From Combatting to Acceptance: The Autism CARES Act of 2019
February 2020

Paige Bussanich, M.S.
AMCHP Senior Program Manager, Children & Youth with Special Health Care Needs


What stemmed from a strong coalition of individuals on the autism spectrum, parents of young children with autism spectrum disorder (ASD), and other traditional advocates, now has a new name and focuses even more directly on the lifespan of individuals on the autism spectrum. The Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019 continues to be a crucial support to state Title V and the larger public health community’s ability to address ASD-related issues and needs following its enactment into law on September 30, 2019. The new law will enable the:

  • National Institutes of Health to continue to expand autism research and coordination of activities
  • Centers for Disease Control and Prevention to increase public awareness and surveillance of ASD-related issues
  • Health Resources and Services Administration to expand interdisciplinary workforce training to identify and support children and youth with ASD and their families.

For more information on changes made in the most recent law, refer to a helpful summary document produced by the Association of University Centers on Disability (AUCD).

Initiatives of interest to Title V programs
The Autism CARES Act has had significant, positive direct impacts on the lives of individuals with autism and their families. Several initiatives are funded by the Autism CARES Act that Title V programs may consider partnering with if they haven’t already done so. The following table identifies a few of these initiatives and provides specific examples of how they work with Title V programs to reach beneficiaries. For a full summary of the programs and activities funded through the Autism CARES Act, access this resource document from the Association of Maternal & Child Health Programs (AMCHP) and AUCD.

Program Description Example of alignment with Title V
Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Training Program LEND programs provide long-term, graduate-level interdisciplinary training as well as interdisciplinary services and care. The LEND training program is designed to improve the health of infants, children, and adolescents with disabilities. They accomplish this by preparing trainees from diverse professional disciplines to assume leadership roles in their respective fields and by ensuring high levels of interdisciplinary clinical competence. The Kansas Special Health Care Needs program partnered with faculty with the Kansas LEND program at the University of Kansas Medical Center to conduct the Northeast Kansas Tribal Developmental Disabilities Needs Assessment. The primary objectives were to assess the needs of young Native American children with intellectual and developmental disabilities in northeast Kansas; identify socio-cultural barriers that influence access to special care and developmental services; evaluate the cultural responsiveness of disability and developmental services; and foster partnerships between tribal communities, state, and academic agencies.
State Systems Program State implementation and planning grants aim to improve access to care through referrals, timely diagnosis and feedback, and entry into quality, coordinated care across systems for children with ASD/developmental disabilities (DD). Washington’s 2016-2019 Autism Spectrum Disorders and Other Developmental Disabilities Project (AS3D) project was led by the Washington State Department of Health in collaboration with different partners. This project addressed challenges related to funding and sustainability,  and established buy-in to strengthen policies at the state-level leadership and systems-level integration in order to identify children and youth with ASD/DD on a timely basis and help them access family-centered, comprehensive, coordinated, and culturally and linguistically competent services.
State Public Health Autism Resource Center (SPHARC) SPHARC is a comprehensive web-based resource center. The center provides ongoing technical assistance and facilitates cross-state learning. The objectives are to increase the capacity of states, particularly Title V programs, to develop and implement systems of care for children and youth with ASD/DD through resource development, technical assistance, and peer learning. SPHARC has developed learning modules on the six critical indicators for children and youth with special health care needs. The center provides targeted learning opportunities to state Title V programs and others working to improve the systems of care for children and youth with ASD/DD.

To orient CARES grantees, and to also educate public health professionals and leaders, state/local Title V staff, students, policymakers, and other stakeholders—as well as those working with individuals, families, and communities impacted by ASD/DD—an e-learning module on the Autism CARES Act was released in August 2019. Developed by AMCHP and AUCD, this module addresses topics such as the impetus behind the original legislation, how and why the legislation evolved to the current iteration of the Autism CARES Act, and possible areas of focus for future legislation. Stakeholders accessing the module will find an interactive learning environment with dozens of interviews from experts in the field, including individuals with autism and their families. Access the Autism CARES Act 101 module here.