IACC Full Committee Meeting - November 21, 2008

Topic	Topic Description
Date:	Friday, November 21, 2008
Time:	9:00 a.m. to 4:00 p.m. Eastern Time
Agenda:	To finalize the Strategic Plan for Autism Spectrum Disorder (ASD) research and discuss services and supports for individuals and families affected by ASD.
Place:	Ronald Reagan Building and International Trade Center The Rotunda Room 1300 Pennsylvania Ave. NW Washington, DC 20004 Attendance in person at the meeting will be limited due to space available.
Registration:	To attend the meeting in person, please register at the website below: http://iacc.nimhmeetingsupport.com
Remote Access Information:	Conference Call and Webinar Webinar Registration and access Information: https://www1.gotomeeting.com/register/471694223 To access the conference call: Dial-in number for the USA/Canada: 888-455-2920 International Dial-in Number: 212-287-1838 Access code: 3857872
Contact Person:	Ms. Lina Perez Office of Autism Research Coordination Office of the Director National Institute of Mental Health, NIH 6001 Executive Boulevard, NSC, Room 8203A Rockville, Maryland 20892-9669 Phone: 301-443-6040 Fax: 301-480-4415 IACCPublicInquiries@mail.nih.gov
Please Note:	Any member of the public interested in presenting oral comments to the Committee should notify the Contact Person listed on this notice at least 10 days in advance of the meeting. Interested individuals and representatives of organizations should submit a letter of intent, a brief description of the organization represented, and a written copy of the oral presentation in advance of the meeting. Only one representative of an organization will be allowed to present oral comments and presentations will be limited to a maximum of five minutes. Both printed and electronic copies are requested for the record. In addition, any interested person may file written comments with the Committee by forwarding the statement to the Contact Person listed on this notice. The statement should include the name, address, telephone number and when applicable, the business or professional affiliation of the interested person. The meeting will be open to the public through a conference call phone number and a web presentation tool on the Internet. Individuals who participate using these electronic services and need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request at least two weeks prior to the meeting. Members of the public who wish to participate using the conference call phone number will be able to listen to the meeting but will not be heard. If you experience any technical problems with the conference call-in phone number or web presentation tool, please contact GoToWebinar at 800-263-6317. To access the web presentation tool on the Internet, the following computer capabilities are required: A) Internet Explorer 5.0 or later, Netscape Navigator 6.0 or later or Mozilla Firefox 1.0 or later; B) Windows® 2000, XP Home, XP Pro, 2003 Server or Vista; C) Stable 56k, cable modem, ISDN, DSL or better Internet connection; D) Minimum of Pentium 400 with 256 MB of RAM (Recommended); E) Java Virtual Machine enabled (Recommended).

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Time	Event
8:00 a.m.	Registration
9:00 a.m.	Call to Order and Opening Remarks Thomas Insel, M.D. Director, National Institute of Mental Health Chair, IACC
9:05 a.m.	Brief Introductions of IACC Members
9:10 a.m.	Review and Approval of July 15, 2008 IACC Meeting Summary
9:15 a.m.	Review and Decisions: IACC Strategic Plan for ASD Research Della Hann, Ph.D. Acting Director, Office of Autism Research Coordination Executive Secretary, IACC Thomas Insel, M.D. Director, National Institute of Mental Health Chair, IACC
10:15 a.m.	Break
10:25 a.m.	Continuation — Review and Decisions: IACC Strategic Plan Thomas Insel, M.D. Director, National Institute of Mental Health Chair, IACC
11:15 a.m.	Discussion: IACC Annual Updating for the Strategic Plan Della Hann, Ph.D. Acting Director, Office of Autism Research Coordination Executive Secretary, IACC
11:30 a.m.	Ethical Concerns in Autism Research Paula C. Durbin-Westby Member and Board of Directors, Autistic Self Advocacy Network
11:45 a.m.	Lunch
12:45 p.m.	Report and Update from the IACC Services Subcommittee Ellen Blackwell, M.S.W. Centers for Medicare & Medicaid Services Co-Chair, Services Subcommittee Lee Grossman President and CEO, Autism Society of America Co-Chair, Services Subcommittee
1:00 p.m.	Services and Supports for Children and Adult Populations with ASD Ellen Blackwell, M.S.W. Centers for Medicare & Medicaid Services Co-Chair, Services Subcommittee
1:30 p.m.	ASD Services: Challenges and Opportunities Cathy Pratt, Ph.D. Director, Indiana Resource Center for Autism, Indiana Institute on Disability and Community, Indiana University
1:50 p.m.	State Presentations on Promising Practices in ASD Programming Pennsylvania Nina Wall Côté, M.S.S., L.S.W. Director, Bureau of Autism Services, Department of Public Welfare Connecticut Kathy Reddington Autism Coordinator, Division of Autism Spectrum Services, Department of Developmental Services
2:30 p.m.	Panel Discussion on Care for Individuals with ASD Moderator: Lee Grossman President and CEO, Autism Society of America Co-Chair, Services Subcommittee Ms. Emily Homer Executive Director VOCA of Maryland D.C. Dr. Jeffrey L. Strully Executive Director, Jay Nolan Community Services Ms. Pamela Beck Support Broker/Parent Advocate
3:15 p.m.	Break
3:30 p.m.	Open Session for Public Comment
4:00 p.m.	Closing Comments and Future Agenda Items
4:15 p.m.	Adjournment

