Minutes of the Interagency Autism Coordinating Committee (IACC) Meeting on April 11, 2011
The Interagency Autism Coordinating Committee (IACC, also referred to as "the committee") convened a meeting on Monday April 11, 2011 from 9:00 a.m. to 5:00 p.m. at the Ronald Reagan Building and International Trade Center in Washington, D.C.
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.
Participants: Thomas Insel, M.D., IACC Chair, National Institute of Mental Health (NIMH); Susan A. Daniels, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC), NIMH; James Battey, M.D., Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD); Ellen Blackwell, M.S.W., Centers for Medicare & Medicaid Services (CMS); Coleen Boyle, Ph.D., Centers for Disease Control and Prevention (CDC); Josephine Briggs, M.D., (representing Dr. Francis Collins), Henry Claypool, HHS Office on Disability; Geraldine Dawson, Ph.D., Autism Speaks; Lee Grossman; Gail Houle, Ph.D., U.S. Department of Education (ED); Yvette Janvier, M.D., Children's Specialized Hospital; Jamie Kendall, Administration for Children and Families (ACF) (representing Sharon Lewis); Cindy Lawler, Ph.D., (representing Dr. Linda Birnbaum), National Institute of Environmental Health Sciences; Laura Mamounas, Ph.D., National Institute of Neurological Disorders and Stroke (NINDS) (representing Walter Koroshetz, M.D); Christine McKee, J.D.; Ari Ne'eman, Autistic Self Advocacy Network (ASAN); Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Denise Resnik,* Southwest Autism Research & Resource Center (SARRC); Stephen Shore,* Ed.D., Autism Spectrum Consulting and Adelphi University; Alison Tepper Singer, M.B.A., Autism Science Foundation (ASF); Marjorie Solomon, Ph.D., M.B.A., University of California, Davis and M.I.N.D. Institute; Peter van Dyck, M.D., M.P.H., Health Resources and Services Administration (HRSA)
*Note: Attended by phone.
Call to Order and Opening Remarks
Dr. Insel welcomed all the participants to the April meeting, held during Autism Awareness Month. He then introduced Mr. Michael Strautmanis, Deputy Assistant to President Obama and Counselor for Strategic Engagement to the Senior Advisor of the Executive Office of the President.
Michael Strautmanis, J.D., Deputy Assistant to the President and Counselor for Strategic Engagement to the Senior Advisor, Executive Office of the President
Mr. Strautmanis recognized the committee for their work and extended greetings from President Obama, First Lady Michelle Obama, and Senior Advisor Valerie Jarrett. He thanked the committee for bringing visibility to autism, which he personally valued as a parent of a 14-year-old adolescent with ASD. He recognized the dedication and sacrifices made by everyone dealing with the reality of autism and urged them to continue their efforts.
He stated that the Obama Administration supports the reauthorization of the Combating Autism Act and said that they would work with the community to support legislation that best addresses current needs and challenges. He stated that the President is a staunch advocate of all people with disabilities, including those with ASD, and that the Administration had expanded their investment in ASD research and services during a time of austerity. Mr. Strautmanis noted that the President had issued a proclamation celebrating World Autism Awareness Day in April and that the Department of Justice (DOJ) was working hard to protect the rights of people on the spectrum.1 Recently, the DOJ successfully prosecuted Nobel Learning Communities, Inc., for excluding children with disabilities from its network of private schools. He thanked the committee for their work on the Strategic Plan and commended their spirit of unity, stating that finding common ground was critical to making progress.
Dr. Insel noted that President Obama, in his address to the National Institutes of Health (NIH) in 2009, had identified cancer, heart disease, and autism as the three priority areas for biomedical research. He then introduced Dr. Anand Parekh, Deputy Assistant Secretary for Health at the Department of Health and Human Services (DHHS).
Anand Parekh, M.D., Deputy Assistant Secretary for Health, U.S. Department of Health and Human Services
Dr. Parekh thanked the committee and Mr. Strautmanis for their dedication and emphasized the amount of activity within the Department of Health and Human Services (DHHS) related to autism. The National Institutes of Health (NIH) supported $122 million in new autism research through the American Recovery and Reinvestment Act (ARRA), the Administration on Healthcare Research and Quality (AHRQ) is conducting comparative effectiveness research on medical and behavior interventions for people with ASD, and the Centers for Disease Control and Prevention (CDC), together with the Health Resources and Services Administration (HRSA), is continuing to promote their new behavioral pediatrics curriculum to improve early identification. The Centers for Medicare & Medicaid Services recently released its report on state services for people with ASD using data from nine states. He also noted that the Administration for Children and Families (ACF) and the Substance Abuse and Mental Health Services Administration (SAMHSA) were doing excellent work providing services for people with ASD across the lifespan.
He noted that the IACC provides essential leadership and coordination, particularly with its publications like the Summary of Advances that helps the public understand complex, cutting-edge research and the Strategic Plan for ASD Research that serves as a roadmap for funders.2, 3 Because of their excellent work, DHHS supports the reauthorization of the Combating Autism Act and the continuation of the Interagency Autism Coordinating Committee, he said.
He expressed Secretary Sebelius' appreciation for the recommendations on ASD-related wandering and noted that data was needed to understand how frequently the behavior occurred and who was most at- risk. He applauded the formation of the Subcommittee on Safety and said that the Department awaited their input on other important safety-related issues. Dr. Parekh also noted the need to rededicate efforts to address the challenges of ASD and educate health professionals to care for people with ASD. He highlighted the importance of the Affordable Care Act that now allows adolescents with ASD to remain on their parents' health insurance plans until they are 26 and ensures that they cannot be denied coverage because of their preexisting condition. He also emphasized the importance of understanding and treating medical comorbidities with ASD. He closed by thanking stakeholders for their efforts to improve the lives of their fellow Americans.
The committee members then introduced themselves to Mr. Strautmanis and Dr. Parekh. Dr. Insel said that it was reassuring to have the Administration supporting the committee's reauthorization. Without reauthorization, the IACC will sunset on September 30, 2011. The floor was then open for questions from the committee members.
Questions from the Committee
Ms. Denise Resnik noted that she was attending by phone because her organization, the Southwest Autism Research & Resource Center (SARRC), was hosting Dr. Stephen Hawking who was there to speak about his experience as a grandparent of a child with ASD. Dr. Geri Dawson thanked the Administration and DHHS for their support and said that the IACC had a tremendous amount of work to continue. She noted that despite progress, there was insufficient knowledge on effective interventions for ASD and that the community needed to continue to conduct research and develop services to address what amounted to a public health crisis.
Mr. Ari Ne'eman expressed his appreciation for Mr. Strautmanis' statements recognizing the contributions that people with ASD make to society and thanked the Administration for their support of other upcoming legislation including the Workforce Investment Act, the Elementary and Secondary Education Act, and the Developmental Disabilities Act. Mr. Ne'eman asked Dr. Parekh about the degree to which people with disabilities were included in the HHS National Health Disparities Plan.4 Dr. Parekh said that while the major focus of the plan was on health disparities affecting ethnic and racial minorities, it was also applicable to the disability community. Mr. Claypool said that the Office on Disabilities would be sure to include the disability community in the dialogue on national health disparities.
