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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.

United Nations statements on Autism Awareness Day

4 Apr

The United Nations released two statments on April 2nd, Autism Awareness day. Those statements, from the U.N. Secretary General and the U.N. as a whole are below.

Secretary-General, in Message, Says Vital to Work Hand-in-Hand with Persons with Autism to Help Cultivate Their Strengths, Address Their Challenges

Following is UN Secretary-General Ban Ki-moon’s message for World Autism Awareness Day, 2 April:

World Autism Awareness Day has succeeded in calling greater international attention to autism and other developmental disorders that affect millions of people worldwide.

The current session of the United Nations General Assembly has adopted a new resolution on this issue, demonstrating a commitment to help affected individuals and families. The resolution encourages Member States and others to strengthen research and expand their delivery of health, education, employment and other essential services. The Executive Board of the World Health Assembly will also take up the subject of autism spectrum disorders at its forthcoming session in May.

This international attention is essential to address stigma, lack of awareness and inadequate support structures. Current research indicates that early interventions can help persons with autistic conditions to achieve significant gains in their abilities. Now is the time to work for a more inclusive society, highlight the talents of affected people and ensure opportunities for them to realize their potential.

The General Assembly will hold a high-level meeting on 23 September to address the conditions of more than 1 billion persons with disabilities, including those with autism spectrum disorders. I hope leaders will seize this opportunity to make a meaningful difference that will help these individuals and our human family as a whole.

Let us continue to work hand-in-hand with persons with autism spectrum disorders, helping them to cultivate their strengths while addressing the challenges they face so they can lead the productive lives that are their birthright.

Films, Panel Discussions, Live Performances among Events to Mark Observance of World Autism Awareness Day at Headquarters, 2 April

A growing number of countries are heralding a new call for involvement in addressing autism and other developmental disorders that affect millions of individuals and their families and societies worldwide as the United Nations and communities around the globe mark World Autism Awareness Day on 2 April with commemorative events including film screenings, panel discussions and live performances.

“This international attention is essential to address stigma, lack of awareness and inadequate support structures,” said United Nations Secretary-General Ban Ki-moon in a message to mark the Day. “Current research indicates that early interventions can help persons with autistic conditions to achieve significant gains in their abilities. Now is the time to work for a more inclusive society, highlight the talents of affected people and ensure opportunities for them to realize their potential.” (See Press Release SG/SM/14890-OBV/1195 of 20 March.)

In December 2007, the United Nations General Assembly unanimously adopted resolution A/RES/62/139, declaring 2 April World Autism Awareness Day to highlight the need to help improve the lives of children and adults who suffer from the condition, so they can lead full and meaningful lives. The rate of autism — a lifelong developmental disability that manifests itself during the first three years of life — is high in all regions of the world, and it has a tremendous impact on children, their families, communities and societies. The number of children and adults with autistic conditions continues to rise across every nation and social group.

“Let us remind ourselves that together — whether we represent Governments, civil society, the private sector or the United Nations itself — we can make a significant difference in our collective goal to create a more caring and inclusive world for people with autism,” said Peter Launsky-Tieffenthal, Under-Secretary-General for Communications and Public Information.

Children and adults with autism face major barriers associated with stigma and adverse discrimination, lack of access to support, discrimination, abuse and isolation, all of which violate their fundamental human rights, according to a General Assembly resolution (document A/RES/67/82) sponsored by Bangladesh and adopted in December 2012. Giving young children the early and correct treatment is crucial for improving their prognosis and giving them the chance to maximize their potential, according to the text.

Those issues will be explored during two panel discussions, co-organized by the United Nations Department of Public Information and the Permanent Mission of the Philippines, to be held at Headquarters on 2 April from 1:15 p.m. to 6 p.m. in Conference Room 2 of the North Lawn Building. Panellists addressing their respective themes, “Finding the ability in the disability of autism” and “Successful transition to adulthood”, will be Stephen Shore, Professor of Special Education at Adelphi University; Elaine Hall, founder of The Miracle Project, a groundbreaking theatre arts programme for autistic individuals profiled in the award-winning HBO documentary AUTISM: The Musical; Neal Katz, a teenager with autism who was featured in that film; Fazli Azeem from Pakistan, a graphic design Fulbright Scholar in Boston who is on the autism spectrum; and Idil Abdull from Somalia, who has a child with autism.