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• Call to Order and Opening Remarks
• Review and Approval: July 15, 2008 IACC Meeting Minutes
• Review and Decisions: IACC Strategic Plan for ASD Research
• Review of Question 1: When Should I Be Concerned?
• Review of Question 2: How Can I Understand What is Happening?
• Ethical Concerns in Autism Research
• Review of Question 3: What Caused This to Happen and Can This Be Prevented?
• Report and Update from the IACC Services Subcommittee
• Autism Spectrum Disorders Services in the United States
• ASD Services: Challenges and Opportunities
• State Presentations on Promising Practices in ASD Programming
• Panel Discussion on Care for Individuals with ASD
• Open Session for Public Comment
  • Ms. Eileen Nicole Simon
  • Ms. Maribel McIntyre
  • Ms. Katherine Walker
  • Mr. Jim Moody
  • Ms. Vicky Debold
  • Mr. Mike Frandsen
• Closing Comments and Future Agenda Items

The Interagency Autism Coordinating Committee (IACC, also referred to as "the committee") convened at 9:00 a.m. on November 21, 2008, in the Rotunda Room of the Ronald Reagan Building in Washington, DC, and adjourned at 4:00 p.m.

In accordance with Public Law 92-463, the meeting was open to the public. Thomas R. Insel, M.D., Director, National Institute of Mental Health, chaired the meeting.

Committee Members Present at the Meeting: Thomas R. Insel, M.D., IACC Chair, National Institute of Mental Health (NIMH); Della Hann, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC), NIMH; Duane F. Alexander, M.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD); James F. Battey, M.D., Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD); Ellen W. Blackwell, M.S.W., Centers for Medicare & Medicaid Services (CMS); Lee Grossman, Autism Society of America; Gail R. Houle, Ph.D., U.S. Department of Education (ED); Yvette M. Janvier, M.D., Children's Specialized Hospital; Walter J. Koroshetz, M.D., National Institute of Neurological Disorders and Stroke (NINDS) (Representing Story Landis); Story C. Landis, Ph.D., National Institute of Neurological Disorders and Stroke (NINDS); Cindy Lawler, Ph.D., National Institute of Environmental Health Sciences (NIEHS); Michael Marge, Ed.D., Office on Disability, U.S. Department of Health and Human Services (Representing Margaret Giannini); Christine M. McKee, J.D.; Lyn Redwood, R.N., M.S.N., C.R.N.P., Coalition for SafeMinds; Alison Tepper Singer, M.B.A., Autism Speaks; Edwin Trevathan, M.D., M.P.H., Centers for Disease Control and Prevention (CDC); Peter van Dyck, M.D., M.P.H., Health Resources and Services Administration (HRSA).

Call to Order and Opening Remarks

Thomas Insel welcomed attendees to the fourth meeting of the IACC and announced that the event was the first meeting of the IACC to be held as a webinar. As a result, members of the public were able to view presented slides over the Internet and listen to the discussion via conference call.

The members of the committee introduced themselves and Dr. Insel welcomed Dr. Susan Daniels, the new Deputy Director of the Office of Autism Research Coordination (OARC), NIMH. Dr. Insel noted that important advances in autism research were being made and would ultimately affect the evolution of the Strategic Plan. Copies of recent articles on autism published in Cell and Nature were available to meeting attendees.

Review and Approval: July 15, 2008 IACC Meeting Minutes

The IACC members voted unanimously to approve the minutes of the July 15, 2008 meeting.