Mr. Grossman talked about how state budget cuts were negatively impacting services for people with ASD and asked how the IACC could best address the crisis in its role as an advisory committee. Mr. Strautmanis spoke about the importance of public-private partnerships and the committee's role in facilitating these relationships. He said that more partners would have to be brought to the table to meet the needs of people with disabilities during tight economic times. Ms. Redwood noted that many of the urgent issues for families with ASD were still not being addressed and said that, while the IACC was an admirable start, its members were unable to dedicate the amount of time necessary to truly tackle the issue. She requested that the Administration establish a task force similar to the White House task forces on H1N1 and obesity. She also noted that a promised Federal ASD Coordinator had never been appointed. Mr. Strautmanis said that he appreciated her sense of urgency and that the Administration valued input from the public during the process of reauthorizing the Combating Autism Act. Dr. Parekh said that the activities going on in HHS did not signal complacency and that they would redouble their efforts. He said the reauthorization of the Combating Autism Act provided an opportunity to evaluate what had been accomplished and refocus efforts for more progress in the future.
Dr. Insel reiterated that the urgency in the community was two-fold: a huge number of adolescents with ASD were becoming adults just as services were facing drastic reductions. While public-private partnerships would be an important tool, service delivery would fundamentally need to become more efficient to meet the exploding demand. He said that the word "crisis" did not overstate the current conditions and noted that the committee was grappling with how best to address this in its advisory role to Secretary Sebelius. Dr. Insel said he hoped that committee would be reauthorized so that it could continue its work and thanked the speakers for attending the meeting. Mr. Strautmanis said Secretary Sebelius should be recognized for her personal dedication to addressing ASD and stated his commitment to enacting real change for people in the community.
Thomas Insel, M.D., Director of the National Institute of Mental Health (NIMH) and IACC Chair
Dr. Insel then reviewed scientific advances that had occurred since January. He highlighted a report suggesting that researchers could diagnose ASD with extremely high specificity in children as young as 14 months of age by tracking eye gaze while the child viewed a series of geometric patterns and social stimuli.5 Young children with ASD demonstrated a clear preference for the geometric patterns. Researchers have also revised the autism diagnostic interview so that it can be used effectively for children between the ages of 2 and 4 years old.6 In advances related to understanding risk factors, scientists have identified severe vitamin D deficiency in pregnant Somali women living in Sweden.7 As in the U.S., Somali immigrants in Sweden appear to have higher rates of ASD and the research suggests that vitamin D deficiency may potentially play a role. Dr. Insel also spoke about a study exploring the use of induced pluripotent stem cells to investigate synapse formation and the errors that may contribute to ASD. 8
In treatment advances, three reports from the Administration on Healthcare Research and Quality (AHRQ) evaluated the effectiveness of early intensive interventions and medical treatments currently in use.9, 10 Using meta-analyses, researchers compiled and evaluated data from multiple studies conducted over the past decade. Dr. Insel said that the reports reveal that major questions remain about what interventions work and for whom. In services research, several papers have reported on an area of the Strategic Plan that was added in 2011: unmet dental needs for people with ASD and the use of behavior management to facilitate dental care.11, 12 A paper on service use among young adults with ASD reveals a huge drop-off after high school. By age 22, nearly 40 percent of people with ASD are no longer receiving services; African-Americans with ASD are three times less likely to be receiving services after finishing school.13 In research related to infrastructure needs, the Simons foundation has created a new database for animal research including a comprehensive mouse model.14 Dr. Insel also reported on work genotyping brain tissue samples from the Autism Tissue Program.15 He noted that researchers have only recently begun to sequence the DNA of the 100+ samples in the program.
Dr. Insel noted that because of the large number of new advances, this was an incomplete overview of recent findings. He also noted that the Allen Brain Institute has created the first online developmental brain atlas identifying genes expressed during fetal and early postnatal development. The open-access tool, supported by American Recovery and Reinvestment Act (ARRA) funds, will be an important resource for scientists studying gene expression in the developing brain, he said.
Update on New IACC Publications and the Combating Autism Act Report to Congress
Susan Daniels, Ph.D., Acting Director of the Office of Autism Research Coordination (OARC)
Dr. Susan Daniels then presented several new IACC publications and the Report to Congress on progress fulfilling the Combating Autism Act of 2006. The 2011 Strategic Plan for ASD Research, now available in a bound edition, had added 16 new research objectives for a total of 78 objectives.16 The 2011 Strategic Plan includes several new areas of focus including the development of alternative and augmentative communication (AAC) for nonverbal individuals, prevention of related health concerns such as obesity and mental health issues, and understanding safety issues that may increase risks of injury or premature death for people with ASD. The IACC has also released its 2010 Summary of Advances in ASD Research highlighting the top 21 articles published during the year (an additional companion article was included bringing the total to 21).17 In addition, the committee previewed a near-complete version of the 2009 Portfolio Analysis of ASD Research that provides a comprehensive assessment of autism research from major Federal and private stakeholders.18 Based on the analysis, ASD research received $314 million in funding in 2009, with the Federal government contributing about 76 percent of the total figure. ARRA stimulus funding accounted for 20 percent of the 2009 research total. Across the questions of the Strategic Plan, nearly one-third of funds went toward risk factor research: "What caused this to happen and can it be prevented?" The report also assessed how ARRA funding was distributed across the Plan and how much of the 2009 funding was going toward new investments. Finally, Dr. Daniels reviewed a document produced by the Office on Autism Research Coordination (OARC) for the Office of the Secretary of Health and Human Services describing Federal progress and expenditures made in ASD research and services since the enactment of the Combating Autism Act in 2006.19
The committee discussed producing a comprehensive collection of ASD research articles as they had during 2008 and members noted that the smaller list of articles nominated for the 2010 Summary of Advances provided a more focused picture of important publications. Ms. Redwood asked whether information about publications resulting from grants would be included in the next portfolio analysis and Dr. Daniels said that such information would be included in the future. Mr. Grossman recommended linking the IACC website to other important resources. Dr. Insel recommended revisiting the topic after the committee had heard the afternoon presentation on the AutismNOW portal. Dr. Geri Dawson recommended providing a concise statement on important themes and future investments for the next report to Congress.
The Combating Autism Act: HRSA's Investments
Laura Kavanagh, M.P.P. Director, Division of Research, Training, and Education at the Maternal and Child Health Bureau, Health Services and Resources Administration (HRSA)
The committee then heard a presentation on HRSA's investments in the Combating Autism Act from Ms. Laura Kavanaugh, Director of the agency's Division of Research, Training, and Education. To fulfill the intent of the CAA, HRSA invested funds in four major programs that address autism: autism intervention research (AIR), training through HRSA's Developmental Behavioral Pediatrics (DBP) program and the Leadership Education in Neurodevelopmental Disabilities (LEND) program, and state implementation grants. Currently, HRSA is funding projects in 13 states to examine how to bring about systems change.
Dr. Kavanaugh explained that HRSA funds two large research networks examining interventions for ASD, the AIR-P that focuses on physical and mental health, and the AIR-B, focused on behavior interventions. The networks include 27 research institutes focused on conducting studies, developing guidelines for interventions, validating tools, and disseminating information to health professionals and the public.
Researchers in the AIR-P network are studying key topics such as gastrointestinal (GI) issues, diet and nutrition, sleep disturbances, and medication choice. Key topics in the AIR-B network include social skills development, peer relationships and friendships, family well-being, and transitioning to adult life. The AIR-B network supports intervention studies that target low-income, underserved, non-English speaking, and rural populations. She said that HRSA plans to publish the guidelines developed through the AIR-B; currently they are under review by the agency's technical expert panel.
