IACC Full Committee Meeting - October 22, 2010
|Date:||Friday, October 22, 2010|
|Time:||10:00 a.m. to 5:30 p.m. Eastern|
|Agenda:||Invited speakers will give presentations on various aspects of autism spectrum disorder research and services and the IACC will discuss plans for the annual update of the IACC Strategic Plan for Autism Spectrum Disorder Research.|
|Place:||The National Institutes of Health, Main Campus
The William H. Natcher Conference Center
45 Center Drive
Conference Rooms E1/E2
Bethesda, Maryland 20892
|Conference Call:||USA/Canada Phone Number: 888-577-8995
Access code: 1991506
|Cost:||The meeting is free and open to the public.|
Pre-registration is recommended to expedite check-in. Seating in the meeting room is limited to room capacity and on a first come, first served basis.
|Access:||Metro accessible - Medical Center Metro Station|
|Contact Person:||Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC, Room 8185A
Rockville, Maryland 20892-9669
Any member of the public interested in presenting oral comments to the Committee must notify the Contact Person listed on this notice by 5:00 p.m. Eastern on Thursday, October 14, 2010 with their request to present oral comments at the meeting. Interested individuals and representatives of organizations must submit a written/electronic copy of the oral presentation/statement including a brief description of the organization represented by 5:00 p.m. Eastern on Friday, October 15, 2010. Statements submitted will become a part of the public record. Only one representative of an organization will be allowed to present oral comments and presentations will be limited to three to five minutes per speaker, depending on number of speakers to be accommodated within the allotted time. Speakers will be assigned a time to speak in the order of the date and time when their request to speak is received, along with the required submission of the written/electronic statement by the specified deadline.
In addition, any interested person may submit written comments to the IACC prior to the meeting by sending the comments to the Contact Person listed on this notice by 5:00 p.m. Eastern Monday, October 18, 2010. The comments should include the name, address, telephone number and when applicable, the business or professional affiliation of the interested person. All written statements received by the deadlines for both oral and written public comments will be provided to the IACC for their consideration and will become part of the public record.
The meeting will be open to the public and also available through a conference call phone number and webcast live on the Internet. Members of the public who 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 webcast live or conference call, please-mail IACCTechSupport@acclaroresearch.com.
Individuals who participate in person or by using these electronic services and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the Contact Person listed on this notice at least 7 days prior to the meeting.
To access the webcast live 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).
NIH has instituted stringent security procedures for entrance onto the NIH campus. All visitors must enter through the NIH Gateway Center. This center combines visitor parking, non-commercial vehicle inspection and visitor ID processing, all in one location. The NIH will process all visitors in vehicles or as pedestrians. You will be asked to submit to a vehicle or personal inspection and will be asked to state the purpose of your visit. Visitors over 15 years of age must provide a form of government-issued ID such as a driver's license or passport. All visitors should be prepared to have their personal belongings inspected and to go through metal detection inspection.
When driving to NIH, plan some extra time to get through the security checkpoints. Be aware that visitor parking lots on the NIH campus can fill up quickly. The NIH campus is also accessible via the metro Red Line, Medical Center Station. The Natcher Conference Center is a 5-minute walk from the Medical Center Metro Station.Additional NIH campus visitor information is available at: http://www.nih.gov/about/visitor/index.htm
As a part of security procedures, attendees should be prepared to present a photo ID at the meeting registration desk during the check-in process. Pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered.
Meeting schedule subject to change.
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|9:00 a.m.||Onsite Registration Desk Opens|
|10:00 a.m.||Call to Order and Opening Remarks
Thomas Insel, M.D.
Director, National Institute of Mental Health
|10:10 a.m.||Review and Approval of July 16, 2010 Minutes|
|10:15 a.m.||Alexa Posny, Ph.D.
Assistant Secretary of Special Education and Rehabilitative Services, U.S. Department of Education
|10:45 a.m.||Wandering and Autism: The Need for Data and Resources
President, National Autism Association
Board Chair, National Autism Association
|11:15 a.m.||The CLASS Act
Richard Frank, Ph.D.
Deputy Assistant Secretary for Policy and Evaluation, Department of Health and Human Services
|11:45 a.m.||Neural Signatures of Autism
Kevin Pelphrey, Ph.D.
Harris Associate Professor of Child Psychiatry, Child Study Center and Child Neuroscience Lab, Yale University
|1:00 p.m.||Public Comments|
|1:30 p.m.||Meeting Update: NICHD Workshop "Disparities in the Identification of Children with Autism Spectrum Disorders," August 19, 2010
Alice Kau, Ph.D.
Health Scientist Administrator, Intellectual and Developmental Disabilities Branch, Eunice Kennedy Shriver National Institute of Child Health and Human Development
Regina Smith James, M.D.
Director, Division of Special Populations, Eunice Kennedy Shriver National Institute of Child Health and Human Development
|1:40 p.m.||Meeting Update: NIEHS Workshop "Autism and the Environment: New Ideas for Advancing the Science," September 8, 2010
David Armstrong, Ph.D.
Senior Investigator, Chief of the Laboratory of Neurobiology, National Institute of Environmental Health Sciences
|1:50 p.m.||Meeting Update: "Genetic Risk Factors for Autism Spectrum Disorders: Translating Genetic Discoveries into Diagnostics" Symposium, September 1-2, 2010
Stephen Scherer, Ph.D.
Director, The Centre for Applied Genomics, The Hospital for Sick Children
Director, McLaughlin Centre for Molecular Medicine, University of Toronto
|2:00 p.m.||Meeting Update: Simons Foundation Autism Research Initiative (SFARI) Annual Meeting, September 12-14, 2010
Gerald Fischbach, M.D.
Scientific Director, Simon's Foundation Autism Research Initiative
|2:10 p.m.||Research Update: Study of Health Outcomes in Autistic Children and Their Families
Ann Wagner, Ph.D.
Chief, Neurobehavioral Mechanisms of Mental Disorders Branch, National Institute of Mental Health
|2:20 p.m.||Data Sharing Update: National Database for Autism Research (NDAR)
Michael Huerta, Ph.D.
Director, National Database for Autism Research, National Institute of Mental Health
|2:25 p.m.||Committee Business
|2:45 p.m.||Committee Business
|5:00 p.m.||Public Comments Discussion Period|
|5:30 p.m.||Closing Comments and Adjournment|
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- Introductions and Approval of the Minutes
- U.S. Department of Education Update – Dr. Alexa Posny
- Wandering and Autism: The Need for Data and Resources – Wendy Fournier and Lori McIlwain
- The CLASS Act – Dr. Richard Frank
- Neural Signatures of Autism – Dr. Kevin Pelphrey
- Public Comments
- Meeting Updates
- NICHD Workshop "Disparities in the Identification of Children with Autism Spectrum Disorders"
- "Genetic Risk Factors for Autism Spectrum Disorders: Translating Genetic Discoveries into Diagnostics" Symposium
- NIEHS Workshop "Autism and the Environment: New Ideas for Advancing the Science"
- Simons Foundation Autism Research Initiative (SFARI) Annual Meeting
- Research Update: Study of Health Outcomes in Autistic Children and Their Families
- Data Sharing Update: National Database for Autism Research (NDAR)
- Committee Business: Services Workshop Update
- RFI Update
- Portfolio Analysis Update
- Discussion: Updating the Strategic Plan
- Public Comments Discussion Period
- Closing Comments and Adjournment
The Interagency Autism Coordinating Committee (IACC, also referred to as "the committee") convened a meeting on Friday, October 22, 2010, from 10:00 a.m. to 5:25 p.m. at the William H. Natcher Conference Center in Bethesda, Maryland.
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.
