IACC Appendix ii: Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 and Combating Autism Reauthorization Act of 2011 (FY 2010 - FY 2012)  
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Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 and Combating Autism Reauthorization Act of 2011 (FY 2010 - FY 2012)

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Appendix ii. 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): Summary & Highlights 65

Cross-Agency Coordination

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.70 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.
  • 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.

Investigating the Causes of Autism

  • CDC's Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) network supports the Study to Explore Early Development (SEED) program, which is the largest study in the United States dedicated to identifying factors that put children at risk for autism (including genes, health conditions, and environmental exposures). SEED will include ~ 2,700 children, 2 through 5 years of age, as well as their parents, representing diverse groups from six areas across the country.
  • 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

Innovative Intervention Investments

High-Quality Training of ASD Practitioners and Service Providers

Best Practices in Service Provision

  • In 2007, CMS issued three "Promising Practices" papers on ASD to highlight innovative service provision systems and practices: California - Single Process for Early Diagnosis and Service Delivery, Connecticut - Pilot Program for Non-Medicaid Eligible Young Adults with ASD, and Delaware - Supported Employment Program for Adults with ASD.
  • 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 2010, CMS released the Autism Spectrum Disorders (ASD) Services Final Report on Environmental Scan, (PDF - 2 MB) providing a comprehensive review of scientific evidence regarding the efficacy, effectiveness, safety, and availability of ASD-related psychosocial services and supports for children, transitioning youth, and adults with ASD.75
  • 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.76

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 percent of all individuals served in the program.
  • Through funds provided by the Combating Autism Act Initiative (CAAI) under the CAA, HRSA established a State Public Health Coordinating Center for Autism to help states ensure that children and youth with ASD receive early and appropriate identification, diagnosis, and intervention services. In addition, nearly $2.7 million in grant funds was provided to nine states to assist them with improving services for these young people.
  • HRSA's Leadership Education in Neurodevelopmental Disabilities (LEND) training program has supported the development and dissemination of a widely used curriculum, called "My Future, My Plan: A Transition Planning Resource for Life After High School," This link exits the Interagency Autism Coordinating Committee Web site to assist students, parents, and professionals in planning for a successful transition to adulthood.
  • 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 in 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)77 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 Autism NOW National Autism Resource and Information Center, 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.

To access the complete report, please refer to 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).78

NIH publication No. 14-8012

Copyright Information
All material appearing in this report is in the public domain and may be reproduced or copied. A suggested citation follows.

Suggested Citation
U.S. Department of Health and Human Services, Office of Autism Research Coordination, National Institutes of Health (On behalf of the Office of the Secretary). Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 and Combating Autism Reauthorization Act of 2011 (FY 2010 – FY 2012). February 2014. Retrieved from the Department of Health and Human Services Interagency Autism Coordinating Committee website at: http://iacc.hhs.gov/reports/reports-to-congress/FY2010-2012/index.shtml 

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