the draft of the Strategic Plan remains to be reviewed and there was talk about the committee reconvening in December to finish reviewing the revisions.
Paula Durbin-Westby of the Autistic Self-Advocacy Network (ASAN) gave a well-received presentation on the need for ethics in autism research. There’s a need for research on the strengths of autistic individuals, she said, and on the positive aspects of difference, and it’s necessary that autistic individuals be fully represented on the IACC.
In the afternoon, there were detailed presentations on Medicare and Medicaid and on waivers (prompting the Chair of the IACC to note that these systems are as or even more complex that various topics in biochemistry); on the pressing need to focus on adult issues (will the employment rate for autistic persons be better in the future?, Dr. Cathy Pratt asked); on the waivers and other programs in Pennsylvania’s Bureau of Autism Services; and on the Autism Spectrum Disorder Pilot Program in Connecticut.
Pamela Beck spoke about her 24-year-old son Brandon Beck and the self-direction model. The Executive Directors of two agencies providing services and supports for adults in California (Dr. Jeffrey L. Strully of Jay Nolan Community Services) and in Maryland (Ms. Emily Homer of VOCA of Maryland D.C.) described the realities and successes of their programs, and of the intense need for staff: What are traits of staff who are really good at supporting people?
After comments from six members of the public, the meeting was adjourned.
There’s more to note—-will end for now with a quote from Lee Grossman, President and CEO of the Autism Society of America:
Tags: asd, asperger, autism, autism blog, childhood, disabilities, disabilities blog, disability, early intervention, Education, employment, future, Health, IACC, interagency autism coordinating committee, jobs, medicaid, medicare, Vaccines, waiver, Work“”it’s what we hear the community is asking the most for—lifespan services.”"
Related Stories
POSTED IN: Adulthood, Education, Living Arrangements, Science, Vaccines, Work
12 opinions for IACC Meeting, November 21, 2008: A Summary
Kev
Nov 22, 2008 at 7:19 am
Thank you Paula, thank you whomever shut Lyn up and thank you Kristina for the report :)
Kristina Chew, PhD
Nov 22, 2008 at 10:35 am
This is the set-up for the IACC meeting: It was held in a rotunda, with the committee members seated at long tables in the middle and two screens with the draft Strategic Plan displayed on screens (in a really small font—I had to move to sit right in front of the screens and the I had to really focus to read it), and the audience on the three sides.
The review of revisions to the draft of the Strategic Plan lingered over the introduction, about “what we know” about the causes of autism. Lyn Redwood had four additions to make in reference to a mention of vaccines. After reading out these comments, the committee was at first silent. The Dr. Edwin Trevathan, Director of the National Center on Birth Defects and Developmental Disabilities (at the CDC), asked if so much detail (about vaccines) was needed in the introduction. There was a vote about changing the language and enough (not all) of the members raised their hands about changing it.
Dr. Insel said:
And he noted that this is an area in which we are not going to find common ground, and that people have been imploring that the committee not get stuck in this. Of the vaccine and autism issue he noted,
Reed said that there is research [regarding an autism-vaccine link], that there are studies, and that the research is just not cited. She was critical large epidemiological studies.
After discussion, the committee came up with this language:
Redwood critiqued the wrd “weight” and said more current research has found links (and said what if a list was added; it was noted that such a list had been supplied to the committee). A committee member (a federal member—have to check on his last name, first name Walter] pointed out that whenever you talk about studies having “weight,” there are always studies [some scientific studies] that do not agree. So the language was added that “some people remain concerned that ASD is caused by vaccinations,” in specific subpopulations with susceptibility due to weakened immune system or underlying mitochondrial disorder.
After that was voted on, and it was agreed to add the phrase about the “weight of the available evidence does not support a link between autism and vaccines,” Dr. Insel acknowledged that there is a really fundamental disagreement on this issue and that we’re not going to be able to come to an agreement on it.
Then it was time to talk about services.
Phil Schwarz
Nov 23, 2008 at 1:25 am
Kristina, thanks for the time and effort you spent to attend and be read (if not heard) at this IACC meeting.
I am glad to hear that they moved on from the endless back-and-forth about vaccines, to services.
Lee Grossman talked the talk — “lifespan services”; I hope ASA puts more energy and bandwidth into walking that particular walk. It is an area in which ASA can, if it’s smart, rise above the squabbling and differentiate itself from the other big-money autism organizations.