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; Susan A. Daniels, Ph.D., Office of Autism Research Coordination (OARC), NIMH; David Armstrong, Ph.D., (representing Linda Birnbaum, Ph.D.), National Institute of Environmental Health Sciences; Ellen W. Blackwell, M.S.W., Centers for Medicare & Medicaid Services (CMS); Coleen Boyle, Ph.D., Centers for Disease Control and Prevention (CDC); Geraldine Dawson, Ph.D., Autism Speaks; Gerald Fischbach, M.D., Simons Foundation; Lee Grossman, Autism Society; Alan E. Guttmacher, M.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD); Gail R. Houle, Ph.D., U.S. Department of Education (ED); Larke N. Huang, Ph.D., Substance Abuse and Mental Health Services Administration (SAMHSA); Jennifer G. Johnson, Ed.D., (representing Sharon Lewis), Administration for Children and Families (ACF); Walter J. Koroshetz, M.D., National Institute of Neurological Disorders and Stroke (NINDS); Christine M. McKee, J.D.; Ari Ne'eman, Autistic Self Advocacy Network (ASAN); Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Denise D. Resnik, Southwest Autism Research & Resource Center; Alison Tepper Singer, M.B.A., Autism Science Foundation; Marjorie Solomon, Ph.D., M.B.A., University of California, Davis; Peter van Dyck, M.D., M.P.H., Health Resources and Services Administration (HRSA).
Introductions and Approval of the Minutes
The committee members introduced themselves and approved the minutes from their last full meeting on July 16, 2010.
U.S. Department of Education Update – Dr. Alexa Posny, Assistant Secretary of the Office of Special Education and Rehabilitative Services
Dr. Alexa Posny, Assistant Secretary of the Office of Special Education and Rehabilitative Services (OSERS), spoke to the committee about the U.S. Department of Education's programs serving people with ASD and their families. The mission of OSERS is "to provide leadership to achieve full integration and participation in society of people with disabilities by ensuring equal opportunity and access to, and excellence in, education, employment and community living." Dr. Posny noted that it was the 35th anniversary of the Individuals with Disabilities Education Act (IDEA), which guaranteed free and appropriate education to everyone regardless of their level of handicap. In 1974, the year prior to the enactment of the Education for All Handicapped Children Act (which gave rise to IDEA), 1.7 million children were excluded from the classroom. By 2008, 6.6 million students with disabilities were receiving a public education.
She noted that in 1992, autism was added as a required reporting category. Prior to that, students with autism received services under an assortment of disability categories (e.g., OHI – "other health impairment," MR/ID –"mental retardation/intellectual disability," or LD – "learning disability").The 1997 amendments to IDEA changed the focus from merely providing disabled children with an education to improving results and providing meaningful access to the general curriculum. The amendments also required states to include students with disabilities in their state- and district-wide assessment programs.
Dr. Posny then showed a graph illustrating that the number of students with disabilities being served under IDEA (ages 6-21) had decreased every year since FY05. She explained that this may largely be attributable to effective early interventions decreasing the number of children who are identified as learning disabled. In 2009, 5 percent of students served under IDEA part B (services for school-aged children) were identified as having autism. This equates to approximately 0.5 percent of all students in the United States. She then presented another graph showing that students with autism under IDEA had increased substantially from FY05 to FY09 (growing from approximately 190,000 students in FY05 to 330,000 in FY2009). She noted that 426,000 of the 3 million teachers in the U.S. are special education teachers, with the vast majority being fully certified. She explained that part B of IDEA serves school-aged children, while part C serves infants and toddlers. Both parts are funded through formula-based grants. The Institute of Education Sciences (IES) funds research to develop and test the effectiveness of preschool and school-based interventions. Dr. Posny reported that the Office of Special Education Programs (OSEP) provided $10 million in discretionary grant funds in 2010 to identify and disseminate effective interventions for ASD.
Dr. Posny described current OSEP-funded projects related to ASD including 70 Parent Training and Information centers (PTIs) and 30 Community Parent Resource Centers (CPRCs). CPRCs exist throughout the country and provide information and advocacy for families of children with disabilities. Information about technical assistance for Parent Centers is available at www.taalliance.org. The Alliance helps Parent Centers by offering technical assistance to inform parents of their rights and serving as a source of up-to-date information. The Alliance also collects data and conducts annual regional conferences as outreach to parents. Dr. Posny reviewed the OSEP-funded Personnel Preparation grants available to individuals working specifically with children with ASD and a selection of Personnel Preparation projects currently being conducted at universities.
OSEP supports the National Professional Development Center on ASD, which promotes the use of evidence-based practice for children and adolescents with ASD. The Center works on the state and classroom level to increase personnel, promote the development of children with ASD, and support families through use of evidence-based practices. Dr. Posny showed a map illustrating the twelve states currently involved with the center. Evidence-based practice briefs are available on the Center's web site (http://autismpdc.fpg.unc.edu), as well as online modules on evidence-based practices
Dr. Posny then described several projects currently being funded by the Department of Education's National Institute on Disability and Rehabilitation Research (NIDRR). NIDDR is the research arm of OSEP and its mission is to "generate new knowledge and promote its effective use to improve the abilities of individuals with disabilities to perform activities of their choice in the community." At the University of Kansas researchers are investigating the use of telemedicine and online training programs for parents with children with ASD. At Northeastern University work is being done to determine whether animations facilitate symbol understanding in children with ASD. A project at the University of Michigan is examining the effects of bicycle training interventions for youth with Down syndrome and ASD.
Dr. Posny then spoke about the Rehabilitative Services Administration (RSA) and its work to address the needs of people with ASD. In 2009, the RSA's vocational rehabilitation program helped 2,314 individuals with ASD to successfully find employment. She shared a few examples of RSA program across the nation. In South Carolina, the RSA conducts training with an autism focus related to transition and functional living skills and in Ohio, they conduct training related to working with individuals with ASD using assistive technology. Currently, RSA is in the process of developing a new vocational rehabilitation service model, conducting a demonstration employment project, and developing short, on-demand multimedia lessons.
Dr. Posny said that more money is needed to increase the focus on educational services for students with ASD. OSEP is currently working on the reauthorization of the Elementary and Secondary Special Education Act. The ultimate goal is to provide an environment where students with ASD can acquire the same essential knowledge and skills of all other students. Classrooms should foster innovation and excellence and provide a rich and safe environment where all students can be successful. Dr. Posny ended with the reminder that "If you want to go fast go alone; But if you want to go far, go together."
Questions and Comments from the Committee
Mr. Ne'eman asked about OSER's activities related to the use of aversives, restraints, and seclusion and asked if the Department of Education had an official stance on the issue in light of pending legislation in Congress. Dr. Posny said that the Department of Education did not have an official position but she felt that teachers should be taught to use positive behavioral interventions so that restraint and/or seclusion would not have to be used. She explained that one of the major issues in the pending legislation related to whether or not the use restraint could be included in the student's Individualize Education Plan (IEP). If the provision was not included in the IEP, teachers may have to call the police to stop a child from harming himself of someone else. Mr. Ne'eman said that within the community, people worried that including a provision for restraint in the IEP might encourage its use in non-emergency situation.
Ms. Blackwell stated that Medicaid and the Department of Education are important partners in delivering services for people with ASD. Mr. Grossman asked what actions the IACC could take to support OSEP's endeavors. Dr. Posny said that the existence of the committee itself was an important statement on the increasing focus on ASD. She said that more research on evidence-based practices is needed to determine which supports and interventions are effective. She asked for guidance on what should be done in the next five to ten years and noted the importance of early identification. Children that receive effective interventions as an infant or toddler may not need services once they enter elementary school, she noted. Dr. Insel asked whether there was a committee within the Department of Education with which the IACC could collaborate. Dr. Posny said that no such committee existed within the Department of Education but that they would be interested in joint ventures along with the Department of Justice and the Department of Labor. She noted that the different funding streams for various services complicated collaborative efforts.
