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Xavier Becerra please seat a new IACC quickly

7 Dec

Xavier Becerra, the news is reporting that you will be nominated to be the new head of the Department of Health and Human Services. Congratulations. You will have a lot to do when you get started. One of those tasks is to seat a new Interagency Autism Coordinating Committee.

Please do this quickly. Please.

The IACC serves a very important mission, and we really could have used them this year to address the unique challenges of the pandemic. Not having an IACC in place hurts our communities, our people.

The law reinstating the IACC was signed on Sept. 30, 2019. Over a year ago. Nominations for members was held between November 19, 2019 and February 21, 2020. So HHS has had those nominations for over 9 months. I’m sure your staff can put the names of good candidates in front of you on day one. This should be an easy task to get done, do it quickly. Please.

—
By Matt Carey

We needed the IACC in 2020. It’s past time to re-form it

13 Sep

The U.S. has a committee called the Interagency Autism Coordinating Committee. It’s mandated by law, a law that has been periodically renewed. Most recently as the Autism CARES Act of 2019, public law 116-60. Signed into law on Sept. 30, 2019, nearly a year ago.

I was a member of a previous incarnation of the IACC. The IACC is limited in what it can do, but there are areas where it is uniquely capable of action. Let’s use the pandemic as an example:

The IACC could bring together experts to share what is known about how the pandemic would affect the autism communities. What strategies work for remote learning for autistic students? What strategies might help for group homes where individuals are unable to get out into the community? What are the medical considerations of a disease like COVID-19 on autistic people?

The IACC brings in experts in each meeting to discuss topics of importance to the community. The topics above and more could be covered. Recommendations and information could be gathered and written into reports and web pages for members of the community to use.

The IACC also recommends research funding strategies. I am 100% certain that there is a lack of information on how the autism communities could best react to the pandemic. Right now is the time to focus research funding into how the pandemic is affecting autistic people and what works and what doesn’t. Because there will be another pandemic.

The last IACC term ended with the sunset of the previous Autism CARES Act, at the end of September in 2019.

In the best of times, there is no reason for the IACC to go through such a long hiatus. These are not the best of times. The IACC would have to meet remotely, but that is no reason to not form a new committee. The best work of the IACC is done outside of the meetings, gathering and reporting on research. We need that now.

—

By Matt Carey

Dr. Joshua Gordon Appointed as New IACC Chair

25 Oct

The Interagency Autism Coordinating Committee (IACC) has just announced a new chair, Joshua Gordon. This follows the pattern of the IACC chair being the same as the director of the National Institute of Mental Health (NIMH).

Here is the announcement just sent out:

Joshua Gordon, M.D, Ph.D., who was appointed as the Director of the National Institute of Mental Health (NIMH ) in September 2016, has been appointed as the new Chair of Interagency Autism Coordinating Committee. Prior to joining the NIH, Dr. Gordon served on the faculty of Columbia University’s Department of Psychiatry from 2014-2016, where he used his training in psychiatry and neuroscience to combine laboratory-based studies examining mouse models of human psychiatric illness with clinical practice and teaching in general psychiatry. His expertise in neurophysiology, or the study of patterns of electrical activity in the brain that underlie behavior, has allowed him to investigate features of the neural circuitry that underlies mental health conditions such as schizophrenia, anxiety, and depression. He earned his B.A. degree in Biology from Washington University in St. Louis, and his M.D./Ph.D. from the University of California at San Francisco. He did his residency and fellowship in Psychiatry at Columbia University/New York State Psychiatry Institute. While teaching and conducting research at Columbia University, he also directed Neuroscience Education for Columbia’s Psychiatric Residency Training Program. Dr. Gordon has received several awards and grants for his research, including an IMHRO Rising Star Award, two NARSAD Young Investigator awards, an APA-GlaxoSmithKline Young Faculty award, and research grants from the National Institute of Mental Health. In his role as NIMH Director, Dr. Gordon oversees the lead federal agency for research on mental health disorders and conditions. With an annual budget of approximately $1.5 billion, NIMH supports more than 2,000 mental health and neuroscience-related research grants and contracts at universities and other institutions across the country and overseas. In addition, the NIMH intramural research program supports approximately 300 scientists who work in laboratories at NIH. The mission of the NIMH is to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery and cure.

