Why we care about Autism CARESFebruary 8, 2019
The Autism Collaboration, Accountability, Research, Education and Support Act (Autism CARES) is the primary source of federal funding for autism research, services, training, and monitoring.
Because of the Autism CARES Act, over $3.1 billion has been dedicated for autism to the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and the Health Resources and Services Administration (HRSA). Autism CARES also authorizes the Leadership Education in Neurodevelopmental Disabilities programs which trains clinicians and service providers in critical skills needed to serve people with autism and their families.
On February 7, Congress introduced the Autism CARES Act of 2019 (S.427/H.R.1058). Without enactment by September 30, 2019, funding for critical research and training programs could expire!
We care about the Autism CARES Act of 2019 so that the following federal efforts and more can continue to advance research and services for people with autism across the spectrum and throughout the lifespan.
Through CDC prevalence studies, we know 1 in 59 children in the US is diagnosed with autism. Research at NIH and other agencies have also led to significant scientific developments such as setting a reliable diagnosis age, understanding the biological causes of autism, identifying co-morbidities, and developing possible medication targets.
The Interagency Autism Coordinating Committee (IACC)
Autism CARES established the IACC to coordinate all federal efforts on autism and advise the Secretary of Health and Human Services on issues related to autism. In its 2016-2017 Strategic Plan, the IACC recommended doubling the government and private autism research budget by 2020. Passing the Autism CARES Act of 2019 is a necessary step to ensuring we continue to move toward greater understanding of and services for autism.
Autism CARES directs federal agencies to study and report on critical needs in the community. The previous report studied the challenges young adults with autism face during their transition from school-based services to services available during adulthood. The Autism CARES Act of 2019 continues these efforts and directs the federal government to report on the health and well-being of individuals with autism throughout their lifespan. These reports pave a path to addressing gaps in federal research, programs, and services.
Autism Intervention Research Network on Physical Health (AIR-P)
AIR-P is a collaborative funded through the Autism CARES Act. It promotes a sustainable national system of community accessible programs that offer comprehensive and coordinated medical care for children and adolescents with autism. AIR-P's work is carried out by the 12 medical centers in the Autism Speaks Autism Treatment Network.
Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Training Program
The LEND Program trains future leaders to improve the health of children who have or are at risk of developing neurodevelopmental disabilities or other similar conditions such as autism. 52 LEND programs in 44 states help increase awareness of autism, reduce barriers to screening and diagnosis, promote the use of evidence-based interventions, and train professionals to use valid screening tools.