Wandering and Autism: The Need for Data and Resources – Wendy Fournier, President of the National Autism Society (NAA), and Lori McIlwain, NAA Board Chair
Ms. Wendy Fournier and Ms. Lori McIlwain, of the National Autism Association, spoke to the committee about the dangers of people with ASD wandering and the need for data and resources on the phenomenon. Ms. Fournier noted six deaths of individuals with ASD that happened prior to April 30, 2010. The majority of the fatalities were attributed to drowning, one to prolonged exposure, and one was a result of being struck by a vehicle. She then presented a list of 12 more recent wandering incidents and fatalities that had occurred in the past several months. She presented the facts on the death of James Delorey, age 7, and Logan Mitcheltree, age 9, both of whom died from prolonged exposure after wandering during winter. She noted that Nova Scotia had recently put "Project Lifesaver" in place to help recover individuals with autism, Alzheimer's, and other special needs who wander. In August, the program located a child with ASD within 9 minutes of initiating the search. Ms. Fournier than presented the details related to the deaths of two young children with ASD who drowned during the summer months. Ashley Brock, age 6, drowned in a neighbor's swimming pool, while Nathan Kinderdine, age 7, drowned in his school's indoor swimming pool. Jack Hensley, age 5, and Devine Farrier, age 11, were killed in separate incidents after being struck by vehicles. Dr. Fournier addressed the misperception that these incidents were due to a parent's inattentiveness. She explained that some children with ASD have the inexplicable urge to flee and will do so whenever the opportunity arises. Parents report that specific events (such as the use of a certain word) or situations that cause fear may trigger an abnormal flight response. Some individuals who wander seem to be driven by the need to seek out places or objects of fascination such as bodies of water or street signs.
Ms. McIlwain then spoke about her own son Connor, now 10 years old, who has wandered several times. In 2007, at the age of 7, Connor wandered from a school playground and was picked up by a man in a car and brought to the police. Connor is fascinated by highway signs and demonstrates abnormal fight/flight response when in distress. In this case, the school had not contacted the authorities to report that Connor had gone missing. Ms. McIlwain reported that Connor has wandered eight times from three different schools – twice since 2008 during unescorted transitions between classrooms. Ms. McIlwain was required to get documentation from Connor's doctor to guarantee that he will be escorted. (Connor had been encouraged to walk alone between classrooms in an attempt to foster independence despite Ms. McIlwain's concerns.) Ms. McIlwain described the circumstances surrounding the death of Benjy Heil, age 7, who wandered and was found dead in a nearby pond. She explained that an AMBER alert could not be issued because the child had not been abducted. According to the Department of Justice guidelines, AMBER alerts can only be issued if a confirmed abduction of a child 17 years of age or younger has taken place, the child is at risk of serious injury or death, and there is sufficient description of the child, captor, or captor's vehicle.
Currently there is a lack of data on wandering incidents, but a 2007 National Autism Association Survey found that 92 percent of parents who responded reported that their child or children with ASD had wandered from a safe environment at least once. A 2001 study found that elevated death rates were observed for several causes, including seizures and accidents such as suffocation and drowning and a 2008 study found that the mortality risk among people with ASD is nearly twice that of the general population. Studies of Alzheimer's related wandering have shown that more than 60 percent of people with dementia will wander and up to half will suffer a serious injury or death if not found within 24 hours. A "Silver Alert," similar to the AMBER alert, has been created to notify the public that a senior has wandered. The Department of Justice contributes $5,000,000 annual for first-responder training and grants for tracking technology. By comparison, no formal data has been collected on autism-specific wandering, causes of wandering, or number of fatalities and no federal money has been contributed to fight autism-specific wandering. Importantly, there is no medical subclassification or general medical coding for ASD wandering. If such a code existed and could be included in a child's Individual Education Plan (IEP) parents could be assured that their child would be escorted between classrooms, said Ms. McIlwain. She noted that schools are currently not mandated to notify parents if a wandering incident has occurred in school and there is no Emergency Broadcast Alert Systems for minors with cognitive impairments. Ms. McIlwain said that some parents are hesitant to call 911 for fear that their child will be removed from their home. Tracking technologies can be confusing and expensive and parents report little physician guidance related to wandering.
Ms. Fournier noted that her 10-year-old daughter with ASD is also a wanderer. She cited the need for data collection of ASD-specific wandering and called on the Centers for Disease Control and Prevention (CDC) to lead prevention efforts. In group settings, she recommended employing the "tag team" method, where adults will verbally "tag" one another to indicate who should be actively watching the child. She recommended performing a cost analysis to compare protection via tracking system with other search efforts.
Mrs. Fournier advocated creating toolkits for parents to implement prevention strategies and disseminating information to caregivers through the AAP Autism Toolkit Family Handouts and CDC's Learn the Signs. Act Early. campaign. She recommended developing training for first responders on specific challenges faced while searching for an individual with ASD. She also recommended creating a database with information about individuals that may be prone to wander that could be quickly accessed by first responders. She promoted federal legislature that would ensure families are told of wandering incidents. She also said that physicians need to discuss elopement with families.
AWAARE coordinates with six national organizations and produces non-branded promotional materials that can be used by any organizations. They are a valuable resource for caregivers, school administrators, law enforcement personnel, physicians, and therapists, Ms. Fournier said. She said it was imperative to establish an emergency broadcast alert system for children with cognitive impairments or to add provision to the existing AMBER alert criteria to allow its use. A medical code for autism-specific wandering also needs to be developed. Doing so would aid coverage of tracking devices as a medical necessity and help parents and caregivers combat the perceptions that wandering relates to neglect or bad parenting. Discussing tracking technology, Ms. Fournier said that there needs to be oversight of these products and official recommendations made. She said that caregivers need to be educated on the various different tracking technologies (radio frequencies, GPS, and cell technology). There is a need for federal funding for tracking technologies, research, and to support families who are unable to afford home safety and security measures. Finally, she recommended that the IACC specifically add a new objective to the Strategic Plan focused on ensuring the safety of individuals with ASD and that the IACC establish a subcommittee on safety issues that would address wandering, restraint and seclusion, bullying, family support, and education for law enforcement personnel.
Questions and Comments from the Committee
Dr. Dawson said that addressing safety issues was an area of low-hanging fruit that could be addressed through relatively straight-forward actions. Ms. Blackwell reminded the committee that Medicaid programs will pay for parent training and necessary environmental modifications. Dr. Boyle noted that questions addressing safety issues had been added to the Survey of Children with Special Health Care Needs to be released in 2011, which will provide useful data. Dr. Insel recommended creating a document to communicate safety needs to the HHS Secretary.
The CLASS Act – Dr. Richard Frank, Deputy Assistant Secretary for Policy and Evaluation - Department of Health and Human Services
Dr. Richard Frank, Deputy Assistant Secretary for Policy and Evaluation - Department of Health and Human Services, gave an overview of the CLASS Act (Community Living Assistance Services and Supports). The CLASS Act is a new voluntary national insurance program to help working adults finance services and supports they may need for long-term care in the event they become disabled. The CLASS Act is part of the Affordable Care Act and would allow employees to pay a monthly premium that would entitle them to monthly cash payments in the event of long-term disability. Participants could use this money to buy ramps and other equipment, pay for in-home care providers, and other goods and services that promote self-sufficiency. The CLASS Act was championed by the late Senator Ted Kennedy and includes a budget of approximately $100 million.
Employers can choose to enroll their employees, who then have the opportunity to opt out if they do not wish to participate. An alternative process for enrollment will be set up for individuals who are self-employed or work for a small business, Dr. Frank said. Benefits are designed to support independence and self-sufficiency and are scaled to the level of functional impairment (with a minimum rate of $50/day). The money is managed electronically and recipients can pay for services directly or withdraw cash from ATMs. The program is meant to offset the long-term spending costs for those receiving Medicare benefits.
To be eligible for the CLASS Act, premiums must be paid consecutively for at least five years and the individual must have earned at least $1,100 annually (one-quarter of social security benefits). The recipient must be unable to perform two or three activities required for daily living, as determined by a health professional. The cost of premiums will depend upon the age of enrollment but cannot reflect pre-existing medical conditions. Premiums continue after the participant becomes disabled (special dispensation is available for those who fall below the poverty line). Dr. Frank talked about the difficulty in maintaining solvency for a voluntary program with little underwriting. He also noted that employers typically do not collect the type of information needed to determine eligibility and that there is a need for better measures to assess less well-defined disabilities such as reoccurring mental illnesses.
