An Update on Federal Policies for Autism

November 14, 2019

An update from Floreo advisor, Dr. Gregory Downing:

On September 30, 2019, Congress passed, and the White House approved, federal legislation reauthorizing and updating federal coordinating activities for autism research and services in the form of the Autism Collaboration, Accountability, Research, Education and Support (CURES) Act of 2019.  This action is important as it raises funding targets and adds new responsibilities for government agencies. With wide bipartisan support of 173 Members of Congress, the legislation has now been enacted into law (P.L. 116-60) marking the second re-authorization of the CURES Act that was initiated in 2000 and now to be in effect through 2024.

At Floreo, we view the new CURES Act of 2019 as vital to supporting our nation’s research programs with new funding opportunities. This law authorizes the spending of $1.8 billion over the next five years for autism spectrum disorder (ASD) with increases in annual funding for the National Institutes of Health, Centers for Disease Control and Prevention, Health Resources and Services Administration. Our CEO, Vijay Ravindran, remarked that “this milestone underscores the importance of our community’s continued advocacy role as we strive to secure much needed federal support of future innovations that improve the lives of those affected by ASD.”

In addition to the funding dimensions, the CURES Act brings several new federal policy advances. The Federal Interagency Autism Coordinating Committee (IACC), a federal-wide administrative team that brings expertise across agencies together to optimize communication, research, education and services. Among additional changes to the authorities that Congress added was an expansion of the government’s mission to include the entire lifespan of people on the autism spectrum. To help address this new mandate, the IACC will now include members that represent the agencies of the Departments of Labor, Justice, Veterans Affairs, and Housing and Urban Development. The law also grants authority to the Secretary of the Department of Health and Human Services to prioritize research and services for rural and underserved geographic areas in need of assistance.

Signaling an interest of Congress to learn more about the needs of individuals, families, and caregivers, the legislation requires government agencies to create a comprehensive report within two years on the demographic factors associated with the health and well-being of individuals with ASD, recommendations on establishing best practices to ensure interdisciplinary coordination, improvements for health outcomes, community based behavioral support and interventions, nutrition and recreational and social activities, personal safety and more. In addition, the legislation calls for expanding IACC representation from the public members to enhance the voices of affected families in government policy and planning.

These steps by our legislators signals the progress achieved by the many supporters of those affected by autism.  Collectively, these federal policy steps provide promising new opportunities for our better understanding of health and health care needs, and interventions to help those in need.