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IACC meeting Agenda for 9 April, 2013

9 Apr

Tomorrow is a meeting of the U.S. Interagency Autism Coordinating Committee. Full information is on her IACC website. This includes the agenda.

9:00 AM Welcome and Roll Call    
Thomas Insel, M.D.   
Director, National Institute of Mental Health (NIMH) and Chair, IACC   
Susan Daniels, Ph.D.
Acting Director, Office of Autism Research Coordination, NIMH and Executive Secretary, IACC   

9:05  Update from Administration for Children and Families   
Linda Smith
Deputy Assistant Secretary and Inter-Departmental Liaison for Early  Childhood Development Administration for Children and Families (ACF)   

9:15 Changes in Prevalence of Parent-reported Autism Spectrum Disorder in School-aged U.S. Children: 2007 to 2011-2012     
Stephen Blumberg, Ph.D. 
Acting Associate Director for Science Division of Health Interview Statistics National Center for Health Statistics   Centers for Disease Control and Prevention (CDC)     
Michael Kogan, Ph.D 
Director, Office of Epidemiology and Research   Health Resources and Services Administration (HRSA)

9:45  Project SEARCH at the National Institutes of Health (NIH)   
Maureen Gormley, M.P.H., M.A., R.N.  
Chief Operating Officer, NIH Clinical Center 

10:15  Break 

10:30  Panel on Minimally Verbal Children with Autism    

10:30  NIH Autism Centers of Excellence Update 

Alice Kau, Ph.D.
Program Director, Autism Spectrum Disorders Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) 

10:40  NIH Workshop on Nonverbal School-Aged Children with Autism 

Connie Kasari, Ph.D. 
Professor of Psychological Studies in Education and Psychiatry University of California, Los Angeles 
Helen Tager-Flusberg, Ph.D.
Director, Developmental Science Program Boston University 

10:55 Communication Growth in Minimally Verbal Children with Autism 
Connie Kasari, Ph.D.
Professor of Psychological Studies in Education and Psychiatry University of California, Los Angeles  

11:20 Minimally Verbal ASD: From Basic Mechanisms to Innovative Interventions 
Helen Tager-Flusberg, Ph.D.
Director, Developmental Science Program Boston University 

11:45 Q&A with Committee 

12:00  Autism NOW Website 
Katherine Cargill-Willis
Program Specialist Administration on Intellectual and Developmental Disabilities (AIDD) Administration for Community Living (ACL)   

Amy Goodman, Kevin Wenzel, and Karen Wolf-Branigin  
The Arc

12:20 PM Lunch 

1:00  Oral Public Comments Session 

1:30  IACC Member Discussion of Public Comments  

2:00   IACC Business     

2:00 Science Update       
Thomas Insel, M.D.    
Director, National Institute of Mental Health (NIMH) and Chair, IACC     

2:10 Introductory Comments and OARC/IACC Update 
Thomas Insel, M.D.    
Director, NIMH and Chair, IACC    
Susan Daniels, Ph.D.   
Acting Director, Office of Autism Research Coordination, NIMH and  Executive Secretary, IACC 

2:25 Update from Subcommittee for Basic and Translational Research  

Question 1 Planning Group 
DSM-5 Planning Group   

2:45 Update from Subcommittee for Services Research and Policy 

3:00 Break 

3:15 Committee Discussion     

5:20  Wrap-Up 

5:30  Adjournment

I am extremely pleased to see this focus on minimally verbal autistics in this meeting. This is a focus area I and others have asked for.


By Matt Carey

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

IACC Recommends Public and Private Insurance Coverage of Early Behavioral Interventions for Children with Autism

8 Apr

The U.S. Interagency Autism Coordinating Committee (IACC) sent a letter recently to Kathleen Sebelius, the Secretary of Health and Human Services calling for public and private health insurance coverage for behavioral interventions for autistic children. The letter and the press release are below:

IACC Recommends Public and Private Insurance Coverage of Early Behavioral Interventions for Children with Autism (PDF – 79 KB)

Today the Interagency Autism Coordinating Committee (IACC) submitted a letter to the Secretary of Health and Human Services, Kathleen Sebelius, recommending public and private insurance coverage of early behavioral interventions for children with autism spectrum disorder (ASD). The Committee developed the recommendations following discussions in early 2013 concerning the Affordable Care Act (ACA). While the IACC heard about the gains made toward meeting the needs of people with ASD through the first steps of the implementation of the Act, concerns were also voiced by the community about remaining gaps, including the lack of access to insurance coverage for early behavioral interventions.

As a part of the implementation of the ACA, States are in the process of defining “essential health benefits” (EHB) that will be covered by private insurers. The IACC was particularly concerned about the benefit for “mental health and substance use disorder services, including behavioral health treatment.” Under this benefit, the Committee considered it to be critically important that the benchmark plans in all States provide the robust and consistent coverage for behavioral therapy that has been shown to be effective for children with ASD.

