Interagency Autism Coordinating Committee Members Who Do NOT Show Up!
By Katie Wright
I hope that as many people as possible in our community watch the IACC meetings. The Office of Autism Research Coordination National Institute of Mental Health makes it easy! This department, directed by Dr. Susan Daniels, provides comprehensive details of every meeting as well as an almost minute-by-minute breakdown of the program. This is tremendously helpful.
Before I get started with the content of the meeting I want to address the major problem of absenteeism. Didn’t Woody Allen say 90% of life is showing up? Well I wish certain IACC members would try actually attending these committee meetings. I don’t think requiring IACC members to come to meetings is setting the bar too high. No one, least of all the public members, are forced to take IACC seats. In early 2011 Director Kathryn Sebelius reminded the committee than many, many, many members of the ASD community would like to serve on IACC. So why did some public members take committee seats if they could not commit to attending just 6 meetings a year?
In 2010 there was a crisis of leadership within IACC. A leading federal IACC member resigned after sending inappropriate notes during meetings. Parents throughout the autism community were frustrated with IACC’s insufficient number of public members. The community was also disappointed with IACC’s failure to address environmental science or biomedical treatment research.
Autism Speaks, SafeMinds, the National Autism Association and TACA were the organizations behind the effort for more IACC accountability and better stakeholder representation.
Dr. Francis Collins graciously invited the entire autism community to the NIH to discuss these issues. The next month Dr. Collins asked Dr. Gerry Fiscbach of the Simons Institute to take an IACC seat. Simons is an academic foundation that conducts brain and gene research only. It does not have a public membership mechanism. Dr. Collins also invited Denise Resnick, ASD parent and director of an Arizona based autism intervention organization, Ari Ne’Man of the HF adult community, Dr. Marjorie Salomon of MIND and Dr. Geri Dawson of Autism Speaks to take IACC seats.
Dr. Collins chose NOT to appoint NAA President, Wendy Fournier or TACA legislative liaison Becky Estepp to IACC. These mothers represent over 30,000 actual ASD families. The sad irony is that it was these mothers who had spearheaded the effort for more public membership seats. The NAA and TACA organizations have nation wide chapters, conduct environmental and biomedical research and provide a tremendous amount of free services to ASD families. In short NAA and TACA are actually representative of the autism community of families.
So how has Sebelius’ picks panned out? Let’s take a look! Dr. Dawson is indeed an active and productive IACC member. Dr. Dawson has attended every meeting and has taken on a great deal of extra work in revitalizing the Strategic Plan. So that’s the good news.
Dr. Fischbach has been absent for at least 3 of the 6 IACC meetings. When not at IACC Fischbach can frequently be found making videos with the president of the Childrens Hospital of Boston in which he argues there is absolutely no autism epidemic. So thanks for that.
Denise Resnick is a caring parent/ advocate within the ASD community. But Ms. Resnick founded and operates 1 autism service organization in 1 state . Ms. Resnick did not attend the meeting with Dr. Collins, nor the first IACC meeting, nor April’s IACC meeting and I believe she missed an additional meeting in between. Ms. Resnick is sometimes on the phone but that not an effective mode of participation. The phone connections are almost impossible to understand and result is no meaningful interaction/ input from the person on the line. We need public members in those seats! Again there are only 4 to 6 meetings a year. People need to show up.
IACC is and should be big commitment. If I was ever offered an IACC seat, I know, lets suspend our disbelief for a second, I could not accept. Public members have a responsibility to a million families to attend ALL meetings AND work diligently behind the scenes ensuring that the Strategic Plan is representative our childrens’ needs as well as the community’s scientific priorities.
I am unclear why psychiatrist Dr. Marjorie Salomon was appointed to IACC. IACC desperately needs the perspective of an ASD clinician, a biomedical researcher, an environmental scientist or a toxicologist. What IACC did not need were more psychologists or psychiatrists. IACC already had that covered - in spades! Dr. Salomon has indeed attended almost all meetings. However, Dr. Salomon says little during meetings and appears unfamiliar with biomedical research as well as the views and concerns of families with autism.