The time is NOW–please give the IACC input on the Strategic Plan

6 Jul

As many readers here may recall, I spent a few years as a public member to the Interagency Autism Coordinating Committee (IACC). The IACC is mandated by the same law that commits the government to funding autism research. The most important thing the IACC does is draft the Strategic Plan. This is the how the autism communities tell the government and other funding agencies what research projects we want performed. That Plan is up for a major revision. Something that hasn’t happened since before I was on the IACC. Now is when the real work of the IACC is going to happen.

And they want your feedback. They need your feedback. There is a website open now to submit feedback: Request for Public Comments – 2016 IACC Strategic Plan. I list the questions below so you can prepare–but go to that website and give feedback. Do it now. Don’t put it off and possibly miss the chance to give feedback.

Maybe you want to give feedback on only one topic. Great. Maybe you want to give a lot of feedback. Great. But do it. Do it now.

Why?

Do you want a major focus on, say, supporting high support adults? Early intervention? Better education supports and strategies for older students?

We aren’t talking small amounts of money. Here’s a figure from the IACC’s Portfolio Analysis from 2012. That’s over $300,000,000.00 spent in one year. Three hundred million plus dollars.

Autism Expenses 2012

Is that the breakdown you want to see? Is that what will make a difference in your life, or the life of someone you care about?

It isn’t what I want or need. Research takes time to impact real life. I want autistic adults–especially those with high support needs–to have a better life. I’d like it NOW, but I need it by the time my kid ages out of school. In the pie chart above, “lifespan issues” account for 1% of the total funding. Lifespan issues is the term for issues involving adults.

1%.

That has to change. And I’ll give that feedback, and more.

You may have other areas, or other specific projects you want to see advances in. Let the IACC know. Let them know NOW. Request for Public Comments – 2016 IACC Strategic Plan

Here are the questions you will see on the website.

Question 1: When Should I Be Concerned? (Diagnosis and Screening)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 1. Topics include: diagnosis and screening tools, early signs, symptoms, and biomarkers, identification of subgroups, disparities in diagnosis

Question 2: How can I understand what is happening? (Biology of ASD)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 2. Topics include: molecular biology and neuroscience, developmental biology, cognitive and behavioral biology, genetic syndromes related to ASD, sex differences, immune and metabolic aspects, and co-occurring conditions in ASD

Question 3: What Caused This to Happen and Can it be Prevented? (Risk Factors)

Please identify what you cosnider the most important priorities and gaps in research, services and policy for Question 3. Topics include: genetic and environmental risk factors, gene-environment interactions, and the potential role of epigentics and the microbiome

Question 4: How can I understand what is happeing? (Treatments and Interventions)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 4. Topics include: behavioral, medical/pharmacologic, educational, techonology-based, and complementary/integrative interventions.

Question 5. Where can I turn for services? (Services)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 5. Topics include: service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion.

Question 6. What does the future hold, especially for adults? (Lifespan Issues).

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 6. Topics include: health and quality of life across the lifespan, aging, transition, and adult services, including eduction, vocational training, employment, housing, financial planning and community integration.

Question 7. What other infrastructure and surveillance needs must be met? (Lifespan Issues)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 7. Topics include: research infrastructure needs, ASD surveillance research, research workforce development, dissemination of research information, and strengthening collaboration.

Go to the website. Request for Public Comments – 2016 IACC Strategic Plan. Give them feedback. Did I mention you should do it now and not wait?

—
By Matt Carey

The IACC will meet in January: submit comments now!

14 Dec

Below is a meeting announcement for the U.S. Interagency Autism Coordinating Committee (IACC).

Now would be a great time to submit a written comment to IACCpublicinquiries@mail.nih.gov

As a former member of the IACC I can tell you that comments are read and considered seriously.  I can also tell you that the groups pushing the idea that vaccines cause autism do a good job of submitting comments.  There’s a lot of work to be done with the new IACC.  The Strategic Plan needs to be rewritten.  Now is when your input can have a big impact.

Meeting of the Interagency Autism CoordinatingCommittee

Please join us for an IACC Full Committee meeting that will take place on Tuesday, January 12, 2016 from 9:00 a.m. to 5:00 p.m. ET at the National Institutes of Health, 31 Center Drive, Building 31, C Wing, 6thFloor, Conference Room 6, Bethesda, MD 20892. Registration will begin at 8:00a.m. The meeting will also be available by live webcast and conference call.

Agenda: To discuss business, updates and issues related to ASD research and services activities. The committee will discuss the next update of the IACC Strategic Plan.

