WASHINGTON, DC (May 12, 2014) -- A proposed five-year extension of the Combating Autism Act has been introduced in Congress, calling for $260 million annually in new federal funding, a revamped Interagency Autism Coordinating Council (IACC), and an initiative to address the growing needs of adults with autism. The law will sunset September 30 unless extended by Congress and President Obama.
The bill, HR.4631, was introduced by Rep. Chris Smith (R-NJ) [left] and Rep. Mike Doyle (D-PA) [right], the cochairs of the Congressional Autism Caucus, with 36 other original sponsors. Since the original Combating Autism Act was signed in 2006, over $1.7 billion in federal funding has been dedicated to autism research by the National Institutes of Health (NIH), prevalence monitoring by the Centers for Disease Control and Prevention (CDC) and professional training.
"Autism Speaks commends Representatives Smith and Doyle for their bipartisan leadership in spearheading this more aggressive federal response to autism," said Autism Speaks President Liz Feld. "The prevalence of autism has soared 123 percent since the first Combating Autism Act was passed and the federal response has struggled to keep pace. Autism is the fastest growing neuro-developmental disorder in the country. The CAA provides a framework to meet the needs of the autism community."
The new reauthorization bill proposes:
- Dedicating another five years of federal funding for autism activities at an annual level of $260 million
- Designating an official in the U.S. Department of Health and Human Services (HHS) to implement the IACC's strategic plan
- Assigning the Democratic and Republican leaders in both the Senate and the House of Representatives one appointment each to the IACC
- Directing the General Accounting Office (GAO) to submit a report, with stakeholder input, on the demographics and transition needs of adults on the spectrum
“We need to work overtime to build on the successes CARA is producing for individuals with autism and their families,” said Smith. “This is a critical investment that is working to determine the cause of ASD, identify autistic children as early as possible to begin treatment, and producing better awareness, new therapies and effective services. The quality of life of many children is at stake, as it is with young adults who age out of the support services in educational systems.”
Doyle said the reauthorization would provide the federal resources to continue important research, while protecting against duplication of effort. "The latest autism numbers are simply astounding, and it is imperative that Congress come together to address this issue," he said
"Without reauthorization, funding for all federal autism programs will cease on September 30, 2014," Doyle added. "This common sense legislation simply must pass with bipartisan support.”
The new funding would include on an annual basis $190 million for the NIH to advance new research, $22 million for the CDC to continue monitoring autism prevalence, and $48 million for the Health Resources and Services Administration (HRSA) to train the nation's medical professionals how to detect and address autism. The proposed funding is based on the current appropriations levels approved by Congress.
The GAO would be directed to report back to Congress within 18 months on the needs of adults with autism, focusing on community integration, housing and residential supports, employment, transportation, vocational training, continued education, health care, speech therapy, public safety, and day activities. The GAO would be directed to survey various stakeholders in assembling the report.
The new bill would also reform the IACC by giving Congressional leaders a role in making appointments, and stepping up the HHS role in implementing the committee's strategic plan. The IACC was created to coordinate the response of the numerous federal agencies which address autism.
Reporting to Congress on the advances resulting from the CAA, the IACC said "significant strides" have been made in addressing many of the pressing needs of individuals and families affected by autism spectrum disorder. In particular:
- The CDC has continually updated its estimates on the prevalence of autism in U.S. children, now 1 in 68, while finding evidence that more children are being diagnosed by age 3, potentially gaining opportunities for early intervention
- New and improved instruments by NIH for identifying children with ASD at increasingly young ages and a strengthened evidence base for early behavioral treatments has yielded new opportunities to improve skills and reduce disability, both before school age and once a child enters the education system
- NIH-supported studies have uncovered distinct differences in the brain development of infants later diagnosed with ASD, while other research has identified potential environmental risk factors, such as nutrients, air pollutants, pesticides, and paternal age
- Research into conditions that co-occur with ASD, such as gastrointestinal disorders, sleep disruptions, and epilepsy, are contributing to interventions strategies
- Through comparative analyses of the effectiveness of therapies and interventions for children and adolescents with ASD, the evidence base has expanded for therapies such as computer-assisted care and mental health therapeutics
- Federal agencies are identifying and evaluating best practices among services and supports across the states
- Practitioner training has been improved while efforts have stepped up to reach affected individuals in more isolated parts through toolkits, websites, and telehealth delivery systems
- The Autism NOW website, supported by the Administration for Community Living, offers videos and toolkits on a range of issues spanning from early interventions to relationship building, employment, and family supports and training