Questions and Comments from the Committee
Dr. Insel asked what the CLASS Act would mean to the parent of a 16-year-old with autism who is severely disabled and Dr. Frank clarified that the CLASS Act does not apply to minors, only working adults with at least $1,100 of yearly income. Ms. Blackwell asked what type of services would be available to a 21-year-old with high-functioning autism. Dr. Frank said that benefits could be spent on a variety of services and supports including personal attendants, help with transportation, and assistive technologies. Mr. Ne'eman asked what would be done to ensure that benefits would be distributed in a timely manner and not become the drawn-out process associated with other Federal programs. Dr. Frank clarified that the CLASS Act was run through an independent office within HHS and was not operated through the Aging and Disability Resource Centers. Dr. Frank explained that the assessments process used in the CLASS Act was not modeled on the Social Security Act assessment process. The CLASS Act includes language about the speed at which assessments must be made. He likened their assessment process to that seen for private long-term care insurance, where a trained nurse will go to the client's home and quickly conduct the evaluation of impairment. He said that standards for cognitive impairment still need to be established for the program. Ms. Singer asked if there was any concern that requiring employers to participate in the program would serve as a disincentive to hire people with disabilities. Dr. Frank said that the program was voluntary for both the employer and the employees. He directed people to HealthReform.gov for more information about the CLASS Act. 1
Neural Signatures of Autism – Dr. Kevin Pelphrey, Harris Associate Professor of Child Psychiatry at the Yale Child Study Center
The committee then heard from Dr. Kevin Pelphrey, who serves as the Harris Associate Professor of Child Psychiatry at the Yale Child Study Center. He noted that in addition to being a researcher, he is also the father of a two-year-old and a seven-year-old on the spectrum. Dr. Pelphrey explained that his lab uses neuroimaging tools and tools of cognitive neuroscience (including imaging genomics, functional magnetic resonance imaging, eye tracking and virtual reality) to understand the brain basis of ASD. Currently, his work focuses on social perception deficits in people with ASD. Recent studies in the field have identified specific brain regions that respond to socially relevant information (e.g., eye movements, facial expression, hand gestures, etc.). These implicated regions include the superior temporal sulcus, amygdala, orbital frontal cortex, and the fusiform face area. He reviewed the characteristic deficits in autism which include problems with social interaction, deficits in communication, and repetitive and stereotyped patterns of behavior. His early work related to tracking facial processing in high-functioning adults with ASD. A slide of viewing patterns illustrated that the adults with ASD ignored core facial features that were focused on by typically developing subjects.
Dr. Pelphrey then spoke about a study he conducted that identified that the superior temporal sulcus (STS) responds to biological motion. Typically developing college students were shown images of biological motion (person walking) and non-biological motion (clock pendulum swinging) while brain scans were taken. The researchers found that the superior temporal sulcus was strongly activated by biological motion and not by general motion. By comparison, a nearby brain region known to process general motion responded to all of the moving figures. Dr. Pelphrey then designed an experiment to test whether the STS is sensitive to inferences about other people's actions. A woman reacts positively to seeing a cup then reaches for it (congruent action). In another scenario, she reacts positively toward the cup but then reaches for the opposite cup (incongruent action). Dr. Pelphrey explained that the STS region will always react more strongly to the incongruent action indicating it is responsible for processing underlying context and psychological disposition in linking the emotional expression with the subsequent action. Another study demonstrated that children with ASD are unable to connect eye gaze with underlying motivation. When asked what sort of candy a cartoon face wanted, they usually could not correctly identify that the cartoon wanted the candy he was looking at. The study of incongruent and congruent action was repeated with adults on the spectrum and, interestingly, fMRI scans showed that the STS region responded equally to both congruent and incongruent behaviors. Based on these results, the researchers concluded that they may have identified the brain mechanism in ASD responsible for dysfunction in social perception. He did note that there was a large amount of variation in the imaging data and spoke about how some of this was attributable to differences in the length of the serotonin transporter gene, which has been linked to social outcomes in ASD.
Dr. Pelphrey then spoke about how the team had trained children with ASD to lie still in the scanners (e.g., watching movies in the scanner, painting cartoon characters onto the exterior). He commented that the majority of subjects used in imaging studies are high-functioning, but noted that his research team was able to successfully scan a non-verbal 12-year-old with an IQ of 20. Using fMRI, Dr. Pelphrey conducted a study of biological motion perception in children with ASD (ages 4-17), their unaffected siblings, and matched controls. The children with ASD and their siblings were part of the Simons Simplex Collection, a group comprised of families where only one child in the family is affected. As a result, the siblings were assumed not to carry the genetic risk of idiopathic (unknown origin) autism. Interestingly, both children with ASD and their unaffected siblings had similar regions of dysfunction in the brain. These trait markers represent an endophenotype for the risk of developing ASD, Dr. Pelphrey said. They also identified potential compensatory regions in unaffected siblings, focusing on a portion of the right posterior STS and a portion of the ventral medial prefrontal cortex. These regions are active only in the unaffected siblings and may help to explain how similar dysfunction in other brain regions did not result in ASD. In order to look for candidate genes, Dr. Pelphrey plans to work with Dr. Matthew State to identify sibling pairs that are the most dissimilar in their brain scans and conduct whole-genome analyses.
Finally, Dr. Pelphrey described a study designed to test response to rule violation and social exclusion. Adolescents with ASD were found to have an equivalent level of neurological response to social exclusion compared to their typically developing peers. (They were never thrown to during a virtual ball game.) However, they showed a very strong response to rule violation in the region of the brain responsible for feelings of disgust (the insular cortex or insula). This region is only active during social exclusion for typically developing individuals. Dr. Pelphrey summarized that an autistic person's emotional reaction to a rule violation (throwing the ball to the wrong player) may be similar to experiencing a social slight for a typically developing person.
Dr. Pelphrey is also involved in a longitudinal imaging study of infants' response to communicative and non-communicative sounds. It is a comprehensive infant siblings project involving several hundred infant siblings seen regularly for several years. The children are placed sleeping into the fMRI scanners and exposed to communicative sounds (e.g., infant-directed speech, laughter) and non-communicative sounds (e.g., coughs, walking, water, monkey calls). Dr. Pelphrey acknowledged his funders and his research associates before opening the floor for questions.
Questions and Comments from the Committee
Dr. Marjorie Solomon asked Dr. Pelphrey what role he thought developmental cognitive neuroscience would play in advancing ASD research and developing treatments. Dr. Pelphrey said that understanding brain development in ASD would be critical to understanding the bridge between genetics and behavior. He commented that the brain phenotype emerging from recent studies would help to define a target of treatment. Dr. Dawson noted that doctors had seen success using neuroimaging techniques to identify people at risk for Alzheimer's and starting early treatment before symptoms manifested. She asked whether Dr. Pelphrey predicted that a similar approach would be used one day with ASD. He said that ideally in the future neuroimaging could be used in much the same way. Children would be identified early and the scans could be used to predict which treatments would be most effective. Dr. Fischbach noted that advances in Alzheimer's research were made possible through the collaboration of government agencies, industry, and private foundations to establish imaging standards.
Ms. Sheila Medlam spoke about her son Mason's death on July 26, 2010. Mason, who had autism and was nonverbal, was described as an active five-year-old with a natural inquisitiveness about the world and, particularly, a fascination with water. His family knew that he would wander if given the opportunity and so were hyper-vigilant about his safety, installing multiple locks on every door and monitoring his every move in the house. Ms. Medlam reported that she never slept next to him every night because she was terrified that he would find his way out of their home and "be lost to her forever."
On July 27, 2010, Mason drowned in a pond about a quarter-mile from his family's home after exiting through a screen left slightly open for a window fan. Ms. Medlam said that the police had been notified that the five-year-old had gone missing but were unable to locate him in time. She recounted the events of that day and called for the creation of a "Mason Alert" which would alert the community when a child with a developmental disability went missing. She urged the committee to act quickly to avoid any more senseless deaths as a result of ASD-related wandering.
Ms. Caroline Rodgers spoke about her belief that ultrasounds may contribute to the rise of ASD prevalence over the past twenty years. She discounted the influence of vaccines, air pollution, genetic abnormalities, pesticides, or other potential chemical contributors. She said that the simultaneous increase in autism across the globe pointed to a common environmental factor to which pregnant women had been increasingly exposed: prenatal ultrasound. She said that in 1982 the World Health Organization had identified ultrasound as having potential to cause neurological changes in humans, based on animal studies. These studies found that prenatal ultrasound could disrupt neuronal migration in the offspring of pregnant mice. She asked the IACC to investigate the potential role of prenatal ultrasound in the development of ASD.