That segment of the event will feature musical performances by Talina and The Miracle Project. It will include performers with autism and remarks by Mr. Launsky-Tieffenthal, who will also open a book-signing event at the United Nations Bookstore from 11:30 a.m. to 12:30 p.m. with Stephen Shore, author of Beyond the Wall.

While public awareness remains low, global awareness of autism is growing. The new General Assembly resolution demonstrates a commitment to helping affected individuals and families, and encouraging Member States and others to strengthen research and expand delivery of health, education, employment and other essential services.

A related panel discussion titled “Addressing the socioeconomic needs of individuals, families, and societies affected by autism spectrum disorders and other developmental disorders” will be held on the new resolution’s implementation. It is co-organized by the Permanent Missions of Bangladesh, Bahrain, India, Qatar, Saudi Arabia and the United States, in collaboration with the Department of Public Information and the Department of Economic and Social Affairs. It will take place from 10 a.m. to 1 p.m. in Conference Room 2 of the North Lawn Building. On 4 April, the Permanent Mission of Israel will host a screening of the film This Is My Child at 1:15 p.m. in Conference Room E of the North Lawn Building.

Throughout its history, the United Nations has promoted the rights and well-being of persons with disabilities, including children with disabilities. In 2006, the General Assembly adopted the United Nations Convention on the Rights of Persons with Disabilities, which sought to change the view of persons with disabilities as “objects” of charity to seeing them as “subjects” — capable of claiming their rights and making life decisions on the basis of their own free and informed consent — and as active members of society, thus reaffirming the fundamental principle of universal human rights for all.

This year, the World Health Assembly will take up the subject of autism spectrum disorders at its Executive Board session in May, while the General Assembly will hold a high-level meeting on 23 September to address the condition of more than 1 billion persons with disabilities, including those with autism spectrum disorders.

Mr. Ban hopes leaders attending the meeting will “seize this opportunity to make a meaningful difference that will help these individuals and our human family as a whole”. The Secretary-General says: “Let us continue to work hand in hand with persons with autism spectrum disorders, helping them to cultivate their strengths while addressing the challenges they face so they can lead the productive lives that are their birthright.”

Contacts: Fred Doulton, tel.: +1 212 963 4466 or e-mail: doultonf@un.org; and Eileen Travers, Department of Public Information, tel.: +1 212 963 2897 or e-mail: travers@un.org.


By Matt Carey

HHS Secretary Kathleen Sebelius Statement on National Autism Awareness Month

4 Apr

The U.S. Secretary of Health and Human Services, Kathleen Sebelius, posted the following statement on April 2nd, in honor of Autism Awareness Month:

Every April during National Autism Awareness Month, we recognize the special challenges faced by those living with Autism Spectrum Disorders (ASD) and refocus our efforts on the best ways to support them and their families.

Autism is a developmental disability characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication, and repetitive behaviors. The latest figures from the Centers for Disease Control and Prevention (CDC) and the Health Resources and Services Administration (HRSA) leave no doubt that autism is a critical public health issue that deeply affects the lives of millions of Americans.

Research sponsored by the National Institutes of Health (NIH), CDC, and HRSA has advanced our understanding of risk factors underlying the development of ASD as well as supported the development and effective deployment of tools for early detection and intervention. Screening at younger ages is increasingly helping children to get the most effective treatments as soon as possible.

Today, NIH announced it has awarded $5.3 million in initial funding to two new recipients of the Autism Centers of Excellence (ACE) program. Eleven ACE centers around the country are now funded to support collaborative, multi-disciplinary science aimed at exploring the causes and identifying the most effective treatments for ASDs.