As the vice-president of a (not-quite-yet-as-big-money) regional autism organization on the forefront of young-adult and adult issues, the Asperger’s Association of New England, I know that the demand for lifespan services in key areas such as housing, employment, postsecondary and vocational education, personal care and household management, and living in the community as a citizen and consumer, is burgeoning.
We can argue until the cows come home and endorse Temple Grandin’s professional work, as to what the causes are, but I think all sides in the causes-and-cures debate agree that there is by now a large identified population of autistic children who will be autistic adults in the next decades.
More of the “autism community” needs to join AANE and other forward-looking organizations in the effort to secure and establish much needed young-adult and adult services.
I am very glad to hear that Paula Durbin-Westby of the Autistic Self-Advocacy Network got to speak, and made the points she made. I first met Paula at Autreat 2007 and have been impressed with her work since then. It is vitally important that the IACC hear from autistic self-advocates: nothing about us, without us.
I’m also glad to hear that Jeff Strully got to speak; Jeff is a former board member of AutCom, the Autism National Committee, and a staunch ally of access to communication and civil and human rights for autistic people.
Regan
Nov 23, 2008 at 8:31 am
Thanks for the summary Kristina!
Even though there is the listing of agenda and minutes on the
IACC Meetings & Events page
It’s unfortunate that the presenters’ slides, at least as far as I saw, do not seem to be archived with the minutes for the public. The sets given in this particular meeting were very interesting and, I thought, would be useful for reference.
Kristina Chew, PhD
Nov 23, 2008 at 2:39 pm
I think Paula will be posting hers an ASAN’s website; I hope!
Most of what was shown was the drafts of the SP, but they were, again, in very small font and hard to read.
Paula
Nov 23, 2008 at 7:01 pm
I will be posting it as soon as I get a chance. I’ve been hanging out with my son, working on an index, playing the organ and directing the choir, and I think there was something else…oh yeah, an AASPIRE meeting online. I have to correct a few things to reflect what I actually said, then I can post it.
There’s a comment I want to make to Phil but I’m not being able to find the right words, but it is about something you said at Autreat 07 which helped me be able to access more language, in what is likely a consciously “autistic” way of accessing it, but I can’t explain it very well! Anyway, I think about what you said all the time (the part that I remember), and it has led me to be able to speak more (quantity) and more effectively (quality). The quantity thing is interesting because I am finding that I seem to have a mild speech “impediment” (? not sure what to call it) that never showed up before, probably because I mostly spoke in short phrases and not long ones, and it is harder to sustain non-stuttering in a longer sentence, and there’s a thing I have been doing where I get stuck on the first consonant and then the rest of the word comes later. Not sure why but my theory is just that I talk more. Or else I am tired!
Kristina Chew, PhD
Nov 23, 2008 at 8:08 pm
@Paula,
I really think you helped to turn the tone of the meeting—-away from ploddingly going over every last detail of working in the Strategic Plan (esp. when there seemed to be a need to redefine autism as relating to various medical conditions). And unlike pretty much everyone else, you stayed exactly within the time allotted and more than made your point.
Paula
Nov 23, 2008 at 10:45 pm
I was the only one using the visual Time Timer! :) I so much wanted to pass it around to other people to use.
The Real Problem with McDonalds
Nov 25, 2008 at 6:09 pm
[...] Homer of VOCA of Maryland D.C. made this point at last week’s IACC meeting and it sobered the atmosphere in the room up. She noted that, if Americans won’t take these [...]
28-year-old woman’s death under investigation
Nov 26, 2008 at 6:02 pm
[...] where Charlie will live as an adult since hearing about the services offered in different states at last Friday’s IACC meeting. The pressing, pressing, pressing need for staff with appropriate training, for facilities, and for [...]
Who’s On the Board?
Dec 13, 2008 at 4:48 am
[...] on its roster, and Paula Durbin-Westby, a member of ASAN, was asked to present at the November 21st IACC meeting (and you can view her presentation here). The Autism Society of America has a panel of people on [...]
Autism Vox 2008 in Review: August-December
Jan 1, 2009 at 4:56 am
[...] in New Jersey; researchers began to look for autism’s causes at home; and I attended the November 21st meeting of the Interagency Autism Coordinating Committee (IACC), at which the draft of the Strategic Plan [...]
Have an opinion? Leave a comment: