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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

It is time to renew the Autism CARES Act

21 May

The Autism CARES Act (Autism Collaboration, Accountability, Research, Education, and Support Act of 2019) has been introduced in the House of Representatives and the Senate. The existing Autism CARES Act will expire this year, so a new bill is needed to continue the work.

Autism CARES is good for the autism communities. Autism CARES continues the government’s focus on funding autism research and coordinating research with nongovernmental groups. This work has been ongoing since the Combating Autism Act was enacted in 2006.

The bill has yet to come up for a vote. It has been gaining sponsors (85 in the House and 22 in the Senate). My senators are not yet cosponsors of the bill, so I sent them messages urging them to do so. It’s easy. You can find your House representative here and your Senator here.

The text of the bill can be found in the link: H.R.1058 – Autism CARES Act of 2019. It’s basically a continuation and update of the existing bill–which as I noted above expires this year.

If you are wondering what the bill does, the current law states (among many other things):

The Director of NIH (in this section referred to as the “Director”) shall, subject to the availability of appropriations, expand, intensify, and coordinate the activities of the National Institutes of Health with respect to research on autism spectrum disorder, including basic and clinical research in fields including pathology, developmental neurobiology, genetics, epigenetics, pharmacology, nutrition, immunology, neuroimmunology, neurobehavioral development, endocrinology, gastroenterology, and toxicology. Such research shall investigate the cause (including possible environmental causes), diagnosis or rule out, early detection, prevention, services, supports, intervention, and treatment of autism spectrum disorder.

The current law also authorizes appropriations. Which means Congress says they are allowed to set aside a lot of money ($190M) for autism research, but doesn’t force Congress to actually put that in the budget. Still, it’s a lot better than most of the disability or disease communities have as a commitment.

Let me put that another way–in legislative language Autism CARES is a single disease specific bill. Leave aside the term “disease”. It’s a bill that supports a single community. Congress has long been pushing to move away from that. Autism has kept this status even while Congress has moved to restrict it. The way to insure that we keep this in place is to act. Let your legislators know it is time to support Autism CARES.

—
By Matt Carey

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

President Obama signs Autism CARES Act into law

12 Aug

The Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 has been signed by President Obama, making it law. This will extend and expand on the framework for authorizing appropriations for autism research and for coordinating research efforts in the U.S..

Here is the summary for the bill:

Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 or the Autism CARES Act of 2014 – (Sec. 2) Requires the Secretary of Health and Human Services (HHS) to designate an official to oversee national autism spectrum disorder (ASD) research, services, and support activities. Directs the official to implement such activities taking into account the strategic plan developed by the Interagency Autism Coordinating Committee (the Interagency Committee) and ensure that duplication of activities by federal agencies is minimized.

Extends through FY2019: (1) the developmental disabilities surveillance and research program; (2) the autism education, early detection, and intervention program; and (3) the Interagency Committee.

(Sec. 3) Includes support for regional centers of excellence in ASD and other developmental disabilities epidemiology as a purpose of grants or cooperative agreements.

(Sec. 4) Requires information and education activities to be culturally competent. Allows a lead agency coordinating activities at the state level to include respite care for caregivers. Allows the use of research centers or networks for the provision of training in respite care and for research to determine practices for interventions to improve the health of individuals with ASD.

(Sec. 5) Revises responsibilities of the Interagency Committee concerning:
• inclusion of school- and community-based interventions in the Committee summary of advances,
•monitoring of ASD research and federal services and support activities,
• recommendations to the Director of the National Institutes of Health regarding the strategic plan,
• recommendations regarding the process by which public feedback can be better integrated into ASD decisions,
•strategic plan updates and recommendations to minimize duplication, and
•reports to the President and Congress.

Revises Interagency Committee membership requirements to specify additional federal agencies that might be represented and to modify the non-federal membership.

(Sec. 6) Modifies requirements for reports by the Secretary on ASD activities. Adds a requirement for a report to Congress concerning young adults with ASD and the challenges related to the transition from existing school-based services to those available during adulthood.

(Sec. 7) Authorizes appropriations to carry out the developmental disabilities surveillance and research program, the education, early detection, and intervention program, and the Interagency Committee for FY2015-FY2019.

—
By Matt Carey
note: I serve as a public member to the IACC but all comments here and elsewhere are my own.

Why the “Autism Policy Reform Coalition” was wrong

1 Aug

The Autism CARES Act has passed the Senate. Assuming it is signed by President Obama it will soon become law. This extends and expands the framework set up previously under Pub. Law No. 109-416. The only vocal opposition to this bill that I saw came from within the autism communities. (ASAN was neutral, I believe). In specific, a group of small organizations with a focus on vaccines as causing autism formed the Autism Policy Reform Coalition. Autism CARES had a lot of momentum and I think even a good alternative bill would have faced difficulty replacing Autism CARES. But the proposal by the Coalition was not good.

Let’s start with the current structure, as set out by Pub. Law No. 109-416. The government is advised on the research priorities–and other topics–by the Interagency Autism Coordinating Committee (IACC). The IACC has members representing the various federal agencies which fund autism research, representatives from private organizations funding autism research, researchers, autistics and family members of autistics. It does this through drafting and updating a Strategic Plan and an annual report to Congress on autism research advances.

It is important to keep in mind that the IACC policy as well as research mandates. Examples are the IACC Statement Regarding Scientific, Practice and Policy Implications of Changes in the Diagnostic Criteria for Autism Spectrum Disorder and the IACC Letter to Secretary Sebelius on Health Coverage. So it can advise on policy as well as research. There’s just a more clear structure to what is expected in terms of research advice (the Strategic Plan is required. Policy advice is not).

In order to make the current system work there is an Office of Autism Research Coordination (OARC). These are the dedicated people who do the hard work. For example, they plan the meetings, make them work (which takes a lot of people), put together the reports, and more. OARC are a lot of hard working people doing a thankless job, without whom this process would fall apart.

That’s where we are today (at least from my point of view). Autism CARES adds an additional duty–someone in Health and Human Services will be charged with being the point person on autism. Plus some specific projects (like a report on adults and transitioning youth).

The Secretary of Health and Human Services shall designate an existing official within the Department of Health and Human Services to oversee, in consultation with the Secretaries of Defense and Education, national autism spectrum disorder research, services, and support activities

This official will “take into account” the Strategic Plan and make sure that research is not unnecessarily duplicative.

All these details sound like a lot but it’s fairly straightforward–there is the IACC advising the government, with support from OARC and now a point person in HHS overseeing the implementation of the government’s strategy. It’s simple, and it puts stakeholders (autistics, family members and researchers) directly in the stream drafting the Strategic Plan.

Some people suggest that no one listens to what the IACC has to say. To those people, I say, take a look at who the federal members are. That’s a lot of high level, decision making people who are involved with drafting the Strategic Plan and who listen to the public members every meeting. Again, the process puts stakeholders right in the mix with the decision makers. Also, most of the research being performed falls into the project areas the IACC set out in the Strategic Plan. Does the IACC have control? No. Influence? Yes.

Now consider the plan that was offered by the Autism Policy Reform Coalition. Who knows if anyone in the legislature seriously considered this proposal as a viable option to Autism CARES. Let’s start looking at why I, for one, didn’t see this as a viable option. In place of the IACC, they create two offices. The Office of Autism Spectrum Disorders Research and the Office of National Autism Policy Coordination. OK, see what they did there? They split the research and policy parts into two offices. Each will create separate Strategic Plans, each in their own area. Each Office will have need support staffs, like the IACC has OARC. So now you have four entities. Where are stakeholders in this? Well each new Office gets its own “advisory panel”. So you have six entities, assuming that the advisory panels share the support staff of the Offices they are attached to. If not, then you have eight entities.

Getting confusing?

More than just creating a lot of jobs (coming out of the autism budget), while these proposed stakeholder advisory panels have voting power in drafting the Plans put out by each office, these advisory panels are one step removed from the planning process. They are separate

Why would someone propose this? I can’t say. I can say that in this proposal the advisory groups would be majority or entirely stakeholders. So, within their own advisory panels, stakeholders would have more power to make statements without having to convince non-stakeholders to vote along.

Much as I write about autism politics, I’m no fan of politics. I would never trade the opportunity to work directly with the decision makers for the chance to make statements.

Oh, yeah, and about those stakeholders. Here’s one paragraph discussing an advisory panel:

An Advisory Panel of qualified parents or other relatives of persons with autism shall be established, modeled on the integration panel for this purpose existing within the Congressionally Directed Medical Research Program (CDMRP). As with the CDMRP panel, the integration panel to the OASDR shall have voting rights with respect to the drafting of the annual strategic plan for autism research, and with respect to grant requests presented to the OASDR for the award of autism research funds.

If your eyes glazed over with the alphabet soup, let me draw your attention to the role of autistics in the advisory panel. Or, to be more accurate, the fact that there isn’t a role for autistic adults. We are back to “the autism community is comprised of parents” philosophy.

The fairly minimal costs for the administrative overhead for this Office should be found in offsets from the existing CAA funding by redirecting non-priority dollars authorized to the NIH and HRSA under the prior versions of the CAA

“Minimal costs” and a new government entity are not terms I would put in the same sentence. More important to me, what are “non-priority dollars”? Not spelled out, but no priority is given in their document to, say, improving the lives of autistic adults. Yes, there would be money to move around since priorities would shift.

Which begs the question, what do they put as a priority?

The statute should redirect HRSA resources on autism towards research designed to create a medical model for autism management, a special patient population standard of care.

In my own opinion, a large fraction of research effort is already directed towards medical management. If we look at the autism research portfolio (here data from 2010):

2010 ASD Research Funding by IACC Strategic Plan Question – All Funders
(Total ASD funding = $408,577,276)

figure3_2010

You might say, “treatments and interventions, that’s only 17%?”. Yeah, but you gotta include biology, and that’s another 22%. Without an understanding of the biology of autism, you will never get to effective therapies. Well, maybe in some sort of Edisonian approach. However that not only takes a long time, but it’s pretty obvious people aren’t light bulbs. Edison burned out a lot of light bulbs in his search to find a good filament. Groping around blindly for treatments can lead to disastrous results in humans. Perhaps the ARPC may feel they already know the biology of autism (vaccine injury, heavy metal poisoning, oxidative stress, neuroinflammation and more). That hasn’t always worked out so well.

At present the majority of federal autism research funds go to NIH. About 80% per an article in Congressional Quarterly that just came out. The Coalition’s proposal focuses primarily on NIH. Too much in my opinion. While one could say that might be justified given their large stake, in my opinion their proposal doesn’t do a good job of coordinating with the other federal funding agencies. And there little to no coordination with private funders. Private funders account for a large amount of autism research dollars. Simons Foundation, Autism Speaks, Autism Science Foundation and more private organizations contribute a great deal to autism research. In 2010, the Simons Foundation alone was the second largest funding agency after NIH. Yes, a larger contribution than any other federal agency than the NIH.

The Coalition further proposed assigning the funds for the NIH to their proposed Office of Autism Spectrum Disorders Research. It sounds like this would give more power to the advisory groups, but without some framework whereby this Office manages the funds, it’s just bookkeeping.

The Coalition presented themselves as wanting to delay Autism CARES to make some small but helpful changes. They were neither small nor helpful.

I had hoped to write something before Autism CARES passed. While it’s pretty much academic now (and likely was even before Autism CARES passed as I don’t think the Coalition had much traction), it’s worth reviewing their proposal.

—
By Matt Carey

note: I serve as a public member to the IACC but all comments here and elsewhere are my own.

Call your senators, ask to bring the Autism CARES ACT to the floor

29 Jul

The bill which authorizes funding for the US federal government’s autism research effort expires this September. The re authorization bill is called the Autism CARES Act (Autism Collaboration, Accountability, Research, Education, and Support Act of 2014). The U.S. House of Representatives passed the bill and it passed the Senate HELP Committee. If it passes the Senate and gets signed by the President (pretty likely) it’s a law.

It is now waiting to be brought to the floor of the Senate for a vote.

The last time the research authorization bill was passed (the Combating Autism Reauthorization Act), the reauthorization happened at the last minute: September 30th. A new Committee to advise and plan autism research didn’t start work until the next July. This IACC met for the last time a few weeks ago, so if events go as before it will be a full year without stakeholder input on autism research. If Autism CARES passes soon, the government can start working on a new committee earlier and the delay will hopefully be shorter.

The Senate will go on recess at the end of the week (by law they have the month of August off). So now would be a good time to remind them to bring this to the floor and get it moving.

Autism Speaks has set up a handy web app to help you do this: http://bit.ly/SensCall. Click it, input a little information and it calls you back and sets up the call for you to your senators’ offices.

FaxZero lets you send 5 faxes a day from the web and they have a handy web interface to help guide you to your own (or any other senator). That is http://faxzero.com/fax_senate.php

Want to fax everyone in the senate in one fell swoop? For about $10, http://www.faxyouropinion.com/senators will send the same message to each senator. Don’t worry, they change the “Dear….” line for you.

Want to send those 5 free faxes from FaxZero and wonder who might be someone worth faxing? Well, there’s a set of groups who have been trying to block Autism CARES. These groups set up a list of targeted senators (all these groups are in the “vaccines cause autism” persuasion, 3 directly associated with Andrew Wakefield…yeah, sit back, do nothing and Andrew Wakefield will help shape U.S. autism policy for you. Now that’s a cheery thought!)

Here’s their list.  (Their staffs are very nice.  One Senator goes straight to voicemail, though).

Senator Rand Paul in Kentucky

Senator Ted Cruz in Texas

Senator Mike Lee in Utah

Senator Tom Coburn in Oklahoma

Senator Roy Blunt in Missouri

Senator Ron Johnson in Wisconsin

Senator Jim Risch in Idaho

Calls only take a minute. You can just call and say, “I’m autistic and I want Autism CARES brought to the floor. Please support it” or “I’m the parent of an autistic kid and I want Autism CARES brought to the floor. Please support it”. Or you can say “Please kill the Autism CARES Act”. It’s your Senate. Use it.

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By Matt Carey

Note: I serve as a public member to the present IACC, the committee which is authorized by the Combating Autism Act. My comments here and elsewhere are always my own.