She then described HRSA's interdisciplinary clinical training program, designed to improve health care delivery systems from children with developmental disorders, increase cultural competency, and foster community-based partnerships. HRSA currently funds 39 LEND training programs across the country in an effort to promote early screening, evaluation, and intervention for children with ASD. They have increased the number of trainees focusing on evidence-based practices, the number of children screened as participating centers, and the number of continuing education events focused on ASD.
In order to help states act on their autism plans, HRSA supports implementation grants in 13 states. She then gave examples of programs currently going on in states: Illinois is focused on in-person care coordination activities and Missouri has implemented financial planning sessions for parents of children with ASD. Utah has a weekly family education series on ASD taught in both English and Spanish. The state of Washington is training parent-to-parent coordinators. Through these efforts, states are striving to change systems of care and improve access to services, she said.
Questions from the Committee
Mr. Ne'eman asked about HRSA's efforts to include self-advocates in their programs and Ms. Kavanaugh said that adults with ASD were involved in developing research questions in the AIR-P and AIR-B networks, as well as research and outreach. Dr. Coleen Boyle asked if HRSA was collecting data on the impact of increased screening on age of diagnosis. Dr. Kavanaugh said that the data was available and that she could send further information.
Dr. Insel asked for predictions on how HRSA programs would be affected by budget cuts in 2011 and 2012 and Dr. Kavanagh said that they planned to continue their activities if the CAA was reauthorized.
Update on the State of the States for People with ASD and Report on State Services to Individuals with Autism Spectrum Disorders in Nine States
Ms. Ellen Blackwell introduced a group of contractors working for the Centers for Medicare & Medicaid Services (CMS) who have been collecting data for the State of the States report detailing state ASD services across the U.S. and the Nine State Study on Services to Individuals with Autism Spectrum Disorders. These contractors then presented information on their respective projects.
Alyson Marano Ward, R.N., M.P.H., LM Policy Research, LLC
Ms. Alyson Ward of L&M Policy Research, LLC, said that they had been collecting data over the past year on existing programs and policies related to developmental disabilities services, early intervention, education, insurance, Medicaid, mental health, corrections, public health, and vocational rehabilitation. She noted that they had convened a Technical Advisory Panel in 2009 to help develop data collection instruments and had contacted autism organizations for guidance on the project. They then submitted the required Paperwork Reduction Act (PRA) package to the Office of Management and Budget (OMB) detailing their plans to speak with representatives from state agencies and offices. The public comment period on the package began March 25, 2011. Ms. Ward said that they expect to start interviews for the State of the States report in early July. The completed report is slated for January 2012.
Steve Eiken, Senior Research Leader at Thomson Reuters
Mr. Steve Eiken then reviewed the quantitative data that had been collected to date. He noted limitations of their information – some valuable government-funded supports and services could not be properly quantified and housing information was often hard to connect to a specific disability because of the Department of Housing and Urban Development (HUD) coding system. He then reviewed the national statistics that they had collected; special education (IDEA Part B) provided services to about 336,000 people with ASD as of October 2008. Medicaid served about 145,000 individuals in CY 2007 and Supplemental Security Income (SSI) served 136,000 people. Thirty-thousand individuals received Social Security Disability Insurance (SSDI) and 5,900 received vocational rehabilitation. Mr. Eiken reviewed some notable findings – several racial minority groups (Hispanics, African-Americans, American Indians, and Alaska Natives) were less likely to receive services for ASD and more than half of adults with ASD receiving Medicaid also received Medicare. Eighty-two percent of Medicaid participants with ASD received at least one prescription drug and 33 percent of participants received antipsychotic medication. Mr. Eiken noted that they did not collect information on the specific drugs being taking so he could not determine whether these drugs were FDA-approved to treat ASD or other drugs being used off-label.
He noted that there was tremendous variation in data across states. For each program, the percentage of beneficiaries varied at least five-fold and states with a high percentage of beneficiaries with ASD in one program were more likely to report high percentages in other programs. He noted that states with a low percentage of beneficiaries with ASD were more likely to report a high percentage with intellectual disability. This suggests that part of the variability may be due to the method of accounting for individuals with dual diagnoses of ASD and intellectual disability. He noted that the data in the report likely under-represented people with ASD because some people with ASD may be reported under co-occurring conditions and because states have flexibility in providing guidance for IDEA reporting. (Some states have a category for developmental disabilities while others do not.) The Medicaid data source also does not include all services lacking those rendered through managed care organizations and services that do not pass through the state's main Medicaid claims system.
The contractors, L&M and Thomson Reuters, had collaborated to develop several open-ended research questions. These included questions about the top public policy priorities for Federal and State agencies seeking to improve service delivery and recommendations about how to improve services for people with ASD receiving benefits for the first time (being mindful of declining state revenue). The contractors also suggested asking what data would be most useful in a State of the States report. Mr. Eikens said they would appreciate input from the committee as well on developing the report.
Danna Mauch, Abt Associates, Inc.
Dr. Donna Mauch then spoke about the nine state study on ASD services conducted by CMS.20 She noted that increased demand for services coupled with the economic downturn created the need for states to make the most of their limited resources. CMS responded by launching a study to provide guidance on adopting evidence-based and promising practices. In preparing the report, researchers conducted an environmental scan of the literature on ASD services,21 interviews with state directors and other key informants, and a review of recent literature and reports. Some of the key findings include that ASD services delivered by the states continue to be fragmented although they recognize the need to improve integration. Some of the hurdles to integrating programs include conflicting eligibility rules, policies, and jurisdictional responsibilities. States recognize this and Pennsylvania has gone so far as to create a Bureau of Autism Services, she noted. States also recognize that there are significant service gaps, particularly for youth transitioning to adulthood and people living in rural areas. The environmental scan revealed that 73 percent of services directed at transitioning youth had little to no evidence base. Due to the economic climate, states are also controlling costs by placing caps on the number of people that can be served by waivers and demonstration programs. Despite the state budget challenges, the study found that service innovation is on the rise. Dr. Mauch noted that professional staff shortages and lack of training were seen as greater impediments to the widespread adoption of evidence-based practices than budget issues. Also, interest in self-directed services has been growing.
The study investigated promising practices in nine states: Arizona, California, Connecticut, Indiana, Maine, Missouri, New Mexico, Pennsylvania, and Wisconsin. Dr. Mauch then spoke about specific programs such as Missouri's blue ribbon program to improve the age of ASD diagnosis and Indiana's First Steps Early Intervention Program to increase the number of children receiving early intervention services. The Southwest Autism Research & Resource Center (SARRC) in Arizona operates a full-inclusion preschool for typically developing children and those with ASD. Their evidence-informed program design includes 20 hours of intensive behavioral therapy in school and 8 hours of home-based training every week. Also included was the Therapeutic Pathways/Kendall Schools in California where board-certified clinical staff work with children on the spectrum, 1 to 8 years of age, focusing on improving adaptive, language, social, education, and self management skills. Wisconsin has implemented a Transition Action Guide (TAG) for Post-School Planning to help young adults with ASD navigate between school and employment. Connecticut has developed a pilot program that addresses the lack of services for young adults with ASD and the high rate of unemployment. They hope it will inform the design of future Medicaid waivers. Pennsylvania developed a Keystone Adult Community Autism Program (ACAP) to deliver a wide range of treatments, habilitation, rehabilitation, and support services to adults with ASD. Maine focused on training primary care physicians to provide autism screening and related services to compensate for the lack of developmental behavioral pediatricians in the rural state. Finally, New Mexico created a Center for Development and Disability (CDD) to make information and referral services available to the diverse population spread across the state. Dr. Mauch finished by emphasizing that while states are struggling financially, they are committed to innovation. She said that states are unified in their call for national standards, best practice guidelines, and technical assistance.