Ms. Eileen Nicole Simon presented her theory that improper umbilical cord clamping leads to injury of the auditory processing centers in the brain which manifests as autism. She said that clamping the umbilical cord before the first breath could lead to injury to the mid-brain auditory nuclei from insufficient oxygen. She recommended investigating the effects of early cord clamping, as well as ultrasounds and vaccines.
Ms. Lindsey Nebeker, a self-advocate, recommended increased research on alternative forms of communication. She said that her severely affected 26-year-old brother still had not found an effective form of communication. She also encouraged an increased focus on diagnosing, treating, and providing services to women with ASD. She recounted that while undergoing treatment for anorexia, she realized how the traits of ASD – rigidity, adherence to ritual, and OCD-like behavior – contributed to her eating disorder. She asked that research be conducted on ASD and clinical eating disorders like anorexia and bulimia. She also suggested research focused on people with ASD who self-identify as lesbian, gay, bisexual, or transgender (LGBT).
Ms. Idil Abdull, a Somali mother and co-founder of Somali American Autism Foundation, spoke about potential clusters of autism in the Somali immigrant community living in Minneapolis, Minnesota. She cited a report released by the Minnesota Department of Health in 2009 stating that children born in Minnesota to Somali parents were up to seven times more likely to be diagnosed with ASD during preschool. Ms. Abdull said that affected families tended to have children with moderate to severe autism and would often have multiple children on the spectrum. It is dubbed the "silent disease" because of its pronounced effects in limiting oral communication in the talkative Somali culture. She suggested that autism in the Somali immigrant community in Minnesota may actually be underreported because of language difficulties and the stigma attached to autism.
She asked the IACC to create a national hub for ASD resources to help parents navigate the complex ASD service system. She also asked that interventions and services be culturally and linguistically appropriate. Ms. Abdull said that the Minnesotan Somali population would make a rich study population and asked that more research targeting the group be done.
NICHD Workshop "Disparities in the Identification of Children with Autism Spectrum Disorders," August 19, 2010
Dr. Regina Smith James, Director of the Division of Special Populations at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), spoke about the workshop on the disparities in ASD diagnosis among different social and ethnic groups. The meeting brought together experts in the field who provided research updates and recommendations for addressing the disparities. Dr. Alice Kau, Health Scientist Administrator for the NICHD Intellectual and Developmental Disabilities Branch, reviewed the speakers at the meeting and provided background on disparities in ASD diagnosis. Early diagnosis is critical for receiving early interventions, which have been shown to improve outcome. While early ASD diagnosis remains challenging for all groups, research has shown that children of ethnic minorities and/or low socioeconomic status are screened and diagnosed later than others. Research has also shown that gender-based disparities exist – boys are more likely to be diagnosed than girls when displaying the same characteristics of ASD. Minority families with low resources are less likely to receive diagnosis and services, particularly when the family speaks a language other than English. Finally, disparities are related to unequal application and dissemination of knowledge, rather than with lack of information, Dr. Kau said.
The purpose of the meeting was to examine the barriers related to the disparities in diagnosis and formulate an approach to reducing disparities. Barriers identified in the health care system include the disparity in reimbursements between different insurance plans, cultural and language barriers, and the lack of buy-in among providers for autism screening. Physicians are also unwilling to give bad news particularly when they have little knowledge about treatment and services. Barriers among families include lack of awareness about developmental milestones, differing cultural expectations of development, and denial of the child's problem. Barriers related to the research community that were identified at the meeting included the lack of a cross-culturally validated broadband screening tool and lack of reliable biomarkers for screening and diagnosis.
The meeting attendees identified many needs to eliminate existing disparities – more clinicians, researchers of diverse background and language, and autism researchers and service providers with a greater presence in the community. A wider variety or screening tools are needed and autism screening must be mandated and reimbursed, the said.
Several recommendations were put forward including establishing a clear and more systematic route for receiving diagnostic and treatment services after screening. The group also recommended obtaining more information on different cultural views on ASD and more information on how clinicians should present the results of screening and diagnosis to patients of different cultures. They also recommended educating the medical communities on ASD symptoms and the value of formal screening. Research into racial barriers to screening, diagnosis, and services should be conducted and a better sense of the number of false negatives during autism screening is needed. The workshop members also recommended publishing all tools for families in multiple languages and increasing the parent training in implementing meaningful interventions at home.
"Genetic Risk Factors for Autism Spectrum Disorders: Translating Genetic Discoveries into Diagnostics" Symposium, September 1-2, 2010
Dr. Geri Dawson introduced Stephen Scherer, Director of the Centre for Applied Genomics, who helped to organize the symposium on the translation of genetics into diagnostics held September 1-2, 2010. About 100 experts convened to discuss related scientific issues, healthcare and regulatory issues, clinical genetics, and community impact. Panelists were asked to consider whether the science of autism was ready for translation to clinical diagnostics and how stakeholders can work together to accelerate progress. They discussed how rapid advances in whole genome sequencing will soon make the use of microarrays standard clinical practice. The challenge will be to interpret this data, deliver the information to create knowledge, and generate value for the families who are seeking the information.
Dr. Scherer said that during the wrap-up sessions the panelists agreed that the science had sufficiently advanced to the stage where genetic discoveries are being translated into diagnostics. Tests can now identify highly penetrant genes that make up an estimated 10 percent of ASD cases (SHANK2, SHANK3, neurexin-1, neuroligin-3 and 3, and rare inherited copy number variations). The panelists estimated that 14,000 genomes would have to be sequenced to fully understand the genetic basis of ASD, well beyond the 1,000 genomes being sequenced in the current NIH-led project. The panelists also noted that genetic studies of ASD often had insufficient or improper use of controls and that there must be more investment in generating data from control groups.
The group also recommended that the scientists making the initial genetic discoveries need to hold an advisory role during the development of the diagnostic test and interpretation of the data. Educational efforts initially need to be focused on the clinicians ordering the tests. Ultimately, more data is needed and the group recommended conducting a very large international sequencing project. The panelists also suggested developing a specific database tracking the population frequencies of autism variants and the attributable risk. Dr. Scherer then discussed the importance of developing appropriate communication strategies to educate and inform the community about genetic tests for ASD.
Dr. Dawson spoke briefly about the clinical importance of genetic diagnostics for ASD. Early detection could lead to earlier interventions, resulting in better outcomes. Certain rare variants are also associated with specific co-occurring conditions (e.g., epilepsy, gastrointestinal issues) and people would have more information about their potential risk factors. Genetic testing may also lead to personalized treatment options in the future. Understanding the genetic etiology could aid the development of treatments targeted for specific subpopulations.
NIEHS Workshop "Autism and the Environment: New Ideas for Advancing the Science," September 8, 2010
Dr. David Armstrong, Senior Investigator and Chief of the Laboratory of Neurobiology at the National Institute of Environmental Health Sciences (NIEHS), summarized the meeting organized by NIEHS and Autism Speaks on autism and the environment held October 22, 2010. Researchers and members of the ASD community came together to discuss novel opportunities to accelerate research on environmental factors and ASD. The environment is defined broadly and can include industrial and agricultural chemicals, pathogens, nutrition, the gut microbiome, and pharmaceuticals. Dr. Armstrong noted that genes must always be considered within the environment – specific genes may make people more susceptible to damage from an environmental exposure.
The meeting participants identified several challenges to studying ASD and the environment including the lack of chemical exposure data from humans, a lack of cellular and molecular phenotypes in humans, and the lack of animal models and cellular assays for high-throughput screening of toxicants. To illustrate the scope of the problem, he noted that proving something is carcinogenic costs $2 million and involves identifying the growth of a tumor (an outcome is much more clear-cut than identifying changes in social behaviors). Currently, NIH is funding a project to develop a strain of inbred mice to more easily identify genes associated with environmental exposures. Dr. Armstrong also spoke about the Tox21 program which has developed robotics to screen 1,500 suspected chemicals in a cell model. He emphasized the importance of using a full range of model organisms, citing the importance of Drosophila and C. elegans in studying Parkinson's disease. He reviewed the strategies for moving forward identified at the meeting including collecting better exposure data, better informatics to integrate the data, and better model systems to study the mechanism behind the effects of toxicants on the synapses and immune response. They also cited the need for better infrastructure to share large data sets and train multidisciplinary teams.