Meeting location:
National Institutes of Health

31 Center Drive

Building 31, C Wing, 6th Floor, Conference Room 6

Bethesda, MD 2089

Nearest Metro stop:

Medical Center Drive Metro Station – Red Line

 

In the interest of security, NIH has instituted stringent procedures for entrance onto the NIH campus. All visitor vehicles, including taxicabs, hotel, and airport shuttles will be inspected before being allowed on campus. Visitors will be asked to show one form of identification (for example, a government-issued photo ID, driver’s license, or passport) and to state the purpose of their visit. Also as a part of security procedures, attendees should be prepared to present a photo ID at the meeting registration desk during the check-in process. Pre-registration is recommended.

 

Pre-Registration:

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered. Online registration will be opening shortly. Please check the IACC website for updates.

 

Public Comment – Deadlines:

Notification of intent to present oral comments: Monday, January 4th by 5:00p.m. ET

Submission of written/electronic statement for oral comments: Tuesday, January 5th by 5:00p.m. ET

Submission of written comments: Tuesday, January 5th by 5:00p.m. ET

 

Remote Access:

The meeting will be remotely accessible by videocast  (http://videocast.nih.gov/) and conference call.  Members of the public who participate using the conference call phone number will be in listen-only mode.
Conference Call Access
USA/Canada Phone Number: 800-988-9744
Access code: 3700810

 

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed below at least five days prior to the meeting. If you experience any technical problems with the conference call, please e-mail at helpdeskiacc@gmail.com or call the IACC Technical Support Help Line at 415-652-8023.

 

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda, materials and information about prior IACC events.

 

Contact Person for this meeting is:

 

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 6182A
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov

HHS Announces Appointment of New Membership and New Chair for the Interagency Autism Coordinating Committee

28 Oct

The Secretary of Health and Human Services has selected and seated a new Interagency Autism Coordinating Committee. The press release is below.

HHS Announces Appointment of New Membership and New Chair for the Interagency Autism
Coordinating Committee

The U.S. Department of Health and Human Services (HHS) today announced the appointments of new
and returning members to the Interagency Autism Coordinating Committee (IACC), reauthorized under
the Autism CARES Act. After an open call for nominations for members of the public to serve on the
committee, Secretary of Health and Human Services, Sylvia M. Burwell, appointed this group of
individuals to provide her with advice to advance research, strengthen services, and increase
opportunities for people on the autism spectrum. The public member appointees include three adults
on the autism spectrum, several family members of children and adults on the autism spectrum,
clinicians, researchers, and leaders of national autism research, services, and advocacy organizations.
Many of the appointed individuals serve dual roles, dedicating their professional careers to helping
people on the autism spectrum because of their personal experiences with autism spectrum disorder
(ASD). The first meeting of the new committee will take place on November 17, 2015 in Rockville,
Maryland.

In addition to the new public members, the IACC will have a new chair when it reconvenes. Dr. Thomas
Insel, who served as the Director of the National Institute of Mental Health (NIMH) and as Chair of the
committee for more than a decade, announced his planned departure for Google Life Sciences in at the
end of October 2015. Dr. Bruce Cuthbert, who will become Acting Director of NIMH on November 1,
has been appointed to serve as the IACC Chair over the next year.

Autism research, services, and advocacy organizations represented by new and returning appointees to
the committee include: Association of University Centers on Disabilities, Arc of the United States, Autism
Science Foundation, Autism Speaks, Autism Society, Simons Foundation, and Autistic Self Advocacy
Network. Federal departments and agencies represented on the committee include several agencies
within HHS: Administration for Children and Families, Administration for Community Living, Agency for
Healthcare Research and Quality, Centers for Disease Control and Prevention, Centers for Medicare &
Medicaid Services, Food and Drug Administration, Health Resources and Services Administration, and
National Institutes of Health; as well as Department of Education, Environmental Protection Agency, and
Department of Defense .

The responsibilities of the committee include annually updating the IACC Strategic Plan for ASD,
preparing an annual summary of advances in ASD research, monitoring federal ASD activities, and
providing guidance to the HHS Secretary on matters related to ASD.
The public members appointed by the Secretary to serve on the renewed IACC are:

David Amaral, Ph.D.
Dr. David Amaral is a new public member of the IACC. He is a Professor of Psychiatry, Behavioral
Sciences and Neuroscience at the University of California, Davis. He is also Chair of the Beneto
Foundation, Founding Research Director of the UC Davis MIND (Medical Investigation of
Neurodevelopmental Disorders) Institute, and Director of the Autism BrainNet. Dr. Amaral conducts
research on the neurobiology of ASD. He received a joint Ph.D. in psychology and neurobiology from the
University of Rochester and carried out postdoctoral work at Washington University in neuroanatomy.