Questions from the Committee
Ms. Singer asked for a summary of the characteristics of a best practice center and Ms. Mach identified clear program objectives that are measured, carefully trained staff, and the use of evidence-based protocols and assessment instruments. Mr. Ne'eman asked Mr. Eiken what research indicated about service use and outcomes for adults with ASD who do not meet an institutional level of care and therefore do not qualify for Medicaid waivers. Mr. Eiken said that about one-third of adults with ASD received Medicaid long-term care and unfortunately, there was not much data on outcomes. Mr. Ne'eman asked if there was information about individuals with ASD using the Medicaid 1959 option for states to provide home and community-based services for individuals who do not meeting institutional level-of-care standards. Mr. Eiken expressed doubt that people with ASD were using the 1959 option because he said the benefits offered were more suitable to mental health care. He noted that studies showed that about ten percent of people using the personal care option in California and Minnesota have a developmental disability. Mr. Grossman said that he would like to see an integrated system of care across the lifespan and Ms. Ward said that their interview included questions about public policy priorities. Ms. Redwood asked whether the research data would be made public and said she was interested in the large number of drugs being used off-label for ASD. She also encouraged research into the differing prevalence rates among ethnic minorities, noting that it could yield clues to environmental exposures. Finally, she asked who would provide the national standards and guidance desired by the states. Mr. Eiken said that the Medicaid database is public, although researchers need a data use agreement with CMS to access it.22 Mr. Claypool cautioned that CMS data was sometimes problematic and that CMS was working to improve its data gathering. He also noted that many individuals receiving Social Security Disability Insurance were disabled adult children who qualified for benefits through their parents. Mr. Eiken noted that surprisingly about one-third of the 30,000 individuals with ASD in the study had a work history that qualified them for SSDI. Dr. Marjorie Solomon commented that the Services Subcommittee might generate a research question to identify evidence-based practices and asked whether the LEND program or other national programs could work to increase the services workforce. Ms. Blackwell thanked the contractors for their hard work and encouraged everyone to view the State of the States report.
Launch of the New AutismNOW Web Portal
Jamie Kendall, Deputy Commissioner of the Administration on Developmental Disabilities, Administration for Children and Families (ACF)
The committee then heard a presentation from Ms. Jamie Kendall, Deputy Commissioner of the Administration on Developmental Disabilities (ADD), Administration on Children and Families (ACF), who spoke about the launch of AutismNOW, the National Autism Resource and Information Center. The Center's mission is to offer a central interactive resource for people with ASD and their families for information on early detection and intervention, early education, transitioning from high school to early adulthood, community-based employment, advocacy for families and self-advocates, community inclusion, aging issues, implementation of healthcare reform, family and sibling support, and networking in the state, local, and national level. All the information available through the portal reflects evidence-based research and best practices.
She outlined the criteria for information included on the website: first, information must align with the Developmental Disabilities (DD) Act by reflecting the principles of inclusion, integration, independence, and self-determination. In addition, information must be welcoming, respectful, and unbiased. Staff at AutismNow will be the first to review submitted content, followed by the website's advocacy advisory committee. She welcomed people to email content recommendations to Center Director Tonia Ferguson.23 Ms. Kendall explained that AutismNow has a project steering committee that provides input on managing the project and convening regional summits, the first of which will take place May 14-15 in Washington, D.C. Other summits will take place June 25-26 in Indianapolis, Indiana; July 9-10 in Orlando, Florida; July 30-31 in Los Angeles, California; and August 13-14 in Austin, Texas. The events are intended to promote relationships between families, people with ASD, and key stakeholders in the regions. The website will also feature webinars on various topics such as the basics of autism, self-advocacy, and early detection and screening. She encouraged everyone to visit the AutismNOW and noted that the site will continue to grow substantially in the coming months. Ms. Solomon praised the comprehensiveness of the website and Ms. Blackwell encouraged members to attend the regional summit being held in the DC area.
Ms. Laura Reyes, a Montgomery County police officer, spoke to the committee about coordinating the Project Lifesaver program that places trackable bracelets on individuals at risk to themselves if they wander. Officers in the program develop a relationship with their client by meeting with him or her on a regular basis to foster trust and educate caregivers. She supported the use of tracking devices but noted that they are only one of a number of tools that can be used. Educating doctors, caregivers, first responders, and the general community on wandering is critical, she said, adding that medical coding should be coupled with education to heighten awareness and begin a larger conversation about wandering. While she understood the fear that a medical label could lead to mistreatment by caregivers, she noted that this was a possibility regardless of coding.
She said first responders must be trained to react quickly to a wandering incident, ask the most important questions, and quickly locate bodies of water and other potential hazards in the area. Parents must also learn to become advocates in an emergency wandering situation by providing officers with vital information. She said it would also be important to communicate that wandering is not a result of neglect or inattention and can happen to any parent of a child prone to wandering.
Next, Mr. Mark Blaxill spoke about his view that society was in the midst of a historic failure of the scientific process, noting that not a single case of autism had been prevented by the millions of dollars spent on ASD research. He urged the committee to refocus funds on research into environmental causes and defund work promoting social explanations for the rise in ASD and denying the existence of an autism epidemic. Mr. Blaxill asked the committee to seriously investigate concerns over vaccine injury and not reject them as fringe science.
Ms. Lori McIlwain addressed the committee about her concern over the opposition from some members of the IACC to a medical diagnostic code for wandering. She had spoken before the committee in October 2010 about safety risks for children with ASD who are prone to wander and in response the IACC had created a Subcommittee on Safety to address ASD-related wandering and other safety concerns, indicating support for efforts to prevent wandering-related injury. She noted that the heterogeneity of ASD may prevent those who are most profoundly affected from receiving necessary resources such as tracking technology because these resources are neither wanted nor needed by people with greater functional levels. She asked the committee to keep the most profoundly affected individuals in mind; they are often invisible because they cannot be physically present or speak for themselves, she said. She urged the committee to turn its attention to seclusion and restraint in schools by collecting data and training staff to use positive behavior supports. She asked the committee to support the Keeping All Students Safe Act, federal legislation that would regulate the use of seclusion and restraint in schools.
Finally, the committee heard from Ms. Lindsey Nebeker, a self-advocate on the autism spectrum. She spoke about the dangers of abuse in group homes for people with developmental disabilities, particularly those who are nonverbal. She referenced a recent New York Times article documenting cases of abuse of developmental disabled clients in residential facilities.24 Ms. Nebeker asked the committee to support research on preventing abuse and developing alternative and augmentative communication (AAC) techniques to allow non-verbal individuals to communicate if abuse occurs.
