The Autism CARES Act of 2019 was passed on September 30, 2019 as an expansion of the original Autism CARES Act of 2006. This new law extends services and funding for autism and autism research for the next five years.

The Autism CARES Act of 2019:

  • Increases funding for autism research.
  • Supports and reauthorizes programs that provide services for people with autism.
  • Empowers the Interagency Autism Coordinating Committee (IACC) on federal reporting and surveying current autism services.
  • Aims to improve services for the autistic community throughout a person’s entire lifespan.

The Autism CARES Act is the primary source of federal funding for autism services, research, and training. Here is a layman’s guide to how the law breaks down.

Background on the Autism CARES Act

The Autism CARES Act of 2019 (H.R. 1058) is a piece of bipartisan legislature that was signed into law by President Trump.

The original Autism CARES Act was passed in 2006 — then known as the Combatting Autism Act. It was reauthorized in 2011 and again in 2014 (when it got its current name). In 2019, it was reauthorized once again and signed into law at the end of September. It will be active for five years.

Autism is an incurable disorder that affects approximately 1 in 54 children in the U.S. This lifelong neurological disorder is notoriously underfunded and under-researched.

The Autism CARES Act expands funding for research as well as treatment services. The legislation also expands tracking of autism services and improves reporting to the federal government. The updated legislation raises the annual budget for autism-related efforts to $370 million.

Programs for autism have regularly been directed at youth. The Autism CARES Act aims to expand these services to support individuals in the autistic community well into adulthood. The goal is to offer assistance and treatment for autistic individuals throughout their entire lives.

How the Autism CARES Act Can Help Families Directly

With autism-related legislation leading up to and including the Autism CARES Act of 2014, more than $3.1 billion of federal funding was dedicated to autism. With the Autism CARES Act of 2019, an additional $1.8 billion in funding is allocated over a five-year period.

This funding is applied to help the autistic community in a variety of ways. The law:

  • Provides more funding for research. This eventually means more information on the potential causes of autism and effective treatment options.
  • Reauthorizes programs aimed at improving quality of life for people with autism.
  • Continues to support services and programs that help people with autism.
  • Expands additional services to include support for autistic adults since autism is a lifelong disorder.
  • Provides improved early detection training for medical providers, which can enhance early intervention services.
  • Expands autism services within diverse populations.

The law provides the autistic community with wider access to treatment and services. It also opens the door to future legislation that supports autism treatment, research, funding, and services.

Autism Research

One of the main things the Autism CARES Act of 2019 does is provide funding to the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and the Health and Resources Services Administration (HRSA) to support research through biomedical research grants for autism. This research drives treatment and intervention strategies to provide life-enhancing services for the autism community.

Changes were also made to the Interagency Autism Coordinating Community (IACC), a federal advisory committee that advises on issues related to autism. The law added representatives from the autism spectrum disorder (ASD) community to advocate for services and report to the federal government on ASD demographics.

This goal of this additional reporting is more accurate information. More detailed information on autism and the ASD community can lead to better services and treatment modalities, which improve quality of life for the entire community.

The IACC aims to find practical solutions to help people living with autism. The committee provides information in seven key research areas, which are:

  1. Screening, diagnosis, and early intervention.
  2. Risk factors and biological markers, including potential prenatal exposure.
  3. Biology and demographics of the autism spectrum disorder community.
  4. Lifespan concerns and a better understanding of the future for the autistic community transitioning into adolescence, adulthood, and beyond.
  5. Treatment and interventions that are beneficial for autism and families.
  6. Services, including where services are offered and how to access them.
  7. Reporting, surveillance, and infrastructure regarding autism support, services, treatment, and the community overall.

Expanded Services

The Autism CARES Act of 2019, like prior versions of the law, aims to increase treatment options and expand services within the autistic community. The goals are to:

  • Improve autism education.
  • Increase early detection services, resulting in earlier diagnoses.
  • Support medical professional training regarding autism.
  • Improve early intervention services, resulting in better long-term outcomes.
  • Broaden the scope of autism treatment and services to include all ages instead of being limited to only children.
  • Reduce disparities in health outcomes across diverse populations.
  • Increase funding in areas where there is a shortage of personal health services.

For the autistic community, this legislation means better treatment options and more available services.

The legislation focuses on evidence-based interventions as well as community-based services. These services include:

  • Behavioral support.
  • Recreation and social activities within the autistic community.
  • Nutritional support and services.
  • Safety measures.
  • Other services that support overall quality of life for individuals with autism.

The Necessity of Autism Legislation

Studies show that children with autism are nearly four times more likely to have unmet health care needs than neurotypical children. Without resources to meet those needs, these children suffer.

They experience poorer long-term outcomes than children who have access to autism-specific resources and therapies. And this means these children grow into adults with fewer skills to live in a world that is not designed with autistic individuals in mind. They may struggle with the transition to adulthood, resulting in fewer fulfilling social interactions, continued health care issues that are not addressed, and financial difficulties.

Legislation like the Autism CARES Act of 2019 is essential to helping these individuals. Thanks to ongoing federal funding, many of these children and adults can access services that are truly life-changing for them and their families.

The research funded by the legislation can pioneer discoveries, therapies, and resources that change the landscape of autism in the U.S. It’s repeatedly been shown that public policy like this can strengthen the ability of individuals with autism and other developmental disabilities to achieve the best possible outcomes in life.