James Ball, Ed.D., B.C.B.A.-D.
Dr. Jim Ball has served on the IACC as a public member since 2012. He is a Board Certified Behavior
Analyst (BCBA-D) and President and CEO of JB Autism Consulting. He has worked in the autism field for
more than 25 years, providing educational, employment, and residential services to children and adults
affected with autism. He is the Executive Director of the Autism Society’s (AS) Board of Directors. He
received his Doctor of Education degree from Nova Southeastern University in Fort Lauderdale, Florida.

Samantha Crane, J.D.
Ms. Samantha Crane is a new public member of the IACC. She is Legal Director and Director of Public
Policy at the Autistic Self Advocacy Network (ASAN) and an autistic self-advocate. Ms. Crane previously
served as staff attorney at the Bazelon Center of Mental Health Law, focusing on enforcing the right to
community integration as established by the Supreme Court in Olmstead v. L.C.. Ms. Crane holds a B.A.
from Swarthmore College, with high honors, in Psychology, and she received her J.D. degree from
Harvard Law School.

Geraldine Dawson, Ph.D.
Dr. Geraldine Dawson has served on the IACC as a public member since 2012. She is a Professor of
Psychiatry and Behavioral Sciences in the Duke School of Medicine and a faculty member of the Duke
Institute for Brain Sciences. Dr. Dawson also is Director of the Duke Center for Autism and Brain
Development and President of the International Society for Autism Research. Dr. Dawson is a licensed
clinical psychologist and researcher who has published extensively on ASD, focusing on early detection,
intervention, and early brain development. She received her Ph.D. in Developmental Psychology with a
minor in Child Clinical Psychology from the University of Washington and was a postdoctoral fellow at
the University of California at Los Angeles.

Amy Goodman, M.A.
Ms. Amy Goodman is a new public member of the IACC. She is the Director of the Arc of the United
States’ Autism NOW Resource and Information Center, which serves the needs of individuals with
autism and their families. She is a self-advocate for individuals on the autism spectrum and holds a
master’s degree in special education from Marshall University in West Virginia.

Shannon Haworth, M.A.
Ms. Shannon Haworth is a new public member of the IACC. She is the Public Health Program Manager
for the Public Health team at Association of University Centers on Disabilities (AUCD) and a parent of a
child on the autism spectrum. She has a master’s degree in Applied Behavior Analysis and a graduate
certificate in Autism from Ball State University. She has also earned a Post Baccalaureate Graduate
Certificate in Disability Leadership from Virginia Commonwealth University, is currently a doctoral
candidate (DrPH) studying Public Health at Walden University, and is a certified Early Intervention
Specialist for the state of Virginia.

David Mandell, Sc.D.
Dr. David Mandell has served on the IACC as a public member since 2012. He is an Associate Professor of
Psychiatry and Pediatrics at the University of Pennsylvania’s School of Medicine. He is a health services
researcher and psychiatric epidemiologist whose work focuses on identifying the best ways to organize,
finance and deliver services to children with autism and other psychiatric and developmental disabilities.
Dr. Mandell holds a Bachelor of Arts in psychology from Columbia University and a Doctor of Science
from the Johns Hopkins School of Hygiene and Public Health.

Brian Parnell, M.S.W., C.S.W.
Mr. Brian Parnell is a new public member of the IACC. He has led a distinguished career in child welfare
and disabilities services and as an administrator of public and nonprofit agencies, having supervised and
managed social service programs for more than 20 years. Mr. Parnell currently works at the Utah
Division of Services for People with Disabilities, Department of Human Services, and helped develop
Utah’s Medicaid Autism Waiver program. Mr. Parnell is a parent of seven children, three of whom are
on the autism spectrum.

Kevin Pelphrey, Ph.D.
Dr. Kevin Pelphrey is a new public member of the IACC. He is the Harris Professor in the Child Study
Center and Professor of Psychology at Yale University and Director of the Yale Center for Translational
Developmental Neuroscience. He also is the father of two children on the autism spectrum. Dr.
Pelphrey’s research focuses on the development of brain mechanisms for social cognition in children
with and without ASD. He also is the Principal Investigator for a federally-funded multisite Autism Center
for Excellence, “Multimodal Developmental Neurogenetics of Females with ASD.” Dr. Pelphrey received
his Ph.D. in Psychology from the University of North Carolina at Chapel Hill.