Currently, only approximately half of States have decided to offer private insurance plans that provide autism-specific behavioral interventions, while others are still in the process of making decisions. Even less is known about what type of coverage for early behavioral interventions may be available through Medicaid, a publicly-funded insurance program that is the single largest funder of medical care for children with ASD.

In light of increasing evidence for the effectiveness of early interventions, including a recent study funded by the Health Resources and Services Administration (HRSA)1 and a Cochrane analysis,2 the IACC drafted a letter to Secretary Sebelius recommending support for coverage of and broad access to early behavioral interventions for children diagnosed with ASD, including children covered under both private and publicly-funded (Medicaid) health plans. The IACC also recommended a Federal minimum standard of autism coverage through the essential health benefits for all health plans offered in the individual and small group markets and that minimum coverage include early intervention for children with ASD at a level of intensity indicated by the evidence.

The IACC considers access to early behavioral interventions for those with autism to be a critically important issue and hopes that this letter will provide helpful information to Secretary Sebelius as well as to the larger community as they consider the best ways to address the needs of all people with disabilities. The Committee believes that broadening access to evidence-based early behavioral interventions has the potential to improve outcomes and the quality of life for people with autism and their families.

References
1 Maglione MA, Gans D, Das L, Timbie J, Kasari C; Technical Expert Panel; HRSA Autism Intervention Research – Behavioral (AIR-B) Network. Nonmedical interventions for children with ASD: recommended guidelines and further research needs. Pediatrics. 2012 Nov;130 Suppl 2:S169-78. [PMID: 23118248]

2 Reichow B, Barton EE, Boyd BA, Hume K. Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD). Cochrane Database Syst Rev. 2012 Oct 17. [PMID: 23076956]

***

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 people with ASD, parents, advocates, 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.


By Matt Carey

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

Via Autistic Hoya: Judge Rotenberg Center Survivor’s Letter

10 Feb

The Judge Rotenberg Center (JRC) is a school for autistic students which incorporates aversives into the program for some of their students. These aversives are electric shocks delivered via remote-control to packs the students wear 24/7.

The JRC has been the focus of a great deal of criticism. To put it mildly. JRC has repeatedly described the shocks in relatively mild terms. Autistic Hoya (whose blog I highly recommend) has an article which includes a letter from a JRC survivor. I do not have permission from the author to copy the letter here, so I will send you to her site. With the warning that this is not an easy letter to read:

Judge Rotenberg Center Survivor’s Letter


By Matt Carey

Princeton families make $1.5M donation to Rutgers to study adult autism

2 Feb

NJ.com is reporting Princeton families make $1.5M donation to Rutgers to study adult autism. Two families donated $750,000 each, matched by another gift to the university to endow a chair in the psychology department:

Located at the Graduate School of Applied and Professional Psychology, the Karmazin and Lillard Chair in Adult Autism will pay for research and training future professionals to work in the growing field.

I find it very encouraging that the donors are parents of adolescent autistics.


By Matt Carey

A Decade of Left Brain/Right Brain

1 Jan

2013 marks the 10 year mark for Left Brain/Right Brain. The blog actually started in June, as I recall, but June of 2003. The blog started out as a place for Kev Leitch to write about his life and his work. Most of his writing about his life was about events pertaining to his autistic child. I found the blog a few years later and it had already evolved significantly from its early days. It has evolved since then as well.

In a time when the online and public discussion was dominated by groups of parents willing to characterize autistics as “train wrecks” and “empty shells” who had “descended into the hell of autism”, Kev stood up to counter the message. Kev put together the autism hub to band together autistics and allies who were writing from a perspective of respect. Kev hosted an online forum and at one point this blog was home to about 10 writers, autistic and allies.

Kev has moved on to other ventures. I wish him well. He did a lot of good here.


By Matt Carey

IACC conference call this week

21 Dec

Earlier this week the IACC met via conference call to finalize the Strategic Plan updates for 2012.  A 2-day workshop on the updates had to be cancelled due to hurricane Sandy.  Below are just a few fragments of discussions that occurred during the meeting.

Drafts of the updates can be found on the IACC’s website. And final versions will be posted as soon as they are completed.

The meeting started with a discussion of whether the IACC should issue a statement following the speculation that the shooter at Newtown Connecticut was autistic.  Such a statement has been prepared and will be released shortly.

One public comment noted the lack of support for a family trying to navigate the extra hurdles a family with disabilities faced following Sandy.  Some of the federal members noted that there are resources specifically focused on vulnerable populations. I am trying to get more specifics on that now.