Review and Decisions: IACC Strategic Plan for ASD Research

Dr. Insel reminded the committee that the Combating Autism Act requires the IACC to develop and annually update a Strategic Plan for the conduct and support of autism spectrum disorder (ASD) research. The Strategic Plan will be submitted to the Office of the Secretary of Health and Human Services, the Director of NIH, and the U.S. Congress. Dr. Insel asked that the committee work together constructively to create the initial version of the Strategic Plan.

While there is no specific due date set for the completion of the Strategic Plan in the Combating Autism Act, Dr. Insel recommended that the plan be finished by the end of the calendar year. He suggested that additional meetings be scheduled if the document was not completed by the close of the meeting. Dr. Story Landis stated that the Strategic Plan should be put in place before the presidential administration changes on January 20, 2009.

Dr. Della Hann then reviewed the progress of the IACC since July 2008, when the committee reviewed an earlier draft of the Strategic Plan. This draft was then modified based on the committee's discussions and voted on electronically. A Request for Information (RFI) was issued on August 20, 2008 to invite public comments, which were then analyzed by OARC and used to further revise the draft plan. Additionally, at the IACC meeting in July 2008, the members voted to convene a Strategic Planning Implementation Workgroup to develop cost estimates for the research objectives in the draft Strategic Plan, as required by the CAA. The workgroup met on August 8 and September 10, 2008, and its recommendations on budgetary requirements were submitted to the IACC for review and consideration.

Dr. Insel then led the committee line by line through the Strategic Plan draft. He suggested that the committee review Questions one through five before turning to the Introduction. While reviewing the Strategic Plan, the committee had the options to: (a) retain the language of the August 15, 2008 draft Strategic Plan, (b) accept changes suggested through public comments received in response to the August 2008 RFI or by the Implementation Workgroup (hereafter referred to as "public comments"), or (c) adopt new language proposed by a committee member.

Review of Question 1: When Should I Be Concerned?

In the first paragraph of the subsection "What do we know?," the committee voted to retain the wording of the August draft Strategic Plan, rejecting phrases proposed through public comments (i.e.,"In the classic case" and "although this change may bear the risk of overdiagnosis"). Drs. Story Landis and Ed Trevathan discussed the complexity of diagnosis when trying to classify children with co-occurring conditions like autism and cerebral palsy.

In the second paragraph, the committee reworded one sentence to read "Some children at risk may have significant medical symptoms." Members felt that reiterating the variety of medical symptoms that can accompany autism would be redundant and, instead, opted to insert this general statement regarding medical symptoms in Question 1 and planned to add a list of specific medical symptoms to the Introduction of the Strategic Plan later.

Under the heading, "What do we need?" the committee voted to increase the number of issues cited which limit the use of early interventions. The number was increased from three to five, using language adapted from public comments. Ms. Lyn Redwood suggested and the committee agreed that this section should refer to the American Academy of Pediatrics recommendations for identifying the early warning signs of ASD. A statement proposed through public comments regarding pediatricians looking for early warning signs was accepted with revisions to include "healthcare and other service providers" rather than pediatricians.

Ms. Ellen Blackwell recommended changing the phrase "individuals with ASD" to "people with ASD." The IACC accepted the recommendation.

In the Research Opportunities section, the IACC rejected a proposal from public comments to include "nutritional deficiencies," in a list of criteria to examine in specific ASD subtypes. The committee then considered two research opportunities proposed in public comments. The first focused on bioethics considerations and was added to the Strategic Plan with changes in the language suggested by Dr. Cindy Lawler. The committee voted not to include the second suggestion regarding outcome studies evaluating the impact of early diagnosis on long-term quality of life.

In the Short-Term Objectives section, the committee discussed the feasibility of changing the timeline for developing an efficient diagnostic instrument for use in large-scale studies from 2011 to 2010. Dr. Jim Battey, Dr. Cindy Lawler, and Dr. Duane Alexander expressed concerns about the feasibility of achieving this objective by 2010. The committee agreed to retain the 2011 date. The committee revised the next short-term objective on screening tools to include new tools as well as existing ones. A short-term objective to conduct prevalence studies proposed through public comments was rejected. Dr. Lawler felt that the studies described could not be done until appropriate screening tools were developed. Dr. Battey was unclear about the phrase "active screening prevalence." Dr. Landis suggested that the IACC reexamine the idea of conducting prevalence studies in the next iteration of the Strategic Plan.