Launch of the New JobTIPS Website
Dorothy Strickland, Ph.D., President of Virtual Reality Aids, Inc., Do2Learn.com
Dr. Dorothy Strickland, President of Virtual Reality Aids, Inc., and do2Learn.com, presented the newly developed JobTIPS section of the Do2Learn website, which serves as an educational resource for people with special needs and their families. JobTIPS is a free program that helps people with disabilities such as ASD explore job interest, seek and find jobs, and develop the necessary skills to keep their jobs. The program is also designed for employers to access information on supporting an employee with ASD. JobTIPS will be composed of four parts: the core information for people with ASD looking to become employed or sharpen skills to retain employment, a tool box for support agencies, a virtual reality practice space for individuals to practice skills with a therapist, and finally, a study evaluating how well people learn and generalize skills taught from the site. The core material is already available to the public and the toolbox, practice space, and study will be available in the coming year.
Louise Southern, M.Ed., BCBA, Director, JobTIPS program and Oversees General Web Content, Do2Learn.com
Ms. Louise Southern, Director of the JobTIPS program, spoke more about the core program and the key strategies and principles underlying the material. The "determining interests" section has vocational assessments and informal evaluations of the user's social and communication skills to help determine what level of social demand would be most suitable. In the "what's your scene" section, jobs are conceptualized as "in-the-scene" which requires frequent and direct interaction with customers and coworkers, "behind-the-scene" where less social interaction is necessary, and "out-of-the-scene." The website also details environmental demands of specific jobs such as noise and lighting considerations, and offers coping skills to offset environmental demands.
The "finding a job" section explores the social nuances of the job hunt, including networking, job fairs, and door-to-door searches. It also provides tips on navigating online searches. This section includes more than 300 printable activities including scripts, cue cards, visual checklists, worksheets, and graphic organizers. Ms. Southern then introduced the "getting a job" section that helps users develop resumes and cover letters and complete job applications and pre-employment screens. Much of this section is devoted to interviews and also addresses the question of disclosing a disability to a potential employer. She explained that "why" boxes are embedded throughout the site to provide the rationale behind the targeted response. She noted that the site also included video modeling of the appropriate and inappropriate response and printable scripts for potential dialogues such as asking for an application, disclosing a disability, or making a social invitation to a co-worker.
In the "keeping a job section," users are presented with a range of information from grooming and appropriate attire to accepting feedback from supervisors and tolerating changes to routines and procedures. The section also offers time management and organizational strategies for employees with disabilities, as well as coping strategies for the social, environmental, and performance demands of a job. Ms. Southern noted that the site also dedicated a section to dealing with workplace bullying.
Questions from the Committee
Mr. Ne'eman thanked Ms. Southern for putting together such a comprehensive resource and said he had received positive feedback from self-advocates who had viewed the site. He expressed concern about one of the social assessments and Dr. Strickland said that they welcomed feedback from all users. Mr. Grossman asked about their efforts to publicize the site and was told that NIH had issued a press release and that awareness had also increased through word of mouth. Dr. Strickland said that the site was on the first page of Google hits for "job tips" and was currently averaging about 11 million visits a month. Dr. Insel noted that JobTIPS was supported by an ARRA grant and asked about financing the site once the stimulus grant ended. Dr. Strickland said that the site generated enough funds to maintain itself after the initial investment.
NIH Autism Centers of Excellence
Lisa Gilotty, Ph.D., Chief of the Research Program on Autism Spectrum Disorders, National Institute of Mental Health
Dr. Gilotty gave a quick overview of the Autism Centers of Excellence (ACE) program, established under the Combating Autism Act of 2006 to identify the causes of ASD and develop effective treatments. The ACE program consolidated two previous ASD research programs - the Collaborative Programs of Excellence in Autism (CPEA) and Studies to Advance Autism Research and Treatment (STAART). Currently, five NIH Institutes are involved in the ACE program:
- Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
- National Institute on Deafness and Other Communication Disorders (NIDCD)
- National Institute of Environmental Health Sciences (NIEHS)
- National Institute of Mental Health (NIMH)
- National Institute of Neurological Disorders and Stroke (NIMH)
The program has centers that are multidisciplinary collaborations on interdependent projects and networks, where multiple sites focus on a common research question. Researchers in the ACE program must share their data with the National Database on Autism Research (NDAR), collect common phenotypic measures, and meet annually. Presently, the program has six centers and five networks spread across the county. The NIH recently published a notice of intent to announce the upcoming request for applications (RFAs) for ACE centers and networks. Researchers applying to the program must show a focus on a gap area identified in the IACC Strategic Plan and ACE centers must include at least one project on interventions and/or services research.
Joseph Piven, M.D., Sarah Graham Kenan Professor of Psychiatry, Pediatrics, and Psychology, Director, Carolina Institute for Developmental Disabilities, Director, Neurodevelopmental Disorders Research Center, University of North Carolina at Chapel Hill
Ms. Gilotty then introduced Dr. Joe Piven, who heads an ACE network focused on early brain development in ASD centered at the University of North Carolina, Chapel Hill. Dr. Piven noted that the formal title for their work was the longitudinal MRI study of infants at risk for autism. Researchers image the brains of infants with older siblings on the spectrum at 6, 12, and 24 months of age. The rationale is that the onset of brain overgrowth in ASD seems to occur at around 12 months, around the same period that behaviors of ASD begin to appear. Dr. Piven said that research done through the network showed that brain volume enlargement remained fairly constant for children with ASD from age 2 to 4, suggesting that the overgrowth occurred before the age of 2. People with ASD have been shown to have larger head circumferences than the general population providing indirect evidence of brain overgrowth. A study of infants in the network showed that increased head circumference was noticeable around 12 months of age, adding to evidence of brain enlargement around 1 year of age. The network studies infant siblings because they are 10 to 20 percent more likely to develop ASD than the general population.
The focus of Dr. Piven's current study is to investigate the relationship between brain development and behavioral development during the critical period around one year of age, potentially aiding early diagnosis and intervention. The researchers are collecting data from 400 high-risk children with siblings on the spectrum, 100 children with ASD sent through referral, and 150 typically developing children. Brain imaging assessments will be completed at 6, 12, and 24 months of age. Dr. Piven said that they expect about 60 to 75 children in the study will develop ASD and a subset will develop autistic symptoms but will not meet the full criteria for diagnosis. Researchers will also perform brain scans on a group of children with Fragile X disorder, a form of autism with a known genetic cause, for comparison. Presently, they have enrolled and begun scans on 266 high-risk toddlers. The scans will reveal how white and gray matter, substructures like the amygdala, and neural circuits develop over time. Researchers hope the study will answer questions about genetic contributions to autism, the pathogenesis of the disorder, and underlying disease mechanisms. Dr. Piven emphasized the importance of longitudinal studies to understand the development of ASD. He expressed his thanks for all the families participating in the studies and to the financial support from NIH, Autism Speaks, the Simons Foundation, and the LENA Foundation.
Developing Effective Interventions for Infants and Toddlers with ASD
Sally Rogers, Ph.D., Professor, Department of Psychiatry and Behavioral Sciences, The M.I.N.D. Institute, University of California Davis Medical Center
Dr. Gilotty then introduced Dr. Sally Rogers, developmental psychologist and a Professor of Psychiatry at the M.I.N.D. Institute, University of California, Davis. In collaboration with Dr. Dawson and other colleagues, she developed the Early Start Denver Model (ESDM) and is the principal investigator for several autism research projects. The ESDM was created specifically for infants and toddlers and is based on the Denver Model developed in 1981. The EDSM is a relationship-based intervention developed on the idea that infants learn and develop through specific types of interactive, bidirectional relationships with significant people in their lives. The method has a specific curriculum that focuses on reducing the core aspects of ASD through natural play. In addition to her work on developing and testing the efficacy of interventions in infants and toddlers, Dr. Rogers' is also conducting research to identify autism in infancy.