Edlyn Peña, Ph.D.
Dr. Edlyn Peña is a new public member of the IACC. She is an Assistant Professor of Higher Education
Leadership at California Lutheran University (CLU) and is a parent of a child on the autism spectrum. Dr.
Peña’s research focuses on social justice issues for ethnic/racial minorities and students with autism and
other developmental disabilities in higher education. She earned her Ph.D. in Education with a
concentration in Higher Education from the University of Southern California.

Louis Reichardt, Ph.D.
Dr. Louis Reichardt is a new member of the IACC. He is the Director of the Simons Foundation Autism
Research Initiative (SFARI), whose goal is to improve the understanding, diagnosis, and treatment of ASD
by funding innovative, high quality research. Prior to this, he was a Professor of Biochemistry and
Biophysics at the University of California, San Francisco, where he directed its neuroscience graduate
program and Herbert W. Boyer Program in Biological Sciences. His research has focused on
neurotrophins, a family of proteins that play a key role in brain development and function. Dr. Reichardt
was a Fulbright scholar and earned his undergraduate degree from Harvard University and a Ph.D. in
Biochemistry from Stanford University.

Robert Ring, Ph.D.
Dr. Robert Ring has served on the IACC as a public member since 2014. He is the Chief Science Officer
(CSO) for Autism Speaks, the largest autism science and advocacy organization in the U.S. Dr. Ring is
responsible for leading the science program at Autism Speaks, which features a diverse portfolio of
research investments targeting medical research on the underlying biology of ASD, diagnosis, treatment,
etiology, public health, and innovative technologies. Dr. Ring holds adjunct faculty appointments in the
Department of Psychiatry at Mount Sinai School of Medicine (New York) and the Department of
Pharmacology and Physiology at Drexel University College of Medicine (Philadelphia). He holds a Ph.D. in
Molecular Neurobiology from City of Hope National Medical Center in Southern California.

John Elder Robison
Mr. John Elder Robison has served on the IACC as a public member since 2012. He is the Neurodiversity
Scholar in Residence at the College of William & Mary in Williamsburg, Virginia, where he teaches
courses on neurodiversity and living with autism. He is an autistic adult who is best known for working
to increase public understanding of autism, and he is the author of several popular books about living
life with autism, including Look Me in the Eye, My Life with Asperger’s, Be Different: Adventures of a
Free-Range Aspergian, and Raising Cubby.

Alison Singer, M.B.A.
Ms. Alison Singer has served on the IACC as a public member since 2007. She is Co-Founder and
President of the Autism Science Foundation, a not-for-profit organization launched in April 2009 to
support autism research by providing funding and other assistance to scientists and organizations
conducting, facilitating, publicizing, and disseminating autism research. Ms. Singer is the mother of a
daughter with autism and legal guardian of her adult brother with autism. Ms. Singer graduated magna
cum laude from Yale University with a B.A. in Economics and has an M.B.A. from Harvard Business
School.

Julie Lounds Taylor, Ph.D.
Dr. Julie Lounds Taylor is a new public member of the IACC. Dr. Taylor is an assistant professor of
Pediatrics and Special Education at Vanderbilt University and an Investigator at the Vanderbilt Kennedy
Center. Her research focuses on factors that promote a positive transition to adulthood for individuals
with ASD and their families, as well as the impact of having a sibling with an intellectual or
developmental disability. She has published research on a variety of autism and disability servicesrelated
issues, including sex and gender differences, peer victimization, transition planning, secondary
education and vocational training, employment, and daily life skills for people on the autism spectrum.
Dr. Taylor earned her Ph.D. in developmental psychology at the University of Notre Dame.

***

The IACC is a Federal advisory committee that was created by Congress in an effort to accelerate
progress in ASD research and services. The IACC works to improve coordination and communication
across the Federal government and work in partnership with the autism community. The Committee is
composed of officials from many different Federal agencies involved in autism research and services, as
well as adults on the autism spectrum, parents and family members of individuals on the autism
spectrum, advocates, researchers, providers, and other members of the autism community. The
documents and recommendations produced by the IACC reflect the views of the Committee as an
independent advisory body and the expertise of the members of the Committee, but do not represent
the views, official statements, policies or positions of the Federal government. For more information on
the IACC, please visit: www.iacc.hhs.gov.

Secretary Burwell it is beyond unacceptable that there is no seated IACC

24 Oct

In the U.S. we have a promise from our government to focus attention on autism and to include community participation in that effort. There is a law in fact (Public Law No: 113-157) although you may think of it as the Autism CARES Act or the previous bills (the Combating Autism Act and the Combating Autism Reauthorization Act).