Under Long-Term Objectives, the IACC accepted a recommendation of the Implementation Workgroup to change "validate a panel of biomarkers…" to "identify a panel of biomarkers…" in the first long-term objective. In another long-term objective, the IACC changed the number of measures of behavioral and/or biological heterogeneity in children or adults with ASD to "at least" five. The committee reviewed the long-term objective "to disseminate at least one valid and efficient diagnostic instrument" and discussed whether research on dissemination was needed. Ms. Alison Singer recalled that the IACC Strategic Planning Scientific Workshops held in January 2008 identified the need for a briefer, less time-intensive screening tool. In her recollection, the workshops had not called for dissemination research of this tool, but instead, the tool itself. The committee voted to delete the objective.

Review of Question 2: How Can I Understand What is Happening?

In the "What do we know?" section, the committee deleted the phrase "…such as immunological and metabolic abnormalities and gastrointestinal symptoms" from the third paragraph. The committee rejected a suggested addition proposed through public comments that "healthcare services to treat co-occurring symptoms are limited" and included new language, proposed by Ms. Redwood, that stated "treating co-occurring symptoms may have a significant impact on quality of life, symptom severity, and level of functioning."

The committee then discussed the language in this section about the need for post-mortem tissue collection. Dr. Insel expressed his concerns about the level of detail and suggested that the plan be more generic, removing reference to specific agencies and groups. The IACC accepted Dr. Insel's suggested revisions.

Under "What do we need?," the committee voted to reject language proposed through public comments about ASD affecting the whole body, beyond the brain and mind. The IACC agreed to include language proposed through public comments that an evaluation of differences in environmental exposures between children with and without ASD is needed. The committee voted to include the statement, suggested through public comments, that existing brain and tissue resources cannot satisfy the high demand.

In the Research Opportunities section, the committee revised the first research opportunity to include suggestions from Ms. Redwood regarding studies of neurodevelopment and medical trajectories of development in ASD. Suggestions from public comments to include the assessment of neural processing and allergic markers were rejected by the committee. Studies of social cognitive deficits and outcome assessments of early, intensive intervention were deferred to Question 4. The Implementation Workgroup had suggested that the recommendation to conduct research on females with ASD be removed because it was too narrow. Dr. Trevathan emphasized the need for such research and urged the committee to retain the language. The committee agreed and accepted new language on research of the unique strengths and abilities of individuals with ASD.

In the first Short-Term Objective, the committee substituted "biobank" for "brain and tissue acquisition sites." Dr. Insel asked what the difference between the terms was and Ms. Redwood suggested that biobank was more extensive. Dr. Walter Koroshetz endorsed the term biobanks, as well. The committee agreed to include language about maintaining tissue and brains in long-term objectives. The committee also discussed the recommended budget for the objective, Dr. Alexander stated that $40 million (a cost estimate submitted through public comments) was not attainable in the current fiscal climate, but $5 million (the cost estimate submitted by the Implementation Workgroup) was a low estimate. The committee voted to include the objective establishing an international network of biobanks by 2011 with an estimated cost of $10 million.

The committee voted to retain the original language of the next short-term objective: "to support at least four research projects to identify mechanisms of metabolic and/or immune system interactions with the nervous system that may underlie the development of ASD during prenatal - postnatal life." The committee rejected the alternatives of at least 10 studies or 25 studies. Dr. Battey stated that he was uncertain whether they would receive 25 applications with good peer review scores. Ms. Redwood recommended the increase to 25 studies to set goals high and attract new researchers to the field. Mr. Lee Grossman recommended that a minimum be set but not a maximum. Ms. Blackwell then reminded the group that every time the number was raised, the budget would increase as well.

The committee reconsidered the objective to launch three studies specifically focusing on the neurodevelopment of females. The committee voted to delete the objective and merge it into the first long-term objective. A short-term objective proposed through public comments "to identify ways to increase awareness among the ASD community of the potential value of brain and tissue donation" was included. Ms. Alison Singer commented that the public needs to be made aware that brain tissue is not included when a person becomes an organ donor. Another short-term objective proposed through public comments, "to launch human and animal studies that examine immune, infectious and environmental factors in the occurrence of ASD," was deferred for later discussion.

The committee voted to change the wording of the first long-term objective to reflect the special emphasis on including females in ASD research.

After reviewing Questions 1 and 2, the committee members agreed to a working lunch to address more of the Strategic Plan after Ms. Paula Durbin-Westby's presentation on Ethical Concerns in Autism Research. The discussion on the annual updating of the Strategic Plan was tabled in favor of continuing review and revision of the Strategic Plan draft.

