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Summary and Highlights: Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 (FY 2006-FY 2009)

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Introduction

This document contains a summary and highlights from the Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 (FY 2006-FY 2009), which was prepared to meet the requirements of Public Law 109-416, (PDF – 49 KB), the Combating Autism Act of 2006 (CAA):

"Not later than 4 years after the date of enactment of the Combating Autism Act of 2006, the Secretary [of Health and Human Services], in coordination with the Secretary of Education, shall prepare and submit to the Health, Education, Labor, and Pensions Committee of the Senate and the Energy and Commerce Committee of the House of Representatives a progress report on activities related to autism spectrum disorder and other developmental disabilities."

The Report to Congress describes progress and expenditures made in autism spectrum disorder (ASD) research and services activities since the enactment of the CAA and addresses the following categories specified in the CAA: prevalence; average age at diagnosis; average age for intervention; average time between screening, diagnosis and prevention; effectiveness and outcomes of intervention; innovative intervention strategies; and adult services and supports.  Information from the following Federal departments, agencies, and offices that address ASD research or services is included:

In support of a coordinated Federal strategy for ASD research and services, the Combating Autism Act of 2006 reconstituted the Interagency Autism Coordinating Committee (IACC).  The IACC membership includes the above-listed HHS agencies (with the exception of AHRQ), the Department of Education and public members, including people with autism, parents of people with autism, leaders of national autism advocacy and research organizations, a researcher, and a physician.  The Report to Congress provides a summary of the IACC's efforts, including detailed descriptions of the activities of the committee that have fulfilled the committee's Congressionally-mandated responsibilities, such as the development of the IACC Strategic Plan for Autism Spectrum Disorder Research. The coordinated efforts of agencies serving on the IACC, in collaboration with public member partners, have served well in identifying promising ASD research areas as well as pinpointing both best-practices and gaps in ASD biomedical and services research, many of which are described in the Strategic Plan. Having the Strategic Plan in place in early 2009 allowed Federal agencies to jumpstart implementation of research priorities described in the Strategic Plan using funds from the American Recovery and Reinvestment Act (ARRA) of 2009. The Recovery Act supported $122 million in new autism research projects from 2009-2010.  Recent highlights  from Federal agency efforts in ASD research described in the Report to Congress include projects to monitor and track trends in ASD prevalence, develop new diagnostic tools, identify novel genetic and environmental risk factors, conduct trials of innovative medical, behavioral and educational treatments and interventions, and measure the efficacy and cost-effectiveness of evidence-based services for people with ASD. 

In addition, the report describes a wide array of autism services and supports provided by Federal agencies, including early screening, diagnosis and intervention services, provider training, healthcare delivery, social support and vocational training, while also highlighting Federal efforts to test and implement family-driven, person-centered and home and community-based service provision models.  Following the overview of ASD research and services-related efforts at each lead agency and related ASD budget figures, the report provides current ASD prevalence estimates, updates on the present diagnostic and intervention landscape, and ongoing efforts to develop effective new ASD supports and services programs and identify gaps in existing programs. This is followed by information on forward-looking strategies to address the continuing needs of diverse ASD communities.

The following is a list of programmatic highlights from the report, taken from all the contributing HHS agencies and offices and the Department of Education.  For more detailed information on these activities, as well as budget expenditures, please see the full-length report.