There is also a growing understanding of the significant needs people with ASD face, including support for education, employment and housing to allow them to fully participate in community life. Through the recent formation of the Administration for Community Living, the Department of Health and Human Services has strengthened its commitment to maximizing health, well-being, and independence for those with ASD and their families and caregivers.

The Affordable Care Act also is helping to meet the health care needs of those on the autism spectrum. Because of the health care law, insurers are not allowed to exclude children with autism based on their pre-existing condition. Beginning in 2014, it will be illegal for an insurer to discriminate against anyone because of a pre-existing condition or to charge more because of it. Also because of the health care law, children are now able to remain on their parents’ health plan until the age of 26. For young adults with autism and their families, that means more options and greater peace of mind.

Among the preventive services that health insurance plans must now cover with no out-of-pocket cost is autism screening for children at 18 and 24 months.

This month, let us renew our efforts to make advances through research and effective services and supports that will enhance the lives of the people and families—our children, friends, and neighbors—who struggle every day with autism.

For more information about ASD, see www.hhs.gov/autism.

Learn more about HHS and interagency activities related to ASD at www.iacc.hhs.gov.

For more information about the Affordable Care Act, see www.HealthCare.gov.


By Matt Carey

Presidential Proclamation — World Autism Awareness Day, 2013

4 Apr

I know I am late with the Autism Day announcements, but I thought it valuable to post some of these now. Here is a proclamation by President Obama on World Autism Awareness day:

BY THE PRESIDENT OF THE UNITED STATES OF AMERICA

A PROCLAMATION

Today, public health officials estimate that 1 in every 88 children in America is growing up on the autism spectrum. It is a reality that affects millions of families every day, from the classroom to the job market. And while our country has made progress in supporting Americans with autism spectrum disorders (ASDs), we are only beginning to understand the factors behind the challenges they face. On World Autism Awareness Day, we recommit to helping individuals on the autism spectrum reach their full potential.

To achieve that goal, we need a health care system that works for children and adults with ASDs. The Affordable Care Act prevents insurers from denying coverage to children on the autism spectrum, and it ensures new health plans must cover autism screenings at no cost to parents. Beginning in 2014, the Act will make it illegal for insurance companies to discriminate against men and women with preexisting conditions, including ASDs. And looking ahead, my Administration is investing in medical research that can help unlock tomorrow’s breakthroughs in autism detection, intervention, and education.

Leveling the playing field for Americans on the autism spectrum also takes commitment in our schools. That is why we are advancing initiatives to help students with ASDs get a good education free from discrimination and undue hardship. And it is why we are making sure that education can lead to meaningful employment by supporting vocational rehabilitation programs and opening higher education to more people on the autism spectrum.

All Americans should have the chance to live full, independent lives and follow their talents wherever they lead. This month, we recognize Americans with ASDs who are walking through doors of opportunity, and we recommit to opening them wider in the years ahead.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim April 2, 2013, as World Autism Awareness Day. I encourage all Americans to learn more about autism and what they can do to support individuals on the autism spectrum and their families.

IN WITNESS WHEREOF, I have hereunto set my hand this first day of April, in the year of our Lord two thousand thirteen, and of the Independence of the United States of America the two hundred and thirty-seventh.

BARACK OBAMA


By Matt Carey

IACC Meeting next Tuesday (April 9)

4 Apr

The U.S. Interagency Autism Coordinating Committee will meet next Tuesday, April 9, at the NIH campus in Bethesda Maryland. The agenda reads

The committee will discuss autism related issues and will host activities in recognition of Autism Awareness Month and World Autism Awareness Day.

The meeting is to be held at

The National Institute of Mental Health
The Neuroscience Center
6001 Executive Boulevard, Conference Rooms C and D
Rockville, Maryland 20852

The meeting will also be webcast live.

More information can be found at the IACC website.


