UPDATE: On Wednesday July 24, 2019, H.R. 1058, which reauthorizes CARES for five years, passed the House of Representatives. Thank you for your advocacy in contacting your Representatives! Now we need to focus on the Senate. The Autism CARES Senate counterpart, S. 427, has not yet come up for a vote in the Senate. Please contact your Senators in your home states during the remainder of August recess and use this Alert to contact their DC offices to request their support for this bill. Time is running out - Autism CARES needs to be reauthorized by September 30!

Over 18% of people with Down Syndrome have a co-occurrence of autism, and all people with Down syndrome have developmental disabilities. NDSC, along with the broader autism and developmental disabilities community, is advocating for the reauthorization of the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act. This law, passed in 2006 and reauthorized in 2014, expanded and coordinated the federal government’s response to the increasing numbers of individuals diagnosed with Autism Spectrum Disorders (ASD) and other developmental disabilities. In passing this law, Congress also provided additional funding to existing developmental disabilities programs that were effectively working on research, education, and training in the area of autism. Unfortunately, this law will expire in September 2019 if it is not reauthorized.

Please contact your Senators and ask them to cosponsor and pass the Autism CARES Act (S. 427). 

For more information about this legislative effort, including fact sheets and issue briefs, please see these resources from The Autism Society of America. For information about the co-occurrence of Down syndrome and autism, view the recent webinar NDSC hosted in partnership with The Autism Society of America. You can also learn more by visiting the Down Syndrome-Autism Connection website.

BACKGROUND

The Autism CARES Act (originally passed in 2006 as the Combating Autism Act and then reauthorized in 2014 as Autism CARES) boosted funding for the following: 

Research being conducted within and administered by the National Institutes of Health (NIH) 

Surveillance and awareness activities at the Centers for Disease Control and Prevention (CDC), including Learn the Signs, Act Early for all DD  

Workforce development, research into evidence-based interventions, and efforts to establish more effective systems of care at the Health Resources and Services Administration (HRSA)  

Many of these programs existed for many years. For example, the national network of Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs was established over forty years ago to improve the health of infants, children, and adolescents who have or are at risk for, developing developmental disabilities, including Autism.  When the Combating Autism Act passed, the appropriations line item for this program was wrapped into the "Autism and other DD" line item, along with the other Autism CARES Act programs administered by the Health Resources Services Administration (HRSA). The network of developmental pediatricians is also in this category, as are a number of research projects that are developing evidence-based practices for individuals with autism and other developmental disabilities. 

The Autism CARES Act also authorizes the Interagency Autism Coordinating Committee (IACC), which coordinates all federal agency efforts and reports to Congress on activities and outcomes related to autism. Outcomes from the strategic plan of this committee will affect all developmental disabilities. 

Due to a sunset provision, the law will expire on September 30, 2019, if it is not reauthorized. Unlike other laws, the hard sunset provision will make all of these efforts disappear. It will be very hard for these agencies to find funding to continue these programs in the current environment.

Thank you for your advocacy efforts!  

The NDSC Policy & Advocacy Team

We encourage you to stay engaged in our advocacy efforts by: (1) Registering for NDSC Action Alerts- click "Quick Sign Up"; (2) Subscribing to the NDSC Policy & Advocacy Newsline; (3) Joining our national grassroots advocacy program, the National Down Syndrome Advocacy Coalition  and (4) "liking" NDSC Policy & Advocacy on social media .