Ethical Concerns in Autism Research

Ms. Paula C. Durbin-Westby, Member of the Board of Directors, Autistic Self-Advocacy Network

Ms. Paula C. Durbin-Westby spoke on behalf of the Autistic Self-Advocacy Network (ASAN) to present ethical concerns in autism research that the organization felt should be addressed in the Strategic Plan. These ethical concerns included expanding the focus of autism research to include the whole individual, focusing on issues relevant to the entire lifespan, and presenting a more balanced view of autism spectrum disorder, including positive aspects. She also asked that the committee expand research on quality-of-life issues and include additional members with ASD on the IACC. Ms. Durbin-Westby underscored ASAN's belief that funding for services and supports should be a top priority, shifting away from a narrow focus on causes, cures, and the recovery concept.

Continuation - Review and Decisions: IACC Strategic Plan

Review of Question 3: What Caused This to Happen and Can This Be Prevented?

In the Question 3: "What do we know?" section, the committee voted to delete the parenthetical list of non-genetic environmental factors which may contribute to autism. They rejected the phrase suggested through public comments, "and may or may not vary with severity," at the end of the first paragraph. The committee also rejected a sentence suggested through public comments: "Yet progress in identifying robust susceptibility genes has been slow, further highlighting the complexity of ASD." Dr. Koroshetz objected to the statement, saying that a lot of progress in identifying susceptibility genes had been made. The committee voted to accept language about genetic factors in ASD proposed through public comments: "However, what causes these spontaneous deletions and duplications is not clear and possibly could be due to environmental exposures." Dr. Koroshetz said that the statement could apply to environmental factors affecting sex cells or the fetus in utero. Dr. Insel said he thought the statement referred to de novo large-scale structural changes in the genome that are about ten times more common in children with autism. He also suggested that the statement could include research examining the emerging area of piwi-interacting RNA (piRNA).

The committee discussed potential additions from Ms. Redwood and decided not to include proposed language citing that much of the genetic research done to date has not been fruitful. The committee also voted not to include Ms. Redwood's suggested addition about research on the high heritability of autism being based on outdated research. Dr. Insel informed the committee of an unpublished study conducted by Stanford's Joachim Hallmayer. The study was the largest ever conducted on the heritability of autism, following 130 monozygotic pairs, and Dr. Insel said that he believed it would further support ASD's high heritability.

The committee voted to change the statement that research on environmental risk factors is "less well developed" to "also underway." The committee discussed the passage describing the controversy around vaccines and autism. Suggested additional language for the passage read: "These data, as well as subsequent research, indicate that the link between autism and vaccines is unsupported by the research literature. Some do not agree and remain concerned that ASD is linked or caused by vaccination…" Dr. Cindy Lawler said that the suggested language provided a fair description of the sentiment around the issue and was supportive of its inclusion.

Ms. Redwood suggested new wording for the vaccines and autism section , stating that progress in identifying environmental factors through research on genetic susceptibility had been chronically underfunded. Her suggested additions also included language from the Institute of Medicine Workshop in 2007 on the potential role of mercury in autism. Additionally, she proposed adding that the Immunization Safety Review Committee stated that population-based studies would not be able to detect sub-populations that could be genetically more vulnerable to mercury at lower doses than normal. The fourth part of her suggested revisions stated: "Many remain concerned that ASD is linked or caused by vaccination through exposure to thimerosal, the measles, mumps, rubella vaccine, imposing challenges to a weakened immune system, or possibly due to mitochondrial disorders." She also asked the committee to include a statement that Congress had expressed a desire for studies on vaccines, mercury, and autism. Additionally, Ms. Redwood stated that the reference to the 2004 Institute of Medicine study was dated and that studies linking thimerosal-containing vaccines and adverse neurodevelopmental outcomes had since been released. She expressed concern that these newer studies were not referenced in the draft Plan.

Dr. Trevathan asked the committee how much detail they felt was appropriate to include in this section. He acknowledged that that there were opposing views on the relationship between vaccines and autism and suggested that the IOM Immunization Safety Review Committee might be the more appropriate body to address vaccine questions. Dr. Trevathan said that the IACC lacked the vaccine expertise that was included in the Immunization Safety Review Committee.

Dr. Lawler acknowledged that the role of the environment had been understudied based on the evaluation of the research matrix, however she agreed that this was information more suited to the "What do we need?" section rather than the "What do we know?" section.

The committee then voted 10 to 1 to accept the language indicating that the link between autism and vaccines is unsupported by the research literature. Mr. Grossman said that while he voted for the language he was uncomfortable with it and hoped they could revisit it in the future. Dr. Insel said that he hoped to address any discomfort with the language at that moment so that they could continue reviewing the document. Ms. Redwood said that it was inaccurate to assert that the link between autism and vaccines has not been supported by the research literature. She said that to be balanced, the plan should cite studies that had found a link between vaccines and autism. Ms. Redwood said that this issue was a subject of great public interest and to not provide a balanced perspective did a disservice to all the public comments received.