That law stipulates that the Secretary of Health and Human Services shall appoint a committee:

Establishment.–The Secretary shall establish a committee, to be known as the `Interagency Autism Coordinating Committee’ (in this section referred to as the `Committee’), to coordinate all efforts within the Department of Health and Human Services concerning autism spectrum disorder.

This Committee, the IACC, has specific annual deliverables such as a Strategic Plan for autism research and an update of advances in autism research. The Committee is required to include non Federal Government members including autistics, parents and members of large non-government autism organizations. Regular meetings are to be held and public input solicited.

And none of this is happening.

With the new law required more from the government. For example, a report on autistics transitioning out of school. While the law doesn’t require direct IACC input in this, that would be the natural way to bring public input into that report (and to make sure that report is, indeed, being produced). Would you like to see that the report includes the needs of students transitioning to high support living placements? Or those who are in need of job support? Would you like to know that medical issues are being addressed? Would you like to have your voice heard at all in this process?

Well, as of now, it isn’t happening.

And there is no reason for that.

Let me repeat this: there is NO REASON that an IACC isn’t in place right now. And it was not Congress’ intent that there be a gap in IACC activity when they drafted this law. Consider this paragraph from the House report that was produced with the bill. The Congressional Committee that drafted the bill stated:

The Committee appreciates the diverse makeup of IACC, and would like the panel to continue to represent the diversity within the autism community and remain a place where all viewpoints can be heard. Current members include parents and legal guardians, individuals with an autism diagnosis, advocacy organizations, and medical researchers. The Committee believes that these groups should continue to be represented. After previous reauthorizations of the Combating Autism Act, IACC has been dissolved and reconstituted. The Committee believes that this is unproductive and disruptive, and would like IACC to remain active, as the changes in this bill are instituted to ensure continuity.

Let’s get a little into the details here. The previous IACC was dissolved at the end of September, 2014. This is the date stipulated in the law as enacted in the Combating Autism Reauthorization Act (CARA). All well and good except for one very important point: the provisions under CARA were superseded by Autism CARES Act before the sunset of the IACC.

In other words, the law as in place in September 2014 did not call for the IACC to be disbanded. I will state that I was the only member of the IACC to voice opposition to being disbanded. The intent and the wording of the law was clear to me: there was no reason for us to disband.

Even if I am completely wrong about that, there is no reason why a new Committee has not been formed. Consider the last time an IACC was dissolved and reformed.

Committee dissolved in September of 2011. The law in place at the time stipulated this. The reauthorization was signed into law the next day.

The new committee (of which I was a member) was announced at the end of March 2012. Yes, six months passed without a committee being in place.

The new committee did not meet until July of 2012. Yes, over eight months after the previous IACC was dissolved. Consider that the previous full meeting was in July of 2011 and you see that a year had passed without a meeting.

That was unacceptable.

And that was nothing compared to the situation we have today. The last IACC was dissolved at the end of September 2014. Over a year ago. And the last full committee meeting was in July of 2014. If a new IACC were announced today, given the time that it takes to organize meetings, we wouldn’t likely see a new Committee meet until February of 2016 at the earliest.

At best, we’ve lost about 2 years. At best.

The Strategic Plan that is in place today is outdated. The goals and strategies outlined in it have deadlines that have already passed. No annual autism research updates have been provided to Congress for 2014 or 2015. No advice has been provided to the Secretary.

Public input has not been heard by decision makers who are members of the IACC. And that is one of the greatest losses.

And now consider this: Autism CARES is an example of a “single disease” bill. Leaving aside the term disease, it’s worth noting that this sort of legislation is quite unpopular now in Congress. As a community we are lucky that we have this in place to focus federal attention and funding on autism. Congress promised funding and asked for some small things in return: a committee and annual reports from that committee.

I worry that by not seating a new committee we endanger the chances for a future re-authorization. If the Secretary (and we as a community) don’t seem to care about the existence of the Committee, what message is being sent to Congress?

In case you are wondering how valuable the IACC is–the IACC has acted as a model for other advocacy communities in terms of providing for public/federal partnership in crafting Federal strategies. There a many groups that would gladly take on an IACC type committee for themselves.

The IACC is a part of the framework that Congress promised to our communities. Promised and legislated. As I say above, it is beyond unacceptable that no Committee is currently in place.

—
By Matt Carey

Will a new IACC be seated soon?