Agency Highlights from the Report

Cross-Agency Coordination

  • The Office of Autism Research Coordination (OARC) at NIH provides coordination for IACC member agencies, provides support for all IACC activities and publications, and serves as a liaison between the IACC and Federal agencies, Congress, and the public.
  • The IACC developed and has annually updated a Strategic Plan for ASD Research. The first IACC Strategic Plan was issued in 2009, the first update of the Strategic Plan was issued in 2010, and the second update of the Strategic Plan was released in 2011.
  • In 2008, the IACC published the ASD Research Portfolio Analysis Report, which is the first comprehensive analysis of both Federally and privately funded autism research projects and funding. The analysis tracks research progress made under the IACC Strategic Plan. The 2009 IACC ASD Research Portfolio Analysis Report is underway and will be released in 2011.
  • Each year, the IACC publishes the Summary of Advances in ASD Research, which is a lay-friendly summary of research articles identified by the committee as having made the greatest impact on the field of autism (the 2007, 2008, 2009 and 2010 editions are available on the IACC website).
  • The IACC/OARC strive for a high level of public engagement and transparency by actively disseminating all committee activities, decisions, and publications through the IACC website, webcasts, webinars, print materials, listservs, RSS feeds, and Twitter updates.  The IACC seeks input from the public on a frequent basis through open comment periods during every full committee meeting, formal Requests for Information (RFI), and town hall meetings.

Expansion of ASD Research

  • The National Institutes of Health (NIH) used American Recovery and Reinvestment Act (ARRA) funds to support nearly $64 million in new autism research projects in 2009, and committed another $58 million in ARRA funding to autism in 2010, bringing the total ARRA investment in autism research for both fiscal years to $122 million. New research supported including studies on development and testing of diagnostic screening tools for different populations; assessing risk from prenatal or early life exposures; initiating clinical trials to test early interventions; and adapting existing, effective pediatric treatments for older children, teens, and adults with ASD.

ASD Surveillance, Awareness, and Outreach

  • In 2009, CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network published the most recent autism prevalence data indicating that 1 in 110 children in the U.S. has an autism spectrum disorder.  Since 2006, the ADDM Network has been tracking and providing the most comprehensive estimates to date of the prevalence of ASD in multiple areas of the U.S. 
  • CDC's "Learn the Signs. Act Early." campaign has played an important role in raising awareness nationwide among parents, health care professionals, and early educators about the importance of monitoring a child's developmental milestones, identifying developmental delays, and providing appropriate early interventions. 
  • The Department of Education's 106 Parent Training and Information Centers This link exits the Interagency Autism Coordinating Committee Web site provide training and information to parents of infants, toddlers, children, and youth with disabilities and to professionals who work with them. This assistance helps parents to participate more effectively with professionals in meeting their children's educational needs.

Investigating the Causes of Autism

  • NIH's Autism Centers of Excellence (ACE) were expanded under the CAA and now comprise 11 research centers and networks at major research institutions and universities across the country that are actively working to identify the causes of ASD and develop new and improved treatments.
  • NIH launched the Early Autism Risk Longitudinal Investigation (EARLI) This link exits the Interagency Autism Coordinating Committee Web site study to follow and collect comprehensive data on ~1,200 families that already have a child with an ASD who are pregnant, or who might become pregnant in the future, to determine the role of environmental factors and genetic predisposition in the cause of ASD. 
  • CDC's Blood Spot Project is collecting, banking, and testing dried blood spots from newborn infants to determine whether the developing fetus has been exposed to harmful antibodies that may have had a role in causing ASD.
  • NIH is accelerating the pace of ASD research discoveries through large-scale, unprecedented resource and data-sharing initiatives, including National Database for Autism Research (NDAR) and the NIMH Genetics Repository This link exits the Interagency Autism Coordinating Committee Web site, which gather, standardize, and disseminate ASD research participant data and biological samples from thousands of human subjects participating in research projects.

Development of Evidence-Based Autism Treatments

  • AHRQ is currently supporting a Comparative Effectiveness Review (CER) to provide a comprehensive synthesis of evidence examining the benefits and harms associated with antipsychotic medications in the treatment of numerous disorders including ASD among children, youth, and young adults. This study will provide a basis for the development of clinical guidelines, as well as guidance for patients and their care providers, clinicians, researchers, policymakers, and federal agencies to support safe and appropriate use of these medications in pediatric and young adult populations.