Simons Foundation Autism Research Initiative (SFARI) Annual Meeting, September 12-14, 2010
Dr. Gerald Fischbach, Scientific Director of the Simon's Foundation Autism Research Initiative, noted that the foundation's goal is to improve the lives of people on the spectrum. Currently, their research is focused on genetics, molecular mechanisms, and how these translate into behavior and clinical phenotypes. Dr. Fischbach summarized the second annual meeting of the Simon Foundation Autism Research Initiative (SFARI) held September 12-14 in Washington, DC. He presented a list of speakers at the meeting and reviewed presented results that he found particularly interesting.
Copy number variants (CNVs) are microdeletions and duplications of DNA that have recently been identified as major sources of variation in the human genome and have been associated with ASD. He presented an example of a de novo or spontaneous mutation which arose in the child with ASD but was not present in either parent. He then presented a case where the affected child had duplicated a segment of DNA found in his parents' genome. Dr. Fischbach said that individual CNVs occur in approximately 1 in 200 cases of ASD but that multiple CNVs may contribute to ASD and as a result be quite common. Dr. Evan Eichler estimated that large CNVs may account for 10 percent of all idiopathic cases of ASD (those with unknown origin) and that smaller CNVs may account for another 10 percent. Small de novo mutations may account for as much as 50 percent of all cases.
Dr. Fischbach noted Dr. Tom Sudhof's work identifying mutations in neurexins and neuroligins, which instruct synapses (the junctions between nerve cells) to become excitatory or inhibitory. He also mentioned Dr. Randy Buckner's research collecting fMRI scans of typically developing individuals, which may be used to understand typical brain variation in the typical population. He also noted Dr. Ben Philpot's work identifying a gene (Ube3a) that is deleted in Angelman syndrome and duplicated in cases of ASD. Dr. Philpot is working to develop a pharmaceutical intervention that will activate the Ube3a gene in Angelman's and deactivate the gene in ASD.
Research Update: Study of Health Outcomes in Autistic Children and Their Families
Dr. Ann Wagner, Chief of the Neurobehavioral Mechanisms of Mental Disorders Branch at the National Institute of Mental Health, announced that the Lewin Group had been awarded a two-year, $4.2 million contract to study the health outcomes of children with ASD and their families. The goal of the study is to use existing administrative data to further to understand variables related to diagnosis, health, and healthcare utilization. She introduced the team leads and described the composition of the datasets which were taken from commercial and employer-based health care insurance companies. The datasets include claims data, electronic medical records, pharmacy data and sociodemographic information from more than 70 million Americans under the age of 65. Family members can be linked within the dataset and people can be tracked longitudinally from 2001 to 2009.
The aims of the study are to identify a large and diverse number of children with ASD, their family members, and a control group. The ASD diagnosis will be validated from their medical information and the researchers will compare the health trajectories of the children with ASD and their families. Dr. Wagner said that the study would also be used to describe and compare the use of health services between families with and without a child with ASD. One aspect of the study is also to understand what relevant data on risk factors exist within a claims dataset.
Dr. Wagner noted that the Lewin Group had convened an External Advisory Committee consisting of individuals with ASD, parents of children with ASD, care providers, and researchers to provide their expertise and guidance during the project. NIMH also held a stakeholders meeting on October 29, 2010 to discuss the study and receive input from the community about the particular health issues that are of greatest concern.
Ms. Blackwell asked if the study would include information about behavioral health and Dr. Wagner explained that the datasets contained all medical insurance claims including those for behavioral health services.
Data Sharing Update: National Database for Autism Research (NDAR)
Dr. Michael Huerta, Director of the National Database for Autism Research (NDAR), spoke about recent progress increasing the quantity, quality, and usability of the data in NDAR. Quality and usability has been promoted by developing standards such as data dictionaries and the use of Global Unique Identifier (GUID) to anonymously identify individual research subjects across multiple studies. The quantity of data within NDAR has been increased by federating with other networks and programs and now includes data from 45,000 research subjects across 60 NIH projects. Dr. Huerta announced that as of October 2010, NDAR is sharing data from more than 10,000 research subjects with approved researchers. That number is expected to grow to 14,000 by April 2011 as NDAR begins to share more data from the pediatric MRI data repository and projects funded by the American Recovery and Reinvestment Act (ARRA). Dr. Huerta announced that they are poised to meet the Strategic Plan objective calling for the contribution of data from 90 percent of newly initiated projects by 2012.
Ms. Singer noted that the majority of the data was being contributed by NIH and private funders and asked whether agencies like the Centers for Disease Control and Prevention (CDC), Health Resources and Services Administration (HRSA), Centers for Medicare and Medicaid (CMS), and the Department of Education were being asked to contribute. Dr. Huerta said that they planned to federate with these sources in the near future. Dr. Fischbach asked if all NIH-funded investigators studying autism were assigning GUIDs and was told that the expectation was that all were contributing data to NDAR.
Committee Business: Services Workshop Update
Ms. Blackwell, Co-chair of the Services Subcommittee, described the Services Workshop to be held November 8, 2010 at the Rockville Hilton. She reminded the members that the meeting would be webcast and noted that the purpose of the meeting was to inform the development of policy recommendations for Secretary Kathleen Sebelius. The meeting could also be used to inform the update to services portions of the Strategic Plan and to explore what quality systems and practices are working in the states. Ms. Blackwell then reviewed the scheduled speakers. Dr. Nancy Thaler, Executive Director of the National Association of State Directors of Developmental Disabilities Services (NASDDDS), would speak in the morning, along with Dr. Bill East, Executive Director of the National Association of State Directors of Special Education (NASDSE), and Dr. Charlie Lakin, who runs the National Core Indicators Project for NASDDDS which looks at quality of life indicators for people with developmental disabilities. Mr. Michael Head, Director of the Mental Health and Substance Abuse Administration, Michigan Department of Community Health, and Dr. James Conroy from the Center for Outcome Analysis, Inc. in Havertown, Pennsylvania, would talk about self-direction and self-determination. Dr. Don Clintsman, Assistant Director for the Division of Developmental Disabilities, Washington State Department of Social and Health Services, would talk about the standardized assessment tool used in Washington state to assess and manage the needs of people with developmental disabilities. Ms. Kevin Ann Huckshorn, Director of the Division of Substance Abuse and Mental Health, Delaware Health and Social Services, would speak about reducing the use of seclusion and restraint and direct service workforce training would be addressed by Ms. Carrie Blakeway of the Lewin Group and Ms. Erika Robbins from the Office of Ohio Health Plans. Housing options would be addressed by Mr. Sheldon Wheeler, Director of Housing Resource Development for the Office of Adult Mental Health, Maine Department of Health and Human Services and Mr. Joseph Wykowski, Executive Director of Community Vision in Portland, Oregon. The panel on peer supports would include Dr. Lisa Crabtree, Research and Grants Director for the Center for Adults with Autism Spectrum Disorders at Towson University, Mr. Jim Sinclair, Co-founder of the Autism Network International, and Ms. Julie LaBerge, Director of Pupil Services for the Bonduel School District in Wisconsin. Finally, Mr. John Martin, Director of the Ohio Department of Developmental Disabilities would speak about how the state has worked toward systems integration.
Ms. Blackwell then presented a long list of additional issues that could be addressed at future meetings: diversity and cultural sensitivity, recreational opportunities, family support, home and community-based characteristics, employment/vocational issues, including benefits counseling, early childhood, infrastructure, person-centered policies and planning, medical and health homes, quality measures for children and adults, the expanding of managed care delivery systems in services and supports, mental health parity, criminal justice diversion, post-secondary education, rebalancing the long-term services and supports system, community asset-building, and environmental and home modifications.