Each question of the Plan was discussed and modified, sometimes with word smithing and sometimes with more extensive edits.  The question on treatments in particular had a great deal of discussion and edits were prepared real-time by OARC staff. There is a good team supporting IACC and it was impressive to see them continue to keep making notes on the discussion while preparing significant edits for approval during the call.

One question that came up during the discussions was that of immigrant populations and autism prevalence. There has been much discussion of the Somali-American community and autism and Idil Abdul spoke of the concerns of that community. Two studies had come out in then past year, one from Sweden and one from the Netherlands, suggesting higher autism prevalence for immigrant communities in those countries.  This highlights the fact that we don’t have autism prevalence data for most of the world.  To my knowledge there are a few from northern Africa, possibly none from sub-Saharan Africa and South America, little or none from south Asia.

The UK adult autism prevalence study was discussed and the fact that little is known about the adult population in the U.S..

Obviously much more was discussed in the whole day meeting.  Much of that can be found in the draft documents linked to above.


By Matt Carey

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

Autism, Empathy, and Violence: Asperger’s Does Not Explain Connecticut Shooting

17 Dec

Slate has picked up Emily Willingham’s article on the Newtown shootings, as Autism, Empathy, and Violence: Asperger’s Does Not Explain Connecticut Shooting. The URL says a lot:

http://www.slate.com/blogs/xx_factor/2012/12/17/asperger_s_and_newtown_school_shooting_autistic_does_not_mean_violent.html

Autistic does not mean violent.

It is very heartening to see large media outlets picking up on this message to counter speculation which started with the unconfirmed report that the shooter was autistic.

The article originally appeared as Autism, empathy, and violence: One of these things doesn’t belong here on Dr. Willingham’s blog EmilyWillinghamPhD.com and at the Thinking Person’s Guide to Autism.


By Matt Carey

Autism Rights Group: Asperger’s Does Not Explain Newtown School Massacre

17 Dec

CBS New York has quotes Autism Rights Watch on the Newtown shootings. In Autism Rights Group: Asperger’s Does Not Explain Newtown School Massacre CBS cites the ARW press release. Including this paragraph:

“The search for answers should not be a search for a scapegoat. Autism is no excuse or explanation to evil. Being ‘autistic,’ ‘odd,’ ‘awkward,’ ‘camera shy,’ a ‘nerd’ and ‘uncomfortable with others’ does not cause a person to become a mass murderer,” the organization said in the release. “Autistic persons are more likely to be victims, rather than perpetrators of violence. Autism Rights Watch urges the public and the media outlets not to stigmatize the autistic persons and their families. They already are facing segregation and prejudices on a daily basis.”

The full press release can be found as ARW grieves for the families after Newtown, CT shooting


By Matt Carey

AANE Statement on the tragedy in Newtown, CT

16 Dec

The Asperger’s Association of New England (AANE) has issued a statement: AANE Statement on the tragedy in Newtown, CT. The statement begins:

December 16, 2012 — At the Asperger’s Association of New England, we share the horror and sadness of people across the world. The shootings in Newtown, Connecticut, were a terrible and incomprehensible act of violence. We convey our deepest sympathy to the victims, their families and friends, and their community.

The AANE acknowledges the media speculation that the shooter had Asperger syndrome, including this statement:

Our overwhelming concern is for the families of the victims through their deep, enduring grief and devastation. We hope too that the conversation around Adam Lanza will be thoughtful and considerate of people who have Asperger syndrome or other forms of autism and their families

AANE is offering services of their staff:

Discussing this tragedy is challenging for families and very upsetting for children who have Asperger syndrome. Our staff is available to give advice or support relating to this issue during normal business hours: (617) 393-3824

.

The full statement can be found at: AANE Statement on the tragedy in Newtown, CT


By Matt Carey

My sympathies and apology to the good people of Newtown Connecticut

16 Dec

When I heard news of the murders in Newtown Connecticut I, like everyone, was shocked and saddened. Those are very weak words for the emotions I felt. I can offer sympathy, condolences and some understanding of what the good people of Newtown feel, but I can only imagine their grief at this time.

The autism communities rarely speak with one voice but this time there has been a unity of support and sympathy from all corners.

There has been a second message as well.  Not for the people of Newtown, but for the press reporting on this story. A message to treat autistics with fairness and accuracy. That whether the shooter was autistic or not, to keep in mind that autism is not the same as violent. That this young man in no way represents autism any more than he represents your community.

For intruding on your grief to interject that message, I apologize. I believe the individuals and groups who have stepped forward with these messages have done so with respect and only done so this early because of the need to head off a damaging theme we have seen emerge in the past from other shootings.

I have tried to highlight those messages here on this site. I have strived to do so with as much respect as I possible.

I wish you well in the time ahead and hope our support outweighs our intrusion.


By Matt Carey

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