OK, so it is time for Dr. Sebelius and Dr. Collins to start thinking about making some new IACC appointments. The terms of public members are set to expire this year. Let’s hope Dr. Sebelius makes some wiser choices.
Katie Wright is Contributing Editor to Age of Autism.
Yes IACC could go more high tech but that isn't the solution here. Participation is all the power we have. The meetings are already large, one has to be totally on top of the quickly moving discussions to be heard. If we don't show up what kind of message does that send?
Just do not accept the job, please, if you cannot attend meetings. Too many others are willing to fill those seats and give 100%.
Posted by: Katie wright | May 09, 2011 at 07:37 AM
These meetings don't have to be 'just' via telephone; you can use SKYPE, for example.
Posted by: Bayareamom | May 07, 2011 at 04:51 PM
Katie,
I quite agree - whatever other arrangements might be made - it certainly is very shoddy if people accept an appointment and then don't make the effort to be there.
John
Posted by: John Stone | May 07, 2011 at 12:28 PM
IACC mets just 6 times a year
And
All members' travel costs are reimbursed
Posted by: Katie wright | May 07, 2011 at 11:44 AM
How many times I have taken the Bolt Bus from Boston to NYC then on to DC, to save money for overnight in a hotel and attend IACC meetings. My son with autism is 48 years old. I have spent 2/3 of my sad life learning everything I can about language development and the brain. My 3 to 5 minute presentations are always pointedly ignored (as are others who point out problems with perinatal/neonatal care).
Autism could have been a thing of the past decades ago. I am so sad that families are increasingly having to deal with this affliction. I would gladly show up at every IACC meeting if I were appointed, but I am the person after the last they would consider.
Posted by: Eileen Nicole Simon | May 07, 2011 at 06:37 AM
Australia
@ John Stone
My "hubby" is a criminal barrister and on many occasions he has organised a "videolink" at the courts to various other courts throughout the state of Victoria for those criminals unable to travel to the main courts in Melbourne.
There should be no excuses in this age of technology.
Like (@ Laura) states, "we show up for our kids everyday!"
Elizabeth (AussieMum)
Posted by: AussieMum | May 07, 2011 at 02:43 AM
I have to agree with Katie regarding the need for the members to attend the meetings in person. There may be a different experience with non-governmental entities, but my experience with telephone conferencing at IEP meetings is similar to what Katie describes at the IACC meetings.
At a number of the IEP meetings that I have attended wherein one or more of the participants attended via telephone, there have been problems. There has been trouble establishing the connection(s) and trouble maintaining the connection(s). The connection could be lost completely and the other participants not notice for some time. In addition to these technical difficulties, one or more persons who were attending in person could talk over the person attending via telephone. At least once, one of the participants attending via telephone only contributed to the meeting when directly asked a question.
Our children need to have people actively participating and advocating on their behalf.
Posted by: Carolyn M | May 07, 2011 at 12:45 AM
I agree with the comment re: virtual meetings. There is no excuse these days to require those of whom may live quite a distance away from these meetings, to have to travel to 'attend' them. My husband is an attorney and has attended many a meeting right here in our home.
Posted by: Bayareamom | May 06, 2011 at 09:28 PM
Katie, thank you for calling it like it is.
Posted by: Taximom | May 06, 2011 at 06:52 PM
Hi Katie
As an inhabitant of a small country it seems to me astonishing that we don't today have effective technology in a country as large as USA for people to attend meetings by virtual means. It certainly seems to privilege people in striking distance of DC (who also may not bother to turn up it seems). Against this I could see that it is greatly preferable if people do turn up at a main location, and better technology might have the undesirable effect of making them even less inclined to! But, frankly, telephone links seem a bit primitive these days.
Of course, even this makes no impact on the unrepresentativeness, ignorance and indifference of so many delegates.
