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Minutes of the Interagency Autism Coordinating Committee (IACC) Services Subcommittee Meeting on June 13, 2008

The Interagency Autism Coordinating Committee (IACC) Services Subcommittee held a meeting on June 13th, 2008 from 9:00 a.m. to 4:00 p.m. EDT

Subcommittee Member Participants: Ellen W. Blackwell, M.S.W., Co-Chair, Centers for Medicare & Medicaid Services (CMS); Lee Grossman, Co-Chair, Autism Society of America (ASA); Gail R. Houle, Ph.D., U.S. Department of Education (DOE); Julia Whitney, (representing Edwin Trevathan) Centers for Disease Control and Prevention (CDC); Larke N. Huang, Ph.D., Substance Abuse and Mental Health Services (SAMHSA), Christine M. Mckee, J.D.; Bonnie Strickland, Ph.D. (representing Peter van Dyck), Health Resources and Services Administration (HRSA); Susan Hill, Disabled and Elderly Health Services; Cindy Lawler, Ph.D., National Institute on Environmental Health Services (NIEHS)

Other Participants: Della Hann, Ph.D., Designated Federal Official, Office of Autism Research Coordination (OARC), National Institute of Mental Health (NIMH); Azik Schwechter, Ph.D., OARC, NIMH

Welcome and Introductions

Co-chair Ellen Blackwell asked each participant to introduce themselves and briefly report on their agency’s service activities related to autism. Also, she informed the group about its purpose – to assess and improve services for individuals with ASD.

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Agency/Individual reports on services activity

Lee Grossman, co-chair for the committee, started with a brief description of ASA’s activities. ASA focuses on lifespan services. Lifespan services includes environmental health, education, human rights, international impact, treatments, and medical issues (comprehensive coverage, insurance, behavioral testing, and psychosocial wellbeing). ASA believes in developing public/private partnerships as the government should not be totally responsible for autism services. Corporations, including insurance companies are beginning to view ASD as a chronic medical condition. ASD is a part of the total disability community; a theme important for adults with ASD.

Bonnie Strickland, representing Peter Van Dyck from HRSA, spoke next. She reminded the subcommittee that the previous IACC developed a roadmap for services and that she participated in that activity. In creating that document, each agency took responsibility for at least one action point listed in the roadmap. HRSA took responsibility for systems guidelines from the perspective of the health community, to work with other components of the systems such as education etc. Within HRSA, ASD services are embedded within the broader provision of disability services. In developing disability services HRSA follows a six point plan:

  • Create partnerships with families
  • Provide comprehensive health care and related services access to Medical Home
  • Adequate financing
  • Early screening and intervention
  • Organization of community services for easy use by families
  • Transition to adult healthcare and independence

Through the Combating Autism Act (CAA), HRSA was recently appropriated $37 million for autism services. These funds are being used to extend and support the Leadership and Education Neuro-Disability (LEND) program for training practitioners, develop infrastructure for research networks and to support and coordinate services for ASD within the states through planning grants.

Ellen Blackwell asked about the inclusion of criminal justice and adult services. Bonnie Strickland responded that states could include these service systems, if they so chose, in the planning grant applications. Lee Grossman mentioned that states are struggling to focus their programs and should be looking for public/private partnerships. Bonnie Strickland agreed and indicated that making the connection to services is critical, not just focusing on training or research. HRSA will have press releases on its grant program that can be added to the IACC website.

Christine Mckee informed the subcommittee about her recent experiences with her 8 year old daughter at the Carbone clinic (http://www.drcarbone.net/) for speech. Insurance coverage is an important issue for parents who are looking for early intervention services for their ASD child. Ms. Mckee mentioned a Today Show episode from 6/13/08 (http://today.msnbc.msn.com/id/21134540/vp/25114556#25114556) broadcast on this topic. Some insurance companies are declining to cover some early intervention services (typically Applied Behavioral Analysis) to children with autism. There are a few corporations that mandate their insurers provide a wider array of services/treatment to people with autism. The cost of early intervention services is a big issue for parents.

Lee Grossman noted that ASA has a PowerPoint presentation that will be posted on its website this summer that analyzes the effectiveness of the interaction between the proliferation of legislation and the increased mandate for services. A state-by-state analysis will be completed by the end of the calendar year.