Dr. Rogers spoke about three of her current studies: a multi-site, randomized controlled trial of the Early Start Denver Model (ESDM) for 12-month-olds with ASD, a treatment study for 6- and 12-month olds supported by ARRA funds, and research on the use of distance technology to provide interventions for families who are too far away to access interventions in-person.
Dr. Rogers explained that early intervention strategies for infants with ASD are based on a transactional model – the symptoms of ASD affect the child's social environment but the social environment can also impact the child's symptoms. By impacting the child's social environment, it is possible to change the very biology of autism including the child's brain development and resulting symptoms. The randomized controlled trial of the ESDM will compare the outcomes of children using the intervention to those receiving standard community treatments. Researchers will evaluate the effects on cognition, language, social development, and symptoms of ASD, as well as the family's response to participating in the intervention.
The study is being run at three sites with 100 children and involves a team of evaluators blind to the intervention and a team of data collectors who collaborate with a data coordinating center. The parents of the children selected for the ESDM receive three months of training, after which the children receive 24 months of intensive one-on-one therapy for 20 hours a week. Dr. Rogers discussed the demographics of the participants, noting that the children came from diverse ethnic backgrounds. She shared data showing that after a short training period, parents develop the same level of proficiency leading the intervention as a trained therapist.
Dr. Dawson carried out the initial ESDM clinical trial, which showed that children receiving the ESDM exhibited significant gains in IQ over the comparison standard community intervention group with similar number of therapy hours.25 Pre-treatment IQ was also found not to moderate the effect of language development and 90 percent of study participants receiving ESDM were using functional phrases and sentences by the time they completed the program at 4 years of age. While the severity of ASD symptoms did moderate overall IQ gain, all children responded to the ESDM regardless of initial severity.
In the current randomized controlled study, both children receiving ESDM and the standard community intervention showed significant gains in verbal IQ, significant reductions in repetitive behavior, and significant gains in imitation skills within the first 12 weeks. To date, no difference between the two treatment groups has been observed, but the ESDM group is receiving significantly fewer hours of treatment during the first months of the study while parents are being trained, averaging about one hour of intervention for the comparison group's four to five hours weekly.
Dr. Rogers then talked about her work with Dr. Laurie Vismara on providing internet-based early intervention. Parents showed equal proficiency learning ESDM therapeutic techniques in-person and online, reaching the level of a trained therapist after six to eight weeks. Children involved in the study show similar gains to those in the clinic, going from an average of three words spoken during their one-hour session to 30 words and from 40 words to 147 words used in the last week of the 15-week online intervention.
Dr. Rogers then discussed a pilot study supported by NICHD seeking to develop effective interventions for 6- to 12-month-olds who show behavioral symptoms of ASD. She showed two videos illustrating the dramatic gains in language and social development characteristic of the eight children who have gone through the center's ESDM-based program.
Questions from the Committee
Ms. Redwood asked whether they had restricted the families' use of complementary and alternative medicine (CAM) during the study and Ms. Rogers said that they had not limited CAM use but that the children were not undergoing any other traditional therapies. Dr. Rogers explained that the Early Start Denver Model emphasizes children initiating play, making choices, and being spontaneous communicators. Adults are not leading the session but instead reacting to the children's self-initiated actions. She said she was hopeful the results from the multi-site ACE study would validate the therapy by adding to evidence from the first randomized controlled trial. Manuals on the Early Start Denver Model are already available at no cost, she noted. Mr. Ne'eman asked what IQ test was used and was told that researchers had used the Mullen Scales of Early Learning. He noted that IQ tests that are more verbal in nature may not accurately assess IQ in children with ASD. Dr. Rogers told the committee that she was gathering data on the educational placement of the children in the study after they graduate from the ESDM program. Ms. Singer asked what interventions the children in the comparison group were receiving and Dr. Rogers said they were receiving treatments chosen by the parents that were available in the community. Dr. Boyle asked whether Dr. Piven's studies on brain growth and the onset of behavioral symptoms were generalizable to other children with ASD or only those in high-risk families. Dr. Piven said that the behavioral studies were focused only on children with siblings on the spectrum but that the studies of brain growth included children without a family history of ASD.
When asked about how the one-year-olds in her study were recruited, Dr. Rogers said that they were all community referrals and surprisingly, diagnosis at such a young age was remarkably reliable – 115 of the 117 children that were initially referred at 12 months maintained the diagnosis through the next year. Dr. Houle said she would like to talk to Dr. Rogers further about using technology to make intervention training available online.
Centers for Disease Control and Prevention (CDC) Activities Related to ASD
Coleen Boyle, Ph.D., Director of the National Center on Birth Defects and Developmental Disabilities (NCBDDD), Centers for Disease Control and Prevention (CDC)
Dr. Boyle gave an overview of CDC surveillance programs, research, and health communication/education activities related to ASD. CDC is in the process of developing a report on the 2008 data from the Autism and Developmental Disabilities Monitoring (ADDM) Network. The report is expected to be published later in 2011. She said that CDC is working to bolster the utility of ADDM data so that is can impact programs and policies. CDC's large epidemiologic study, the SEED (Study to Explore Early Development) explores potential risk factors for ASD. The study has enrolled about 650 children with ASD to date and they hope to double that number during the next study cycle. Dr. Boyle reported that CDC received ARRA funds to study gene by environment interactions using biosamples collected through SEED. CDC also supports the "Learn the Signs. Act Early." campaign to raise awareness about ASD and early detection. She said that the program has increasingly developed a state focus and has benefited from collaboration with the Heath Resources and Services Administration (HRSA).
CDC Autism Prevalence Workshop
Cathy Rice, Ph.D., Behavioral Scientist, National Center on Birth Defects and Developmental Disabilities (NCBDDD), Centers for Disease Control and Prevention (CDC)
Dr. Rice followed up with details about the CDC's February workshop on evaluating changes in ASD prevalence. The workshop brought together experts on epidemiologic prevalence and surveillance to discuss the recent increase in ASD prevalence detected by the ADDM Network. They addressed what is currently known about the reasons for the prevalence trend, what can be learned from prevalence studies/surveillance of other complex conditions, and what priorities should be set. Dr. Rice showed a graph with surveillance data from multiple studies illustrating the rapid increase in ASD prevalence over the last decade. She said that while social factors contributed to increased identification, they most likely did not explain the trend in its entirety. Prevalence and surveillance studies describe changes in groups over time but reveal little about the causes, she said. As a result, population-level epidemiologic work and basic science are necessary to evaluate the multiple, overlapping factors that may be involved in ASD risk.
The workshop was divided into four panels that addressed whether the causes for increased ASD prevalence could ever truly be answered and if so, whether the different contributors could be quantified. Some panelists felt that the questions around the existence of a "true" increase were misplaced – regardless of the causes, there are now more cases of ASD and as a result, more people in need of services. Most agreed that multiple identification and risk factors contribute to the rise in ASD prevalence. All agreed that ASD is an important public health issue and that prevalence data is important for informing service needs and supports. Key recommendations included the need for more information about the functional level and other characteristics of people with ASD and the need to better understand disparities in ASD identification. The workshop participants recommended expanding analyses to examine factors influencing differences across subgroups and locations, trends in ASD population by age of diagnosis and other characteristics, and trends in other conditions such as attention deficit hyperactivity disorder (ADHD), depression, and anxiety. Complex modeling and multi-factorial analyses should be used to examine risk factors. The group encouraged collaboration between families, self-advocates, researchers, and service providers and public-private partnerships to support data collection, analyses, and application. They recommended seeking input from other fields evaluating prevalence changes in complex conditions.