John
Posted by: John Stone | May 06, 2011 at 04:23 PM
Listen I know IACC is demanding, it should be. My son requires so much of my time right now. I am not saying I could serve on IACC. That is why I would say no thank you. Others in my position should say no thank you as well. HOWEVER, I know of MANY amazing Mom and Dad advocates as well as clinicians and researchers who are ready to go and fully commit to IACC now.
Dad advocate I respectfully disagree w/ you. IACC members need to show up in their seats. They just do. If you don't think you can do that do not accept the appointment. No, I do not think the phone calls work well at all. Not at all. I have probably listened to over 100 yrs of IACC meetings and I can tell you without a doubt that the people on the phone rarely make ANY meaningful contributions.
IACC members on the phone cannot talk w/ parents in attendance, they cannot talk w/ guest speakers or confer w/ other IACC members. 99% of the people on the phone say nothing other than their name during introductions.
Ms. Resnick should not have accepted this job. Although she is a great advocate for families Ms. Resnick was also absent for for nearly all the mini group workshops in 2010. Once again she accepted an important job as the sole family representative in the IACC treatment workshop for the Strategic Plan yet was unable to attend any meetings.
Life is hard and things happen- but clearly Ms. Resnick cannot and should not have committed to IACC in the first place.
Dr. Fischbach almost never attends. He should just resign now.
A million families are relying on public members to SHOW UP and advocate as strongly as they can. The phone is not good enough.
Just wait until I get to IACC's federal members.....
Posted by: Katie Wright | May 06, 2011 at 03:52 PM
Shame on the "no shows"- there should be some kind of system where you cannot serve if your attendance is below a certain point. Otherwise they are wasting everybody's time.
Posted by: Jen | May 06, 2011 at 10:42 AM
Get me on the dang board. I'll give them a piece of my mind at every freakin' meeting!!!
Posted by: Kevin | May 06, 2011 at 09:38 AM
I agree with your post above Katie, with the exception that Ms. Resnick, who is a stong advocate for the community and located way out west, as well as others, shouldn't have to travel to DC for every meeting. Conference calls work fine in the private sector.
Ne'eman? Don't get me started. He appears to be on the committee for symbolic rather than substantive effect, given what I've seen, so I don't want to pile on. Let's leave at that.
Posted by: Dadvocate | May 06, 2011 at 09:30 AM
Sadly, none of this is surprising to me. Sebelius has effectively silenced the media regarding the allegedly erroneous "vaccines cause autism" theory. She has no desire to properly staff the IACC with members who can make any difference to our community. Simply put, she does not care about anything more than protecting the status quo of vaccination policy in the US. That members of the IACC cannot find the time or desire to show up for six meetings makes perfect sense to me. What I don't understand is how Sebelius or anyone appointed to the IACC can look at herself or himself in the mirror each morning.
Posted by: Not an MD | May 06, 2011 at 08:56 AM
Dear IACC members,
We have to show up for our kids everyday. Do you think you could show up for six meetings?
...
I have no words.
Posted by: Laura | May 06, 2011 at 07:57 AM
Thank-you, Katie. Regarding Dr. Salomon, or indeed anyone not familiar with the pertinant issues. If these folks have day jobs and families that prevent them from taking the initiative to pick through and become familiar with the important research, which is incredibly important and hugely time consuming, as anyone trying to recover their child knows, someone needs to take control and produce the relevent documentation and present it simultaneously to all members on a regular basis, in between meetings, so that there are no longer any excuses on their part. It is the same with politicians. With each turnover, that new person needs to be educated about the issues. There are many people out there who would probably make better, more educated decisions, if only they were educated. Getting assigned to a committee does not ensure that they have the right information in their hands. In the meantime, they will only see the whole autism tragedy, through the narrow periscope of their own daily, normal lives and the very specific requirements of their own jobs.
Posted by: Jenny | May 06, 2011 at 07:40 AM