Ellen Blackwell informed the subcommittee that states, through home and community-based waiver programs, can allow some children with ASD to become eligible for Medicaid based on the child’s income. Many States have been challenged by CMS’ recent regulations on rehabilitative services and case management, which may impact people with ASD. One innovative proposal under development will address high-functioning individuals with ASD, who are having difficulties in community settings, especially in employment situations. In addition, Ellen informed the group that Towson University recently opened a center for Adults with ASD (www.towson.edu/chp/caasd)

Lee Grossman informed the subcommittee about the upcoming Network of Autism Training and Technical Assistance Programs (NATTAP) meeting. They generally work on education issues, and had over 1500 peer to peer professionals attending its last conference.

Ellen distributed a report issued by The National Association of State Directors of Developmental Disability Services (NASDDDS), Core report vl. 6 issue 2 may 2008, which discusses the National Core Indicators Project, and examined people with autism, in particular.

Julia Whitney, from CDC, stated that the CDC works on surveillance, and epidemiology and prevention of diseases. In terms of ASD, it is operating in all areas except prevention. The CDC is funding a 5 year, multi-site study that is researching the causes of ASD in children 2-5 years old.

Cindy Lawler, from NIEHS, said it is funding the Childhood Autism Risks from Genetics and the Environment (CHARGE) in order to identify ASD individuals by population studies. These studies also look at medical records and prospective diagnosis from subject blood draws. NIEHS is also funding a study that is investigating a cohort of pregnant women whom have a previous child with ASD and would like to have additional children. Bio specimens are being collected and environmental components being are examined.

Gaile Houle from DOE, Office of Special Education, informed the subcommittee that she was invited to speak to 20 state and federal liaisons at the headquarters of the Council of State Schools. She spoke about what is available to the states from DOE regarding technical assistance and education for ASD individuals, mostly under age 21. DOE has a major collaboration with Sam Odom from the University of North Carolina, the Wiseman Center in Wisconsin, and the Mind Institute in California to provide resources, professional development, and technical assistance that promote evidence-based practices for intervention and education, professional development, establishment of model sites, and outcome measurements. DOE is currently finished training the first three states that were selected for intensive professional development (New Mexico, Wisconsin, and Indiana). Three new states will be added each year. She distributed a handout about the program.

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IACC Research Initiatives Related to Services

The Services Subcommittee reviewed a list of the 41 research initiatives being considered by the IACC for inclusion in the Strategic Plan for ASD Research to identify those initiatives most related to services.

# Research Initiative Related or Not related
1 Efficiency Trials for Comprehensive Intervention Models for Individuals with ASD Across Ages Not services
2 Understanding Mechanisms of Neuroplasticity in Autism Possibly (CMS)
3 Developing Biomarkers for Autism Not services
4 Evaluating Diagnostic Criteria/Approaches Related to services
5 Informing the Genetics and Neurobiology of Autism Spectrum Disorders and Related Disorders Based on New Heritable Phenotypes Not services
6 Gene-based Phenotyping and Cognitive Neuroscience Not services
7 Enhance Tracking of ASD Prevalence in Children and Adolescents Related to services
8 Identification of Large-Scale Neural Systems Whose Function is Altered in Pre-Adolescent Autism Not services
9 Cost-Outcome Studies of Intervention Models for People with Autism Spectrum Disorder (ASD) Related to services
10 New Paradigm for Clinical Genetic Evaluation and Subsequent Diagnosis Not services
11 Merging and Analyzing Administrative Databases Relevant to Diagnosis, Course, Interventions, and Long-Term Outcomes Related to services
12 Identification of Biomarkers to Guide Treatment Selection and Evaluation of Treatment Outcome in Individuals with ASD Not services
13 A Large-Scale Resource of Genomic Data on Autism Spectrum Disorders Not services
14 Investigation of Efficacy and Safety of Commonly Used and Untested Treatments for Autism Spectrum Disorders Related to services
15 State of the States for Individuals with Autism Spectrum Disorder (ASD) Related to services
16 Multidisciplinary Longitudinal Study of Infants with Autism Before Age Three Not services
17 Gender Differences in the Biological Features of Autism Not services
18 The Development of Improved Categorical and Dimensional Measures of ASD, Associated Features, and the Broader Autism Phenotype, Relevant to Diagnosis, Severity, Outcome and Treatment and Pharmacologic Response Not services
19 Predictive Validity of Existing Screens in Community Settings: Assessing Effectiveness and Efficacy Related to services
20 Methods Development for Biologic Exposures / Biomarkers Not services
21 Analysis of Mechanisms Underlying the Interplay of Genetic and Environmental Factors Not services
22 Interventions for Older Children and Adults with ASD Related to services
23 Support Risk Factor Studies Focusing on Pre-Conception, Prenatal, Perinatal, and Early Postnatal Prediagnostic Exposures Not services
24 The Role of Co-morbidity in the Treatment of ASD Related to services
25 Identify Relevant Phenotypes That Relate to Etiology, Symptom Presentation, and Outcome Related to services
26 Animal Models and Cellular Systems for Developing Treatments for Autism Not services
27 Characterizing and Improving the Diagnostic Process in the Community Related to services
28 Develop Resources for Appropriate Control and Comparison Groups for Biological, Genetic and Other Studies of ASD, Including Specimens Most Relevant to Environmental Exposure and Perform Research Studies to Compare and Contrast These Groups. Not services
29 Identify and Evaluate Models of Effective Dissemination of Evidence-Based Practices (EBP) into Community Programs Related to services
30 Novel Treatments for Core Symptoms Related to services
31 Postmortem Brain and Tissue Acquisition Initiative Not services
32 Screening and Diagnostic Instruments in Minority or Disadvantaged or Underrepresented Populations Related to services
33 Collaborative Development of Streamlined Screening/Diagnosis Approaches to Support Large-Scale Genetic Population-based Studies Not services
34 Risk Factor Studies in Other Special Populations (other than high risk populations included in Initiative 1) with Unique Well-Characterized Features Not services
35 Improved Identification and Characterization of Autism in Adulthood Related to services
36 Evaluation of Community-Based Intervention Models Informed by Multi-Disciplinary Best Practices Related to services
37 Develop Resources to Coordinate Large Population-Based ASD Initiatives (NDAR (CDC, NIH), IAN, State Registries) Not services
38 Role of Immune and Infectious factors in the Pathogenesis of Autism - Human and Animal Studies Not services
39 Understanding Development Trajectories of Children and Families Affected by ASD Related to services
40 Fast Track Mechanisms to Facilitate Translational Treatment Research Not services
41 Intervention and Prevention Approaches for Infants and Toddlers at Risk for Autism Related to services
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Development of the subcommittee’s vision, mission statements/guiding principles; goals /action plans