The next tier of priorities would be to provide funding for trend analyses from existing data sets, linking existing data identifying children with ASD to other related databases, and making use of data systems now under development such as electronic health records. Members of the group recommended including information on service use and needs and supporting diagnosis validation. Researchers should follow-up with existing surveillance cohorts in the ADDM Network and surveillance efforts should span multiple age groups including adults. Additional recommendations included expanding coverage of the prevalence project, supplementing reports with more qualitative information on functioning and other characteristics, and identifying ways to measure traits of ASD on a continuum in the general population. They also recommended conducting longitudinal studies following cohorts over time.
Dr. Rice reported that the CDC is continuing to build the ASD trend dataset and use different analytic techniques to examine the identification and risk factors that can be measured using the data. The report on the 2008 data will be shared with the IACC and she said she hoped it would inform future planning efforts. She talked about opportunities for collaboration to advance the Network's aims during a time when budgets were being reduced.
"Learn the Signs. Act Early." Campaign
Rebecca Wolf, M.A., Public Affairs Specialist, Centers for Disease Control and Prevention
Dr. Boyle then introduced Ms. Becky Wolf to talk about the "Learn the Signs. Act Early." campaign, designed to improve early identification and interventions for ASD and other developmental disorders. The program has three components: the health education campaign, the Act Early Initiative, and research studies and evaluation projects of the program. The health education plan provides parents, healthcare professionals, and childcare professionals free tools to track children's developmental milestones and emphasizes the importance of acting early if there is a concern. Ms. Wolf said that they had recently shifted their focus from a broad marketing campaign to specifically targeting underserved populations by working with other federal, state, and local programs that serve parents and young children. In the seven years since "Learn the Signs. Act Early" was launched, research has shown that pediatricians familiar with the program are more likely to have resources to educate parents about monitoring their child's development, are more aware of resources for referral and treatment, and are less likely to advocate a wait-and-see approach. The campaign has helped to shape views on child development, increasing awareness that how a child plays, learns, speaks, and acts is as important to assess as a child's height, weight, first words, and first steps. The campaign recently released new materials that are free, research-based, customizable, and available in both English and Spanish.
Ms. Wolf then spoke about their new strategic approach for identifying federal, state, and local partners to increase outreach. To date, they have collaborated with WIC (Women, Infants, and Children) clinics, Head Start/Early Head Start resource centers, National Just in Time Parenting program, and ACF Child Care Block Grant recipients. She then reviewed the Act Early Initiative to improve collaboration between the complex state and local systems for early childhood programs. In collaboration with HRSA and the Association of University Centers on Disabilities (AUCD), CDC convened Act Early Regional Summits with key state stakeholders. The summits acted as a catalyst for states to develop plans for improving early identification and support state-level priority efforts such as awareness, screening, and provider training. She noted some state activities stimulated by the summits: Delaware provides customized materials to all pregnant women through home visiting programs and to new mothers; Connecticut provides their customized materials to all child care centers in the state; and New York widely distributes materials to Early Childhood Coordinating Council, home visiting programs, Family Resource Centers, Family Childcare Association.
Ms. Wolf finished by describing their research efforts. The CDC is currently in the process of re-evaluating the needs of key campaign audiences such as low-literacy groups, families in the welfare system, and Hispanic families. They are also conducting research on how to improve collaboration across the complex state systems and funding evaluation projects to examine the best implementation strategies. Currently, four states are receiving funding through the Combating Autism Act Initiative program: Alaska, Missouri, Utah, and Washington.
Questions from the Committee
Dr. Lawler asked if the CDC had discussed federating the ADDM or SEED data with NDAR and Dr. Rice said that they were open to the idea and were working on a public use dataset that would make the process easier. Ms. Blackwell asked whether the "Learn the Signs. Act Early." program was collaborating with Medicaid State Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Coordinators and Ms. Wolf confirmed that a number of state teams had. Ms. Redwood asked if they could begin a mandatory reporting program on ASD similar to those for H1N1 and Dr. Rice said that while some states had started making ASD reporting mandatory, the system lacked enforcement and the data did not seem reliable. Ms. Redwood asked how the National Cancer Institute (NCI) collected prevalence data and Dr. Boyle said that NCI has set up the SEER (Surveillance Epidemiology and End Result) Network and the CDC runs a cancer registry as well. Dr. Insel asked if it would be possible to put an ongoing surveillance system in place to collect data annually and Dr. Rice said that it would be difficult to get an accurate assessment of ASD rates due to the variation in the age of diagnosis and the levels of reporting across the country. Dr. Insel asked if real-time monitoring could take place in one location and Dr. Rice said that they were conducting a project in Florida to evaluate how feasible real-time surveillance would be. She noted that measuring the rates of chronic illnesses was more difficult than tracking infectious diseases and while they were striving to improve the time between surveillance cycles, they had to be realistic about the limitations of their data collection systems.
Update on Autism Speaks Translational Medicine Workshop
Geraldine Dawson, Chief Science Officer, Autism Speaks and IACC Member
Dr. Dawson gave a brief overview of the meeting on accelerating development of novel diagnostics and drugs for ASD, cosponsored by Pfizer and Autism Speaks. She explained that the challenging pathway to drug discovery is a long one, beginning with the identification of a potential biologic target, assay development, and testing in an animal model. If researchers successfully proceed through the middle stages of development, the drug will move through the multiple phases of clinical trials that will hopefully culminate in FDA approval. The objective of the meeting was to identify ways to accelerate discovery and development by promoting collaboration between stakeholders and encourage pharmaceutical companies to enter the autism field. They also hoped to identify promising drug targets, strategies for their validation, and gaps and opportunities for future development research. During the meeting, experts from NIH, academic settings, and the pharmaceutical industry talked about the state of the science, lessons learned from single gene disorders associated with ASD, and promising target pathways. On the second day, they discussed related medical conditions such as gastrointestinal problems, immune abnormalities, metabolic abnormalities, seizures, and disruption in hormonal systems. They also addressed challenges and promising directions for target validation. Based on the discussions, the participants identified the need for better validated animal models of ASD, better high throughput screening platforms, and large clinical registries and tissue banks with detailed phenotypic data. There is also a need for clinical trial networks, biomarkers that are predictive of treatment response, sensitive clinical trial endpoints, and innovative clinical trial designs. Dr. Dawson said that while there was doubtlessly much work ahead, there was promise for developing medications to treat the core symptoms of ASD or associated medical conditions.
Susan Daniels, Ph.D., Acting Director, Office of Autism Research Coordination, National Institute of Mental Health
Dr. Daniels updated the committee on upcoming IACC activities. She announced that NIMH would host a special seminar on advances in treatment research with speakers Dr. Sue Swedo and Dr. Rebecca Landa that would be available on NIH videocast.26 The meeting minutes were approved by the committee and Dr. Daniels noted that the IACC had received a response to their letter on wandering from Secretary Sebelius.27 She then noted that the committee would have a booth with IACC materials at the International Meeting for Autism Research (IMFAR) in May and that the 2009 Portfolio Analysis would soon be available on the web. The Office on Autism Research Coordination (OARC) was proceeding with the data call for the 2010 Portfolio Analysis and the committee was asked whether they could recommend additional funders that should be contacted. The committee made recommendations for the Nancy Lurie Marks Foundation and the Hussman Foundation. Mid-year selections for the 2011 Summary of Advances would take place in July and preparations would be made for the 2012 IACC Strategic Plan, assuming that the committee was reauthorized. Dr. Daniels then noted several upcoming meetings - a joint meeting between the Services Subcommittee and the Subcommittee on Safety on the topic of seclusion and restraint would take place May 19th at the Bethesda North Marriott, a town hall was planned in conjunction with the annual Autism Society conference in July, and the next full IACC meeting was scheduled for July 19th.