Dr. Insel stated that although they had received public comments on both sides of the vaccine issue, it was striking how many comments implored the IACC not to include vaccines in the Strategic Plan. Mr. Grossman said that he hoped to make the statement about vaccines more general because he felt that referring to the MMR vaccine was too limiting and that overall, the language did not represent either side well. Ms. Redwood commented that the studies relied on by the National Academy of Sciences were all large epidemiological studies, three of them conducted in Denmark, and funded by a for-profit vaccine manufacturer.

Dr. Koroshetz suggested the following language: "…the link between autism and vaccines is unsupported by the weight of the research literature. However, some scientific studies do not agree. Therefore, some people remain concerned that ASD is linked or caused by vaccination in specific subpopulations with susceptibility related to weakened immune systems or possibly due to underlying mitochondrial disorder."

Ms. Redwood offered to prepare a list of studies supporting an association between vaccines and autism. Dr. Hann responded that Ms. Redwood had already provided such a document. Dr. Insel said that there was no language that would please everyone in the community, except to clarify that there is a fundamental disagreement in how people interpret the literature. The committee then voted on the proposed language and by a vote of 7 to 3, retained the language that had been initially suggested:

"These data, as well as subsequent research, indicate that the link between autism and vaccines is unsupported by the research literature. Some do not agree and remain concerned that ASD is linked or caused by vaccination through exposure to Measles Mumps Rubella (MMR), imposing challenges to a weakened immune system, or possibly due to mitochondrial disorder."

At this point, Dr. Insel recommended that another meeting be scheduled to finish reviewing the document.

Report and Update from the IACC Services Subcommittee

Ms. Ellen Blackwell, co-chair of the Services Subcommittee, reported on the activities of the subcommittee, which had last convened on October 10, 2008. During that meeting, Dr. Anne Sperling reviewed the summary of the public responses to the services Request for Information (RFI) with the committee. Ms. Blackwell announced that the next Services Subcommittee meetings will be held December 10, 2008 and February 24, 2009 at NIH. Another will be held on March 26, 2009, at the Humphrey Building in Washington D.C. Capt. Robert DeMartino, Director of the Behavioral Medicine Division at TRICARE, will present on ASD service demonstrations at the Department of Defense during the upcoming March meeting.

Mr. Lee Grossman presented the summary of public responses from the services RFI that was issued in early August. He stated that the Services Subcommitee plans to use these responses to update the Services Roadmap created in 2004 and presented to the IACC in 2005. The RFI drew 137 responses on 368 issues. Seventy-five research initiatives were addressed in the 368 issues. The Services Subcommittee intends to re-examine OARC's categorization of the responses to the RFI. For example, Mr. Grossman indicated that the category "healthcare and treatment" may be broken down into further subcategories. Dr. Insel expressed an interest in examining whether different demographic groups responding to the RFI would correspond to different service concerns.

Autism Spectrum Disorders Services in the United States

Ms. Blackwell presented on the services system for people with ASD in the United States. She outlined the history of services and the shift from institutional care to home-based care. She also described the various funding streams for autism services and the legislative measures that support the education of children with disabilities. These measures include the Individuals with Disabilities Education Act (IDEA), which requires that states provide a free and appropriate public education for children with disabilities ages 3 to 21. Children may receive Individualized Education Plans (IEPs), which are put into place to describe measurable functional and academic goals. Ms. Blackwell also presented the complexities of the Medicaid system and waivers serving people with ASD.

ASD Services: Challenges and Opportunities

Ms. Blackwell introduced Dr. Cathy Pratt, Director of the Indiana Resource Center for Autism, who discussed the service delivery system for people with ASD. She said that the incidence of autism is increasing and that individuals often have a host of complex needs. For people with autism and a mental health issue, entering the Developmental Disabilities (DD) system can prove especially challenging. The DD system will classify the person's problem as a mental illness, while the mental health system will identify the issue as a developmental disability. Dr. Pratt also explained that family members of people with ASD may find it difficult to negotiate services because it requires understanding a complex set of requirements and technical jargon.

Dr. Pratt explained that children with ASD maturing into adulthood will be a major source of economic and social pressure in the future. She stressed that services are needed to help transition adults with ASD into the workforce. She concluded her presentation with the thought that research is only effective if it can be generalized to the broader public and be made available to all.

