Interagency Committee Releases First Federal Strategic Plan for Autism Research
By Dr. Susan Daniels
Deputy Director, Office of Autism Research Coordination, National Institutes of Health, U.S. Department of Health and Human Services
In March 2009, the Interagency Autism Coordinating Committee (IACC) released the first federal strategic plan for autism research. The document, called the IACC Strategic Plan for Autism Spectrum Disorders (ASD) Research, advises the federal government on needs and priorities for autism biomedical and services research. The IACC strategic plan is organized around six critically important questions for people with ASD and their families regarding diagnosis, the biology of autism, risk factors, treatments and interventions, services and supports and issues faced by adolescents, adults and older adults with autism. Each question is followed by a brief discussion of what is currently known and what more is needed through research. The plan lays out a broad set of research objectives, including several objectives that address biomedical aspects of ASD, as well as objectives that address services research issues such as assessment of state-based services and supports programs and efficacy and cost-effectiveness of evidence-based services for people with ASD of all ages. It is anticipated that findings relevant to biomedical research portions of the plan, in addition to impacting medical options, will also translate to refinements and improvements in services for people with ASD.
The IACC was first established by Congress under the Children’s Health Act of 2000. The Services Subcommittee of the first IACC developed a Roadmap for ASD Services Research in 2005, which addressed a broad array of services issues, including screening, access to mental health, educational and social services, transition from child to adult services and financing of care. The IACC was reauthorized and reconstituted under the Combating Autism Act (CAA) of 2006. The CAA requires that two-thirds of the committee be composed of representatives of federal agencies, while one-third must be composed of public members. Currently, IACC membership includes a person with ASD, several parents of children with ASD (two of whom are also leaders of national ASD advocacy groups - Autism Society of America and SafeMinds), and officials from the following federal agencies that address ASD research or services: Centers for Disease Control and Prevention (CDC), Department of Education, Centers for Medicare and Medicaid Services (CMS), HHS Office on Disability, Substance Abuse and Mental Health Services Administration (SAMHSA), Administration for Children and Families (ACF), Health Resources and Service Administration (HRSA), and five Institutes of the National Institutes of Health (NIH). Under the CAA, the IACC is responsible for developing a strategic plan for ASD research, monitoring ASD research and annually updating the strategic plan. According to the requirements of the Federal Advisory Committee Act, all meetings of the IACC are public and all decisions made by the committee are advisory to the federal government.
Like the first IACC, the current IACC has a Services Subcommittee that is specifically focused on ASD services and supports. In August 2008, the Services Subcommittee issued a Request for Information (RFI) to obtain public input on areas of greatest interest and concern with regard to ASD services and supports. The subcommittee plans to use the information gained through the RFI to guide future discussions about how the IACC may best advise the federal government to address current public needs in the area of services and supports for people with ASD across the lifespan.
In a fortuitous convergence of events, the IACC strategic plan was completed just prior to the passage of the American Reinvestment and Recovery Act of 2009 (Recovery Act), which provided increased funding to several federal agencies that support ASD research. In March 2009, the NIH released several new initiatives that will use Recovery Act funds to jumpstart implementation of the IACC strategic plan, including initiatives on access to and effectiveness of services for people with ASD and their families. In fiscal year 2008, the NIH autism research program had a budget of $118 million. In 2009 and 2010, more than $60 million in additional funding will be added as a result of the Recovery Act. Other federal agencies may also use Recovery Act funds to bolster autism-related biomedical research and support enhancements in services research and programs for people with ASD. With the new framework provided by the IACC strategic plan to guide ASD research and the infusion of new funds to support the growth of ASD research to address critical biomedical and services needs, the federal government is well-poised to enhance and accelerate ASD research that will benefit people with ASD across the lifespan and the communities that support them.
For more information about the IACC and its activities, please visit here.