22 Mar

The United States has a committee enacted by law called the Interagency Autism Coordinating Committee or IACC. The IACC describes itself on its web page as:

The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD). Through its inclusion of both Federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum.

The IACC mission is to:

Provide advice to the Secretary of Health and Human Services regarding Federal activities related to autism spectrum disorder.

Facilitate the exchange of information on and coordination of ASD activities among the member agencies and organizations.

Increase public understanding of the member agencies’ activities, programs, policies, and research by providing a public forum for discussions related to ASD research and services.
IACC meetings are open to the public and include presentations and discussions on a variety of topics, including activities and projects of the IACC, recent advances in science and autism policy issues. A portion of each meeting is reserved for public comment. A summary of each meeting is posted on the meetings & events page.

The thing is, the IACC hasn’t had a meeting since last September, and that wasn’t even a full committee meeting. They haven’t met because the committee was dissolved since the law that created that generation of the IACC ended. A new law was passed and enacted before the previous law hit its sunset date, and so the activities of the IACC will continue through 2019. A nomination process was opened to reconstitute the committee last fall.

Consider the events surrounding the formation of the recently ended IACC (the third committee if you are keeping count). We (I was a member) were formed at the end of March 2012 after a hiatus following the sunset of the 2nd committee in September of 2011. While the press release is dated the end of March, my recollection is that the announcement came April 1st.

So, here we are, nearing the end of March following the sunset of the previous committee in September of last year.

Nothing says that they have to follow the same pattern, but it would be reasonable to expect a new committee to be announced soon. As in April 1st, the start of Autism Acceptance Month (aka Autism Awareness Month). Expect a lot of press releases around April 1 and 2 (World Autism Awareness Day) for various autism related activities, mostly centering around the “awareness” month.

This said, I suspect the speculation will soon turn to who will be on the new (4th) Committee. It’s very safe and very appropriate to say that organizations which fund a lot of research will have representation on the Committee. Thus, someone from Simons Foundation (the largest private funder of autism related research), Autism Speaks and Autism Science Foundation. Someone forwarded me a link stating that the representative from SafeMinds was not seeking reappointment, but that doesn’t mean another member of SafeMinds couldn’t be appointed.

While the Autism Society of America doesn’t fund much research, they are a large member organization and someone from ASA has been on the IACC for at least the past two incarnations.

The Autistic Self Advocacy Network, ASAN, had a member on each of the last two committees. My understanding is that the ASAN representative to the last committee (Scott Robertson) landed a position in government which posed a conflict and he had to resign the last IACC. He was not replaced with a self advocate, ASAN member or not. So, I would not be surprised if there is not an ASAN member on the next committee. I also wouldn’t be surprised if an ASAN member is on the next committee. (How’s that for hedging my bets)

The law which calls for the IACC requires self-advocate representation. Scott Robertson, Noah Britton and John Elder Robison were on the previous committee and all were excellent. Noah did a great deal of work in writing subsections of the IACC strategic plan. John is likely the most vocal of any member on the Committee (aside from Tom Insel, the chair) and is pretty much willing to take on any topic, and able to speak to it well.

It was recently pointed out to me that the self-advocates so far have all been Caucasian males. While I appreciate the contributions of John, Scott and Noah, I would greatly appreciate seeing more diversity in this area.

I won’t go through all the rest of the public members, but I will bring up a few. David Mandell is a researcher I’ve had a great deal of respect for since pretty much I started reading autism research. He has a great deal of expertise on services, which is an area that will be of heightened importance for the next Committee. In the area of services, Paul Shattuck would be an excellent new addition. Both Paul and David ask questions few others ask–focusing attention on populations that just don’t get the attention that they should. Either or both would be an asset to the next Committee.

Geri Dawson was on the previous IACC, starting as a member of Autism Speaks. She is incredibly knowledgeable about autism research, especially what is current (and in the pipeline).

One person I would like to see return is Sally Burton-Hoyle. I wrote about a presentation she gave to the IACC last year. If you watch her presentation (it’s on the teen transition and supporting autistics in college, something she knows a great deal about as that’s her job) you will see that she’s also quite on target as someone to contribute for the new services focus of the IACC. She also represents a constituency we don’t speak to enough: adults who are not self-advocates. She had an adult autistic brother. Sally Burton-Hoyle and Alison Singer were the two people I am aware of who represented non self-advocate adults (Alison has an autistic brother).