State Presentations on Promising Practices in ASD Programming

Pennsylvania

Ms. Blackwell introduced Ms. Nina Wall-Cote, Director of the Pennsylvania Bureau of Autism Services, who delivered a presentation on Pennsylvania's ASD programming initiatives. Ms. Wall-Cote described the recommendations of the Autism Task Force convened in 2003 by Ms. Estelle B. Richman, Secretary of Public Welfare in Pennsylvania. The task force, comprised of 300 stakeholders, produced a report with five recommendations to improve the state system. These recommendations included the development of an autism-specific Medicaid waiver. Pennsylvania is the only state to have a waiver solely for individuals over 21 with autism. Ms. Wall-Cote also presented on Act 62, autism parity legislation passed in Pennsylvania which mandates that private insurers begin covering up to $36,000 of autism services a year, beginning July 1, 2009. The state is defining how to implement the insurance legislation. Ms. Wall-Cote concluded her presentation by encouraging members of the IACC to look at the Pennsylvania Task Force report.

Connecticut

Ms. Kathy Reddington, Autism Coordinator for the Division of Autism Spectrum Services, State of Connecticut Department of Developmental Services, presented the committee with information on a state-funded pilot program. The purpose of the small program is to develop a model to provide services to adults with ASD who do not have mental retardation. Historically, Developmental Disability agencies in Connecticut only served people with an IQ of 69 or below. The program provides service to 50 individuals and uses 16 provider agencies. Supports and services offered include a life skills coach, community mentor, job developer, job coach, social skills groups, and respite services. The pilot program received $1,000,000 of annual funding in July 2006 for a period of three years. An outcome study of the program's implementation will be available in January 2009.

Ms. Reddington presented anecdotal evidence from participants, as well as positive preliminary results of the outcome study. People who participated in the pilot were more likely to be working than before entering the program, had higher average wages, and were significantly happier with the pay they earn from their jobs and with the environment of their jobs than at baseline. Ms. Reddington reported being surprised that the amount of TV, internet, and video watching did not decrease during the program.

Panel Discussion on Care for Individuals with ASD

Dr. Jeffrey Strully of the Jay Nolan Community Services presented his organization's efforts to move people with autism from group homes to independent living. Dr. Strully asked that research be done to identify the characteristics of good direct support workers. Ms. Pamela Beck, described her experiences raising her son with ASD, who is also diabetic, and who is now 24-years-old. She described her son's successes - holding a part-time job, managing his diabetes, and maintaining a relationship with his girlfriend. Ms. Emily Homer, Executive Director of ResCare-VOCA of Maryland, described her organization, which provides residential supports to men and women with intellectual, developmental, and mental health disabilities. She discussed how low provider reimbursement rates affected the quality of the staff recruited and their longevity. Ms. Homer expressed concern about the potential shortfall of direct service care providers in the future as need grows substantially without sufficient increase in the workforce.

Open Session for Public Comment

Six members of the public made oral statements to the committee; each were allowed up to five-minutes to address the committee.

Ms. Eileen Nicole Simon referred to an article that appeared in the October 1969 issue of Scientific American that described brain damage caused by asphyxia at birth. She asked that the IACC research Strategic Plan include investigation of brain impairments caused by oxygen insufficiency during birth. She also suggested that research be done investigating the role of the midbrain auditory system.

Ms. Maribel McIntyre asked that the IACC commit more funding to research on gene-environment interactions. She described the gastrointestinal issues her autistic son experiences and touted the benefits of a gluten/casein-free diet. She requested that more money be spent on biomedical interventions to study the effects of dietary manipulation in children with ASD.

Ms. Katherine Walker, mother of a boy with PDD-NOS, described an incident where her son almost drowned because of a lifeguard's inattentiveness. She made the analogy that she again had to save her son when those who were supposed to be looking out for his safety were not. Ms. Walker stated that the Combating Autism Act calls to support the study of vaccine safety and biomedical interventions. She also reported that her son had responded well to a gluten-free/casein-free diet and she described her son's symptoms flaring after eating certain foods. She asked why parents' reports were not adequate to trigger formal clinical studies of the role of diet in managing autism.

Mr. Jim Moody spoke on behalf of the National Autism Association. He asked that autism be declared a national health emergency that justifies a crisis-level response from the White House. Mr. Moody asked that more research be conducted on the role of vaccines and their components in the etiology of autism.