By Matt Carey

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

Robert Saylor’s death ruled homicide

19 Feb

A gentleman with Down Syndrome went to the movies recently. When the movie was finished, he decided to stay to see it again. In other words, he did not get out of his seat; he did not buy a new ticket. The theater has security guards. Three of them.  Off duty police who were in police uniforms.  All three were called in to deal with this gentleman who would not get out of his seat.

The gentleman, Robert Saylor, died of asphyxiation.

Yes, for “resisting arrest” the off-duty police used enough force to result in the death of the gentleman. Because he wouldn’t buy an $11 ticket.

More at:

Autopsy finds that Md. man with Down syndrome died of asphyxia while in police custody

Robert Saylor death ruled a homicide


By Matt Carey

NCD Response to the State of the Union Address

18 Feb

The U.S. National Council on Disability (NCD) has issued a response to the State of the Union address presented by President Obama recently. I am presenting it in its entirety below:

In the annual State of the Union address, President Barack Obama addressed several policy areas of importance to the 56 million Americans with disabilities and their families. As the independent federal agency which advises the President and Congress on disability policy, the National Council on Disability (NCD) applauds the significant agenda proposed by the President and recommends the following actions to guarantee full participation and integration in all aspects of society for Americans with disabilities.

The President called for an increase in the minimum wage to $9.00 an hour by stating “in the wealthiest nation on Earth, no one who works full-time should have to live in poverty.”

NCD agrees. In 2010, statistics released by the U.S. Census Bureau revealed that nearly 28 percent of Americans with disabilities aged 18 to 64 live in poverty.

Today, hundreds of thousands of Americans with disabilities earn less than minimum wage under a little-known relic of employment policy that assumed people with disabilities were not capable of meaningful, competitive employment.

As the President said, “America is not a place where chance of birth or circumstance should decide our destiny. And that is why we need to build new ladders of opportunity into the middle class for all who are willing to climb them.”

Twenty three years after the passage of the Americans with Disabilities Act, the time has come for minimum wage to be available to everyone who works, including Americans with disabilities. Over a quarter of a million Americans with disabilities work under the Fair Labor Standards Act 14 (c) program resigning people with disabilities to earning less than minimum wages and the poverty, isolation and segregation that often results.

In our August 2012 Report on Subminimum Wage and Supported Employment, NCD recommended a gradual phase out of the 14 (c) program. The ladders our nation builds to opportunity must be accessible to every American – including those with disabilities. As America works toward increasing minimum wage, implementation of a comprehensive set of supports and targeted investments in integrated employment services to make it possible for people with disabilities to rise to the same heights as other Americans must also be assured.

In addition, the President announced a non-partisan commission to improve voting in America by emphasizing “our most fundamental right as citizens: the right to vote. When any Americans … are denied that right … we are betraying our ideals.” A Fact Sheet on the Voting Commission issued by the White House lists voters with disabilities and “physical barriers” among the issues to be corrected.

NCD appreciates inclusion of the difficulties faced by voters with disabilities as part of the Commission’s work. A Government Accountability Office (GAO) report found as recently as 2008, only 27 percent of polling places were barrier-free. In fact, the Federal Election Commission confirmed that, in violation of state and federal laws, more than 20,000 polling places across the nation are inaccessible, depriving Americans with disabilities of their fundamental right to vote. People with disabilities and senior citizens are particularly disenfranchised by long lines at polling places and by constraints on and, in some places, the discontinuation of early voting.

To address this disparity, NCD has been collecting the experiences of voters with disabilities in the November 2012 General Election from across the nation in coordination with the National Disability Rights Network and EIN SOF Communications. NCD will issue a report on our findings later this year.

NCD urges the Voting Commission to consider the findings of our upcoming report and to include voters with disabilities on their Commission.

The President also stressed the importance of key reforms to realize cost savings in the Medicare program, including the shift from a fee for service payment system to a managed care model designed to pay for performance. NCD understands the importance of shifting to payment models that both manage costs and increase quality for our health care financing infrastructure. However, it is crucial that people with disabilities and seniors retain the ability to have their needs met.