Ms. Blackwell noted that they hoped Mr. Tom Perez or Mr. Sam Bagestos from the Department of Justice would be able to speak during the workshop lunch about issues related to the Olmstead Decision and the Americans with Disabilties Act. Ms. Grossman added that everyone attending the workshop was committed to systems change and that with their input, the Services Subcommittee could put forth a valuable set of policy recommendations for the Secretary. Dr. Insel asked whether it would be feasible for the Subcommittee to present a draft of some of these recommendations at the December 14, 2010 meeting and Mr. Grossman said that it might be possible if the subcommittee worked quickly. Dr. Insel noted that the IACC had advanced the ASD research agenda considerably and that there were fewer deliverables related to services. He urged the Subcommittee to press forward and produce a set of policy recommendations quickly. Ms. Redwood added that these services recommendations could be critical to the reauthorization of the Combating Autism Act. Ms. Resnik noted that it would be important to define the process used to develop the recommendations. The subcommittee discussed the need for research to inform services practice and the need to build an evidence base to advocate for insurance coverage and use funds effectively.
Dr. Della Hann informed the committee that the full text responses to the IACC Request for Information (RFI) open to the public from June 18, 2010 through July 31, 2010 were available on the IACC web site.2 The RFI requested public input on the 2010 Strategic Plan for ASD Research and asked respondents to identify areas of the Plan that should be deleted or modified and gap areas where more information was needed. The RFI also included an open- ended section where any other information could be provided. In total, fifty-four individuals responded.
Ms. Redwood noted that the structure of the RFI did not directly relate to the update because the committee had decided to produce addendums to each chapter. She suggested that in the future the RFI be more tailored to the format of the update.
Portfolio Analysis Update
Dr. Hann reviewed the portfolio analysis that had been performed at the request of the committee. The portfolio analysis is a comprehensive assessment of the 2009 ASD research portfolios of major Federal agencies and private organizations. A similar analysis had been performed on the 2008 portfolios to inform the 2010 Strategic Plan. The activity informs the committee and stakeholders about the funding landscape and highlights gaps and opportunities in the field. Dr. Hann reviewed the six Federal agencies and seven private organizations that had contributed to the report. Each was asked to provide information on the number of ASD research projects that had been funded, the total amount contributed, and how each project aligned with the IACC Strategic Plan. To accomplish this, funders were asked to code each project according to Plan objectives. Dr. Hann presented a chart that ranked the organizations based on total ASD research funding. The National Institutes of Health contributed the most ($196 million), followed by the Simons Foundation ($51 million). Dr. Daniels explained that the asterisk next to the Department of Defense indicated that the amount included projects from 2008 that had not been included in the previous year's analysis due to a difference in fiscal year periods. Dr. Insel noted that NIH's autism budget figure included funds from the American Recovery and Reinvestment Act. Dr. Hann showed the breakdown of ARRA funding for ASD research, which represented 27 percent ($64 million) of Federally-funded ASD research in 2009 and 20 percent of the overall total. The bulk of 2009 ASD research funding (33%) was dedicated to risk factors (Question 3), followed by research into the underlying biology (Question 2 with 21%), treatments and interventions (Question 4 with 19%), and diagnosis (Question 1 with 13%). The remaining funding was divided among research on infrastructure (Question 7 with 5%), services (Question 5 with 3%) and lifespan issues (Question 6 with less than 1%). Seven percent of the research was not specific to any Strategic Plan question. ARRA funding was distributed along much the same pattern with the majority of funding going to risk factor studies followed by underlying biology.
Dr. Hann then reviewed how funding aligned with specific Strategic Plan objectives. The committee was given a handout detailing how much funding was allotted to each objective and coded red, yellow, or green based on how much of the requested budget had been distributed in actuality. New objectives to the 2010 Plan were indicated. For Question 1, three objectives had been coded green, three yellow, and one red. Dr. Insel raised the objection that they were reviewing 2009 spending and that items that were red could have been added to the 2010 Plan to fill a gap area. Objectives that had been fulfilled in 2009 (green items) should probably not appear in the Plan because they were already ongoing. Dr. Hann summarized the coding for the remaining chapters available for viewing here: (PDF – 1.68 MB). She noted that tracking changes in funding over time becomes difficult when the Plan changes significantly every year.
Questions and Comments from the Committee
Ms. Redwood commented that the three projects categorized under Question 3, short-term objective B (markers of environmental exposure in biospecimens) seemed to be misplaced. She noted that from the project titles they looked like genetic studies and that if they were reclassified the question coding would change from green to red (indicating a gap area). Dr. Hann reminded the committee that all the classifications had been done by the funders themselves. Ms. Redwood also noted several underfunded objectives and asked how the committee could bring attention to those areas. Dr. Dawson commented that identifying gap areas should be used to direct funding priorities. Dr. Koroshetz noted that the portfolio was useful for NIH institutes to identify gaps in their portfolios but cautioned that research is not directed from above but usually rises up from individual investigators. Applications that receive a better score are likely to be funded even in a lower priority area while applications that receive a poor score are not likely to be funded even if they address a spotlighted area. The subcommittee discussed their concerns that the projects might not be coded accurately. The committee requested that the Office of Autism Research Coordination review the 15 projects submitted by DoD and see if they could be code those that had been identified as not specific to any objective. They were also asked to review all projects to identify those that seemed to be obviously miscoded. Dr. Dawson noted that at Autism Speaks research projects can now be coded in multiple categories.
Discussion: Updating the Strategic Plan
Dr. Insel described the recommendations from the Planning Subcommittee on the 2011 Strategic Plan update. The group had met on October 6, 2010 and recommended tweaks to the Plan based on significant research advances, the Request for Information, and the gap areas identified in the portfolio analysis. The subcommittee considered three options for updating the Plan: (1) developing line edits to the text, (2) adding a separate update section to the end of each chapter, or (3) doing both. The group voted to create an addendum to each chapter addressing what was learned in the past year, what gap areas have emerged, and what new opportunities or objective exist. Draft addendums for chapters 1-4 had been written as examples. Dr. Insel noted that they included more than 30 new objectives. The full committee was asked whether they approved of this updating plan.
When asked how the addendums had been developed, Dr. Dawson said that she had tried to meld the suggested edits she had received from the other subcommittee members into a single version. Ms. Blackwell said she was concerned with the number of new objectives and Dr. Insel noted that the number of objectives had increased from 40 in 2009 to 62 in 2010 and potentially over 100 in 2011. The Plan is in danger of losing its sense of priority if it contains too many objectives, he cautioned.
Ms. Redwood noted that a substantial percentage of research in the 2009 Portfolio Analysis related to underlying biology was not specific to an objective. To remedy this, the group had gone into Question 2 and developed questions which they felt captured the uncategorized studies. Dr. Insel asked whether the committee wanted to add objectives related to research areas that were already being fulfilled or whether they wanted to find an alternate way to account for them. Mr. Ne'eman said that objectives should be added to address policy reform brought about by the Affordable Care Act. Dr. Insel proposed noting these changes in the addendum related to progress in the past year.
Ms. Resnik stated that have 100 objectives in the Strategic Plan would make it unmanageable and make implementation harder. Dr. Judith Cooper noted that a laundry list of objectives would not help program officials identify the priority areas, particularly in times of scarce resources. The subcommittee discussed how multiple objectives could be consolidated and whether identifying a set number of objectives would help to focus the Plan. Mr. Ne'eman asked when past objectives could be removed from the Plan and Dr. Insel noted that many projects initiated in 2009 would not have reached completion. Dr. Cooper proposed limiting each chapter to three new objectives but several subcommittee members objected saying that this would be limiting and represented a rather arbitrary number. Ms. Resnik recommended agreeing on a process for developing new objectives before setting a specific number. The committee discussed which studies should be cited in the addendum as advances and agreed that the bar should be set high to include only very significant studies. Dr. Insel summarized that the committee was largely in agreement about using addendums to identify significant advances in the past year and new opportunities but wanted to limit the expansion of the Plan without setting an exact figure on the number of new objectives. New objectives will be put in only if there is an absolute need. The subcommittee will draft addendums for committee review at the December 14, 2010 meeting.