Ms. Vicky Debold, a mother of an 11-year-old boy with autism and a representative of SafeMinds, raised issues with the August version of the Strategic Plan. She said that the plan lacked a sense of urgency and overemphasized genetics research while underemphasizing research on environmental factors and gene-environment interactions. She also stated that the plan omits oversight and accountability mechanisms and reflected inadequate representation of the autism community throughout the planning process.

Mr. Mike Frandsen asked that NIH and HHS make better use of Schedule A hiring authority, a federal program used to hire people who have a severe disadvantage in obtaining employment. He cited statistics about hiring under Schedule A, noting that HHS hired 213 people with disabilities from 2002 to 2008. Of these hires, 98 had physical disabilities, 15 had cognitive disabilities and none had psychiatric disabilities.

Closing Comments and Future Agenda Items

Dr. Insel thanked the people who participated in the public comment session. He then discussed scheduling a future meeting in December 2008 to finish reviewing the Strategic Plan. The meeting was adjourned at 4:00 p.m.

Certification

These minutes of the IACC full Committee Meeting on November 21, 2008 were approved by vote of the IACC on May 4, 2009.

I hereby certify that the foregoing meeting minutes are accurate and complete.

/Thomas Insel/
Thomas Insel, M.D.
Chair, Interagency Autism Coordinating Committee

References

¹Ashwin E, Ashwin C, Rhydderch D, Howells J, Baron-Cohen S. Eagle-eyed visual acuity: an experimental investigation of enhanced perception in autism. Biol Psychiatry. 2009 Jan 1;65(1):17-21. Epub 2008 Jul 23.

Geschwind DH. Autism: many genes, common pathways? Cell. 2008 Oct 31;135(3):391-5.

Kelleher RJ 3rd, Bear MF. The autistic neuron: troubled translation? Cell. 2008 Oct 31;135(3):401-6.

Ramocki MB, Zoghbi HY. Failure of neuronal homeostasis results in common neuropsychiatric phenotypes. Nature. 2008 Oct 16;455(7215):912-8. Review.

Sudhof TC. Neuroligins and neurexins link synaptic function to cognitive disease. Nature. 2008 Oct 16;455(7215):903-11. Review.

Walsh CA, Morrow EM, Rubenstein JL. Autism and brain development. Cell. 2008 Oct 31;135(3):396-400.

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• Oral Public Comments (PDF – 168 KB)
• Written Public Comments (PDF – 261 KB)

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• Meeting Transcript (PDF - 1.4 MB)

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Presentation	Presenter(s)
Ethical Concerns in Autism Research (PDF – 166 KB)	Presenter(s) Paula C. Durbin-Westby, Member and Board of Directors, Autistic Self Advocacy Network
Presentation Report and Update from the IACC Services Subcommittee (PDF – 36 KB)	Presenter(s) Ellen Blackwell, M.S.W., Co-Chair of the Services Subcommittee, Centers for Medicare & Medicaid Services; Lee Grossman, Co-Chair of the Services Subcommittee, President and CEO, Autism Society of America
Presentation Autism Spectrum Disorders Services in the United States (PDF – 121 KB)	Presenter(s) Ellen Blackwell, M.S.W., Co-Chair of the Services Subcommittee, Centers for Medicare & Medicaid Services
Presentation Research and Services: Impacting Individuals Today (PDF – 326 KB)	Presenter(s) Cathy Pratt, Ph.D., Director, Indiana Resource Center for Autism
Presentation Bureau of Autism Services - Department of Public Welfare, Commonwealth of Pennsylvania (PDF – 597 KB)	Presenter(s) Nina Wall Côté, M.S.S., L.S.W., Director, Bureau of Autism Services, Department of Public Welfare
Presentation Connecticut Department of Developmental Services - Autism Spectrum Disorder Pilot Program (PDF – 731 KB)	Presenter(s) Kathy Reddington, Autism Coordinator, Division of Autism Spectrum Services Department of Developmental Services
Presentation A Providers Perspective on the Challenges of Supporting Adults with ASD (PDF – 7 MB)	Presenter(s) Emily Homer, Executive Director, VOCA of Maryland D.C.
Presentation Jay Nolan Community Services (PDF – 423 KB)	Presenter(s) Jeffrey L. Strully, Ph.D., Executive Director, Jay Nolan Community Services
Presentation Brandon Beck: The Long and Winding Road (PDF – 381 KB)	Presenter(s) Pamela Beck, Support Broker/Parent Advocate
Presentation Public Comments of Eileen Nicole Simon (PDF – 247 KB)	Presenter(s) Eileen Nicole Simon (Public Comment)

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