Ms. Redwood asked if the town hall meeting could be held at another event such as the Autism One conference of the Autism Research Institute (ARI) conference to diversify the attendees. Ms. Blackwell noted that the Services Subcommittee had also discussed the possibility of an event in Washington, D.C. later in the year. Mr. Ne'eman said he supported the event being held at the Autism Society conference.
Services Subcommittee Update
Ellen Blackwell, M.S.W., Centers for Medicare & Medicaid Services and Co-Chair, IACC Services Subcommittee
Ms. Blackwell then reported that the Services Subcommittee had met on March 29th to discuss the national state budget crisis with presentations from Joy Johnson-Wilson of the National Conference on State Legislatures, Jeff Sell from the Autism Society, and herself. Ms. Blackwell then reviewed the basics of Medicaid, which serves as the pillar of services for most adults with ASD in the U.S. Medicaid is available for people who are poor, elderly, and/or have disabilities. Each state determines it own program and operates a state plan that describes the nature and scope of services. She encouraged everyone to visit www.cms.hhs.gov to review his or her state plan. Medicaid mandates some services and states choose additional option coverage, she explained. States also get to decide who is eligible for Medicaid, what services are covered, which providers can offer services, and what their reimbursement rates will be.
She explained that states share the cost of Medicaid with the federal government identified as Federal Medical Assistance Percentage (FMAP). FMAP in Maryland is about 50 percent; poorer states will receive a higher percentage, up to 71 percent in 2011. In special circumstances states can receive an enhanced FMAP up to 82 percent. Ms. Blackwell showed a list of the mandatory services under Medicaid, noting that nursing facility services are the only guaranteed institutional service. She then reviewed the optional Medicaid services which include all home and community-based services. She noted that the enhanced matching that was supplied by ARRA will end June 30th and that states must balance their budget annually. Because the Affordable Care Act includes maintenance-of-effort requirements, states cannot change their eligibility requirements. In order to reduce costs many states are eliminating optional services or reducing the duration or scope of services. States are also reducing provider reimbursements, imposing provider taxes, or moving to a payment system where rates are fixed per person (capitated payment). States are also looking to streamline services for those who are dually eligible for both Medicare and Medicaid.
The Affordable Care Act offers new or improved home and community-based services options and includes a new option for integrating and linking services. Ms. Blackwell drew the committee's attention to a letter sent by Secretary Sebelius to the state governors expressing her concerns about Medicaid and the State Children's Health Insurance Program (SCHIP). The Secretary offered immediate technical assistance to the states and highlighted a range of options to efficiently manage and enhance Medicaid programs. 28
Ms. Blackwell noted that it was unknown what would be included in the Essential Benefits Package that will be offered by state insurance exchanges starting in 2014. States are trying to comply with the Americans with Disabilities Act (ADA) and Olmstead Decision that requires that people with disabilities be included in the most integrated setting possible in the community. Ms. Johnson-Wilson stressed "picking your babies" or choosing the services that the advocacy community believes are most essential for people with ASD. The subcommittee discussed sending a letter to the Secretary regarding the budget crisis or as a follow-up letter to her message to the Governors. The letter could also be in support of ADA and Olmstead enforcement, said Ms. Blackwell, who asked whether the committee would be open to hearing a presentation from Tom Perez from the Department of Justice. The Services Subcommittee will meet with the Subcommittee on Safety to address seclusion and restraint and will hold a services workshop in the fall.
Mr. Grossman stressed the importance of advocating on behalf of the autism community by presenting strong recommendations to the Secretary. Mr. Ne'eman supported writing a letter to the Secretary outlining how HHS can coordinate with the Department of Justice to enforce ADA and the Olmstead decision. Ms. Singer said that she was left unsatisfied with the Secretary's response to the wandering letter and instead encouraged taking direct action as a committee. Mr. Ne'eman said he still saw value in communicating directly with the Secretary in their capacity as an advisory committee. Dr. Insel recommended that the Services Subcommittee draft potential recommendations for the committee to review as a whole.
Safety Subcommittee Update
Alison Singer, M.B.A., President, Autism Science Foundation and Co-Chair, IACC Safety Subcommittee
Ms. Singer gave an update on the Subcommittee on Safety's recent conference call. At that time the subcommittee had not heard a response from the Secretary on their wandering letter so it was not discussed. She said they would move forward to schedule a meeting with the Department of Justice on the topic of wandering. During the call they heard updates from Dr. Coleen Boyle on the ICD-9 meeting and the potential medical coding for ASD-related wandering. She reported that the IAN (Interactive Autism Network) survey on wandering had been launched and already 700 surveys had been completed. The subcommittee also discussed the issue of seclusion and restraint and Co-Chair Sharon Lewis suggested focusing on two areas where meaningful change could be made: developing regulations related to seclusion and restraint as part of the Children's Health Act of 2000 and collaborating with the Department of Education to focus on seclusion and restraint school settings. The Subcommittee on Safety and the Services Subcommittee would meet on March 19th to for an in-depth meeting on the topic.
Ms. Blackwell noted that CMS has developed an interim final regulation on seclusion and restraint that would be useful to review and Mr. Grossman noted that a piece of legislation, the Keeping All Children Safe Act, had recently been reintroduced to the House of Representatives.
Response to Public Comment
The committee then responded to the public comment heard earlier in the day. Ms. Redwood recommended developing educational material on wandering for parents as suggested by Officer Reyes. She also echoed Mr. Blaxill's criticism that funders were supporting redundant areas of study, citing the vast number of MRI studies. Dr. Insel noted that MRI was a tool and that it could be used in many ways, from identifying an early biomarker for diagnosis to understanding social information processing. Mr. Ne'eman noted that research on the needs of adults with ASD was receiving less than 1 percent of funding in 2009 and services research received only 3 percent. He also highlighted a comment from the President of the American Association on Intellectual and Developmental Disabilities that cited the risks of medicalizing a behavior that people may use as a form of communication. He said this underscored the potential danger of creating a medical code for wandering that might limit someone's ability to leave an abusive situation. Dr. Insel responded to the public comment criticizing the lack of research on environmental risk factors by noting that funders had contributed $31.5 million to the area in 2009. In response to an earlier comment, Ms. Blackwell noted that anyone with ASD had the ability to achieve his or her highest potential with the right services, supports, and assistance.
Closing Comments and Adjournment
Dr. Insel concluded by saying that the day's meeting had been eventful but that there was still much to be done. He thanked everyone in attendance and said he looked forward to seeing many individuals at IMFAR. The meeting was then adjourned.
These minutes of the IACC Full Committee were approved by the Committee on July 19, 2011.
I hereby certify that this meeting summary is accurate and complete.
Thomas Insel, M.D.
Chair, Interagency Autism Coordinating Committee
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