Public Comments Discussion Period
Dr. Insel noted that the public comments that day had been particularly rich and diverse before asking the committee members for their input. Mr. Ne'eman commented on the need for culturally and linguistically competent service delivery as mentioned during the presentation on the Somali community in Minnesota. He also suggested working with the Department of Justice to understand how safety programs for people with Alzheimer's disease could be modified for the ASD community. Mr. Grossman commented that the Autism Society had been working with Alzheimer's organizations to address ASD-related wandering and noted that safety issues across the lifespan were not receiving adequate attention. Dr. Insel asked the committee for ways that they could quickly and forcefully address the issue of wandering and Ms. Redwood recommended drafting a letter to the Health Secretary and establishing a subcommittee to address safety issues. She said that conveying the need for a wandering diagnostic code to the entity with the authority to establish such a code would also be important.
Ms. Blackwell noted that health and safety assurances are required in home and community-based waiver programs. Dr. Dawson commented that the committee had been presented with concrete recommendations related to combating ASD-related wandering and that the IACC needed to act. Mr. Ne'eman seconded Ms. Redwood's recommendation that a new subcommittee be formed and recommended that it address additional safety issues including bullying and restraint and seclusion. Ms. Singer moved to establish a subcommittee on safety immediately and the motion was seconded by Ms. Redwood and Mr. Ne'eman. Ms. Singer stated that the first charge of the newly formed subcommittee should be to draft a letter to the Secretary outlining recommendations to address wandering. Dr. Insel said that the new committee might want to explore how the recommendations could be implemented and contact the appropriate agencies such as CDC and HRSA. Dr. van Dyck said that some of the activities related to ensuring the safety of people with ASD would fall within HRSA's existing legislation and noted that their anti-bullying web site could include specific mention of people with ASD.
Mr. Ne'eman said that the Office on Disability would also play a critical role and Ms. Blackwell noted that the Substance Abuse and Mental Health Services Administration (SAMHSA) would as well. The committee took a formal vote on creating a subcommittee dedicated to ASD safety issues which was unanimously approved. The committee discussed what the subcommittee would specifically address and Dr. Marjorie Solomon reminded the others that the presenters had called for "a subcommittee focusing in safety issues affecting the ASD community addressing external causes of death, wandering and elopement, restraint and seclusion in schools, anti-bullying education, support for families at the breaking point, and education for law enforcement." Dr. Insel urged the subcommittee to quickly draft a letter to the Secretary. Dr. Dawson asked whether other organizations should sign on to the letter to convent of breadth of community support. Dr. Insel said that supplementary letters from other organizations could potentially be bundled with the IACC letter. Mr. Lee Grossman suggested that Sharon Lewis of ACF join the subcommittee which was suggested to also have representatives from HRSA, CDC, and SAMHSA. Public members Ari Ne'eman, Alison Singer, Lee Grossman, and Lyn Redwood volunteered to serve on the subcommittee.
The committee discussed studying the Somali population in Minnesota and Dr. Boyle said that the CDC had been supporting the Minnesota Department of Health in their efforts. They are currently working with the Minneapolis public school system to update the prevalence statistics and are exploring cultural issues around screening, diagnosis, and service provision. She said that that representatives of the Minnesota Department of Health had been asked to speak at an upcoming meeting. Dr. Insel said that experts he had spoken with felt that there was a true five to sevenfold increase in the Somali immigrant community. He noted that this may be a unique opportunity to understand environmental factors that may contribute to ASD and suggested potentially supplementing a CHARGE study or other ongoing project to investigate. Ms. Redwood asked the committee to bring more urgency to addressing the Somali issue, noting that an E. coli outbreak would be acted upon more quickly. Dr. Dawson said that Autism Speaks had spoken with NIEHS and an Autism Speaks researcher, Dr. Michael Rosanoff, was currently developing a report on what is known about Somali populations and ASD. Mrs. Abdull urged the CDC to play a larger leadership role because she said the Minnesota Department of Health lacks the budget and capacity.
Dr. Boyle explained that the CDC works through state health departments and noted that the initial report on ASD prevalence in the Minneapolis public school system was much lower than anticipated. As a follow-up, the CDC recommended assessing the ASD prevalence in the entire Minneapolis area. Dr. Armstrong noted that rapid response to an E. coli outbreak was possible because the cause was known. With the causes of ASD unknown, it is difficult to respond because it is unclear what exposures must be measured. Mr. Ne'eman asked Ms. Abdull what steps could be taken to help the Somali community access supports. Ms. Abdull asked that Medicaid expand waivers to eliminate waitlists and offer better coverage for behavioral interventions. She stated the need to improve awareness and offer culturally appropriate services. Ms. Blackwell clarified that the Federal government cannot control which optional programs states choose to participate in and with the budget crisis, states are choosing to reduce service programs and establish waitlists. She said that Minnesota offers five home and community-based waivers and that if people feel they are unable to access to services because of a cultural or linguistic issue, they should file a grievance with Medicaid. Dr. Insel summarized that Dr. Boyle, Dr. Dawson and Dr. Birnbaum would meet and create a plan of action for investigating ASD in the Somali immigrant community.
Mr. Redwood noted that several environmental factors had been mentioned during public comment (ultrasound, cord clamping, soy) and recommended incorporating them into the Strategic Plan update. Mr. Ne'eman recommended incorporating other issues that were raised during the public comment period such as co-occurring mental health issues and issues related to sexual orientation and gender identity.
Closing Comments and Adjournment
Ms. Redwood noted that the Planning Subcommittee would need additional time to work on updating the Strategic Plan and Dr. Insel said that another meeting would be scheduled. The meeting was then adjourned.
These minutes of the IACC Full Committee were approved by the Committee on December 14, 2010.
I hereby certify that this meeting summary is accurate and complete.
Thomas Insel, M.D.
Chair, Interagency Autism Coordinating Committee
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- 2010 Strategic Plan Update for Chapter 1 (PDF – 55 KB)
- 2010 Strategic Plan Update for Chapter 2 (PDF – 118 KB)
- 2010 Strategic Plan Update for Chapter 3 (PDF – 104 KB)
- 2010 Strategic Plan Update for Chapter 4 (PDF – 111 KB)
- 2010 Request for Information (RFI) Responses
- Draft: 2009 Portfolio Analysis (PDF – 1.68 MB)
- Draft: 2009 Portfolio Analysis: Projects and Funding (PDF – 968 KB)
Some of the documents listed above are draft versions. The final Section 508 compliant versions of the documents will be posted shortly.
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- Meeting Transcript (PDF - 746 KB)
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- IACC Meeting Slide Set (PDF – 549 KB)
Alexa Posny, Ph.D., Assistant Secretary of Special Education and Rehabilitative Services, U.S. Department of Education
Wandering & Autism: The Need for Data and Resources (PDF – 1.2 MB)
Wendy Fournier, President, National Autism Association; Lori McIIwain, Board Chair, National Autism Association
Neural Signatures of Autism (PDF – 13.5 MB)
Kevin Pelphrey, Ph.D., Harris Associate Professor of Child Psychiatry, Child Study Center and Child Neuroscience Lab, Yale University
The Elephant in the Room (PDF – 891 KB)
Caroline Rodgers (Public Comment)
Alice Kau, Ph.D., Health Scientist Administrator, Intellectual and Developmental Disabilities Branch, Eunice Kennedy Shriver National Institute of Child Health and Human Development; Regina Smith James, M.D., Director, Division of Special Populations, Eunice Kennedy Shriver National Institute of Child Health and Human Development
David Armstrong, Ph.D., Senior Investigator, Chief of the Laboratory of Neurobiology, National Institute of Environmental Health Sciences
Gerald Fischbach, M.D., Scientific Director, Simon's Foundation Autism Research Initiative
Ann Wagner, Ph.D., Chief, Neurobehavioral Mechanisms of Mental Disorders Branch, National Institute of Mental Health
Michael Huerta, Ph.D., Director, National Database for Autism Research, National Institute of Mental Health
Workshop Update: Services Subcommittee (PDF – 53 KB)
Ellen W. Blackwell, M.S.W., Co-Chair of the Services Subcommittee, Centers for Medicare & Medicaid Services
We will post the final Section 508 compliant versions of the documents shortly.
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