Innovative Intervention Investments

High-Quality Training of ASD Practitioners and Service Providers

Best Practices in Service Provision

  • In 2009, AHRQ initiated support for an ongoing randomized trial of Child Health Improvement through Computer Automation (CHICA), a computer decision support program to aid implementation of clinical guidelines in pediatric practice.  The CHICA program is designed to streamline and improve the screening, diagnosis, and management of ASD symptoms by clinicians.
  • In 2011, CMS plans to release two studies that will highlight available services and best practices being implemented across the United States.  The Report on State Services to Individuals with Autism Spectrum Disorders (ASD) (PDF – 884 KB) is an assessment of the implementation of evidence-based/promising practices through the lens of state experience across nine states. The State of the States on ASD study will assess existing state programs and supports for families living with ASD in 50 states and the District of Columbia, providing a comprehensive view of services available through state programs across the country.

ASD Services and Supports Across the Lifespan

  • SAMHSA oversees the Congressionally-mandated Comprehensive Community Mental Health Services for Children and Their Families Program (the short title for this program is Child Mental Health Initiative (CMHI)) which provides funding for the development and evaluation of formal treatments and services, including natural and community supports that are wrapped around the child and family to promote full functioning in the community. Since 2002, the CMHI program has assisted 730 youths with ASD, representing 3.3% of all individuals served in the program.
  • The Department of Education's National Institute on Disability and Rehabilitation Research (NIDRR) is supporting a model project to examine the impact of community-based work experiences on the employment outcomes of youth with autism, as well as postsecondary school participation and ultimate employment of college students with autism.
  • The Department of Education's Rehabilitation Services Administration (RSA) oversees grant programs that provide supports such as counseling, medical and psychological services, job training, and other individualized services to individuals with physical or mental disabilities to help them to obtain employment and live more independently. For example, in 2009, state vocational rehabilitation agencies supported by RSA grant funds served 6,434 individuals with autism and 2,314 individuals with autism were assisted to achieve an employment outcome.
  • SAMHSA has developed a toolkit to implement the evidence-based program, "Supported Employment," which is a system of services and supports for people with disabilities to enable them to secure and maintain jobs in the community. "Supported Employment" builds on the concept of "jobs first" or "place and train" which is different from traditional vocational rehabilitation and sheltered workshop concepts. This program provides job coaches, development and retention; assistive technology; specialized job training and individually tailored supervision. It also includes both development of employment opportunities and ongoing support for individuals to sustain employment. "Supported Employment" has made it possible for individuals with moderate-to-severe levels of disabilities to become active, productive wage-earners in the mainstream workforce.
  • The Department of Education is supporting projects that are investigating how technology can be used to enhance an individual's access to services and participation in community settings.
  • The Office on Disability recently established the Center of Excellence for Research on Disability Services, Care Coordination, and Integration to create data infrastructure to support and conduct comparative effectiveness research on health services and supports for people with disabilities, including autism. The Center is part of a national strategy for quality improvement in health care and the expansion of health care delivery system research with a focus on person-centered outcomes research.
  • ACF's Administration on Developmental Disabilities (ADD) supports the State Councils on Developmental Disabilities (SCDD), which are independent state bodies composed of key stakeholders, including individuals with developmental disabilities, family members, and representatives of state and non-governmental services agencies, that work to identify needs and support state services and activities that increase the independence, productivity, inclusion, and community integration of people with developmental disabilities, including individuals with autism.
  • ACF's Administration on Developmental Disabilities (ADD) manages the Protection & Advocacy (P&A) Agencies program which supports agencies in each state to that protect the legal and human rights of people with autism and other developmental disabilities.  The P&As empower people by offering information and referral services for legal, administrative, and other remedies to resolve problems  and by investigating incidents of abuse and neglect and discrimination based on disability.
  • In 2011, ACF's Administration on Developmental Disabilities (ADD) will launch the AutismNOW National Autism Resource and Information Center This link exits the Interagency Autism Coordinating Committee Web site, providing access to high-quality resources and information on community-based services and interventions for people with ASD and their families, through a national dissemination network, regional events, training and technical assistance, and an innovative web presence.
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