I felt strongly that the IACC should not have been disbanded but continued with additional members added to meet the new mandates (and, also, allowing for those members who wanted to be done to be replaced). The new law was in effect in time to allow for the committee to continue. The House Report (from the Energy and Commerce Committee) stated:

The Committee appreciates the diverse makeup of IACC, and would like the panel to continue to represent the diversity within the autism community and remain a place where all viewpoints can be heard. Current members include parents and legal guardians, individuals with an autism diagnosis, advocacy organizations, and medical researchers. The Committee believes that these groups should continue to be represented. After previous reauthorizations of the Combating Autism Act, IACC has been dissolved and reconstituted. The Committee believes that this is unproductive and disruptive, and would like IACC to remain active, as the changes in this bill are instituted to ensure continuity.

But that’s in a report, not the law. While I agree with the Report, it might have helped if Congress had included this language in the bill. This language together with appropriations sufficient to staff the Office of Autism Research Coordination to a level that they can support the IACC and the other duties OARC has.

There’s a lot to do for the next Committee. There is a mandate to produce a services plan. The Stategic Plan for Autism Research needs to be updated. Besides the lost time in dissolving and reconstituting the IACC, the previous Committee was experienced and could have started work immediately.

Again, I’m expecting the next Committee to be announced in about a week and a half (April 1 or 2). I had hope it wouldn’t take this long, and I have even more hope that it won’t take longer than that. There’s a lot to be done.

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By Matt Carey

Sally Burton-Hoyle’s IACC presentation: Teen Transition

22 Dec

One member of the previous Interagency Autism Coordinating Committee (and I hope a member of the next IACC) is Sally Burton-Hoyle. Or to be more accurate, Prof. Sally-Burton Hoyle, as she teaches at Eastern Michigan University and holds the title Associate Professor. In the last full IACC meeting, Prof. Burton-Hoyle gave a presentation on the “Teen Transition”. I apologize that the closed captioning is not present in this video. One can find the video with the closed captioning at the NIH videocast website, here. Click on chapter 14 and you will go straight to her presentation.

She presents on the program to support autistics at Eastern Michigan University. The program seems like an excellent support system for autistics in college.

All to often, we in the autism communities seem to present our advocacy groups as primarily divided between adult self-advocates and parents of young kids with a very different set of challenges. And by this point in the article I suspect many people have put Prof. Burton-Hoyle in the category of “advocating for adult self-advocates”. And that would be a mistake. OK, sure, she is doing great work advocating for adults in college, but she is also the sister of an adult autistic who was not a self advocate. An adult who passed away early. And Prof. Burton-Hoyle brought that breadth of experience to the table at the IACC. And in my opinion that breadth of experience and breadth of advocacy is much needed on the IACC. There is a place for advocates with a more narrow focus, but with so few seats and such a varied autism community we need people on the IACC who will advocate for multiple sub-communities within the broader autism community.

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By Matt Carey

Final Reminder: 2014 IACC Call for Nominations Closes Friday, November 14, 2014!

13 Nov

The email below was just sent by the Office of Autism Research Coordination to remind the communities that the Interagency Autism Coordinating Committee is being reformed–nominations are still open but only until tomorrow.

In other words: if you want to be considered, or if you want to nominate someone else for consideration, now is the time to get those nominations in.

From OARC:

Final Reminder: 2014 IACC Call for Nominations Closes Friday, November 14, 2014!

Only one more day to send in submissions!

The Office of the Secretary of Health and Human Services (HHS) is seeking nominations of individuals to serve as non-federal public members on the Interagency Autism Coordinating Committee, a federal advisory committee established in accordance with the Combating Autism Act of 2006 (Public Law 109-416, PDF – 49 KB) and reauthorized by the Autism Collaboration, Accountability, Research, Education and Support Act of 2014 (Public Law 113-157, PDF – 211 KB).  The Committee, composed of federal officials and public stakeholders, provides recommendations and advice to the Secretary of HHS regarding issues related to autism spectrum disorder (ASD), including ASD research and services activities.

The Office of the Secretary of HHS has directed the Office of Autism Research Coordination to assist the Department in conducting an open and transparent nomination process. Nominations of new public members are encouraged, and current members may also be re-nominated to continue to serve. Self-nominations and nominations of other individuals are both permitted. Final selections and appointments of public members will be made by the Secretary. The period of service will be from the time of appointment through September 30, 2019.

The call for nominations opened on October 1, 2014 and will close at the end of the day (11:59 p.m.) on November 14, 2014. Please ensure e-mails or standard mail/Fedex are sent and date and time stamped by the given deadline.

Please click on the links below for information about the committee, and the requirements and instructions for submitting a nomination.

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