The mission, read into the minutes, is from the IACC charge “To assess and improve services and supports for people with ASD”. The subcommittee discussed areas to include such as community inclusion; family and professional relationship; quality services and supports: integration and coordination of services and supports; comprehensive service and support; easy access; coordinated service systems; effective transition to adult services; adequate financing; consumer and family driven support service; experienced and supported providers; organized and easily accessible community based services; medically coordinated care; early identification and prompt follow-up; early and ongoing surveillance screening follow up and intervention; medical home; insurance coverage; screening; organization of services; families roles; and, transition to adulthood.

The Subcommittee tasked each member agency to submit its core principles that will then be cross walked and combined to use as guiding principles.

The Subcommittee defined the vision as “All people with ASD have the services and supports they need and desire throughout the lifespan to lead productive lives in the community and to reach their fullest potential”. The Subcommittee raised the question whether the Services Subcommittee’s Vision Statement should include a research focus.

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Services Subcommittee Request for Information

The Subcommittee defined the parameters for a new Request for Information (RFI). The following topic areas across the lifespan will be covered, but not limited to: education services, health and medical services, housing, transitions, employment, community inclusion, safety, older adults, finances, long-term guardianship and estate planning, etc.

The purpose of the RFI is to engage and hear from the public about needs and issues regarding services for people and families with ASD.

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Town Hall Meeting

The Subcommittee discussed convening a town hall meeting. The purpose would be the same as the RFI, to gather information from the public, and update the services roadmap. The members of the Subcommittee stressed the importance of linking the previous roadmap work to the current IACC and the planned RFI and town hall meetings.

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Service Roadmap Review

Ellen Blackwell noted that a future Subcommittee meeting should be devoted to discussing the roadmap. Members of the subcommittee should be prepared to report on what their respective agency is doing and progress of current activities that relate to the roadmap and its recommendations.

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Presentation(s) at future Services Subcommittee Meetings

The November IACC meeting scheduled to focus on ASD service issues. It will be an important opportunity to present what is needed in the services areas and what is currently available. The Services subcommittee should have a role in building the agenda for November IACC meeting.

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Future meetings schedule

Future meeting dates of the Subcommittee were discussed for August, September and October. Firm dates, locations, and times will be developed by the co-chairs and distributed to the subcommittee.

Meeting Adjourned

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Certification

We hereby certify that the foregoing meeting summary is accurate and complete

/Ellen Blackwell/
Ellen W. Blackwell, M.S.W.
Services Subcommittee Co-Chair
/Lee Grossman/
Lee Grossman
Services Subcommittee Co-Chair
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