Over the last two years, NCD has conducted a detailed exploration of managed care within Medicaid, issuing comprehensive recommendations on due process safeguards, program design, performance measures and other facets of responsible managed care frameworks that consider the needs of Americans with disabilities without causing adverse consequences on the quality of care we receive. As the Administration considers various measures to enhance health care quality while controlling costs, NCD stands ready to apply this expertise to Medicare reforms.

As President Obama affirmed, “the responsibility of improving this union remains the task of us all.” NCD looks to continuing its role in developing and promoting robust disability policies in close collaboration with the Administration, Congress and the public.

– Jeff Rosen, Chairperson
On behalf of the National Council on Disability


By Matt Carey

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

IACC to hear about Minnesota Somali Project, Optimal Outcomes and National Children’s Study

28 Jan

The U.S. Interagency Autism Coordinating Committee (IACC) meets tomorrow (January 29th). The agenda is listed online and below.

The committee and the public will hear updates on the Minnesota Somali Autism Project–a project to explore whether there is a high prevalence of autism in the Minnesota Somali community and, if so, why. The autism prevalence in Puerto Rico ranks high for the U.S., even though the territory population is largely Hispanic and Hispanics typically have a low reported autism prevalence in the U.S.. An update on the autism prevalence in Puerto Rico will be presented. A recent study on individuals who achieved what the authors refer to as “optimal outcomes” will be discussed. Also, a study of health outcomes in children with autism and their families will be presented.

The IACC will also discuss plans for moving forward. There are many areas I would like to see some focus applied to. But three I have proposed and hope to discuss are (1) the needs specific to children and adults with autism and intellectual disability and/or communication difficulty and (2) difficulties in delivery of medical services to autistics and (3) autism and epilepsy. It is too late for comments to be included in the record for this meeting, but if you have opinions of where autism research and policy should be moving towards, send the IACC comments at IACCPublicInquiries@mail.nih.gov.

Here is tomorrow’s agenda:

10:00 a.m. Welcome, Roll Call and Approval of Minutes
Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC

10:05 Science Update
Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC

10:20 Round Robin

10:50 Centers for Disease Control and Prevention (CDC) Minnesota Somali Project Update
Amy Hewitt, Ph.D.
Director, Research and Training Center on Community Living
University of Minnesota

Mashalyn Yeargin-Allsopp, M.D.
Chief, Developmental Disabilities Branch, National Center on Birth Defects and Developmental Disabilities (NCBDDD)
Centers for Disease Control and Prevention

11:20 Update on Autism Prevalence in Puerto Rico
Jose Cordero, M.D.
Dean, Graduate School of Public Health
University of Puerto Rico
Member, IACC

11:35 Lunch

1:00 p.m. Oral Public Comments

1:30 Optimal Outcomes in Individuals with a History of Autism
Deborah Fein, Ph.D.
University of Connecticut
Board of Trustees Distinguished Professor Department of Psychology
Department of Pediatrics

2:00 Study of Health Outcomes in Children with Autism and their Families
Anjali Jain, M.D.
The Lewin Group

Craig Newschaffer, Ph.D.
AJ Drexel Autism Institute, Drexel University

2:30 National Children’s Study Update
Alan Guttmacher, M.D.
Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development
Member, IACC

2:50 Break

3:05 IACC Business
Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC

Susan A. Daniels, Ph.D.
Acting Director, Office of Autism Research Coordination
Executive Secretary, IACC

•2012 Strategic Plan Update
•2013 Strategic Plan Update Process
•2012 Summary of Advances
•2011-2012 Portfolio Analysis
•Other Activities

4:15 Public Comments Discussion Period

4:45 Wrap-Up

5:00 Adjournment


By Matt Carey

Note: I serve as a public member to the IACC. However, all comments and opinions, here and elsewhere are my own.
Note: I made small edits after I published this article to include the third area I would like to see get greater focus.

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