Autism: President Signs Autism CARES Act

On September 30, President Trump signed into law the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019 (H.R.1058). The Arc strongly supports this bill to reauthorize the Autism CARES Act, which funds critical autism research, surveillance, and education programs at the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), and Health Resources and Services Administration (HRSA). This reauthorization includes a greater focus on the needs of people with autism and other developmental disabilities across the lifespan. It also increases the minimum number of self-advocates on the Interagency Autism Coordinating Committee (IACC). The law was reauthorized for five years.

Autism: Senate Passes Autism Care Act

On September 19, the Senate passed the House version of the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019 (H.R.1058) by unanimous consent. The Arc strongly supports this bill to reauthorize the Autism CARES Act, which funds critical autism research, surveillance, and education programs at the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), and Health Resources and Services Administration (HRSA), respectively. This reauthorization includes a greater focus on the needs of people with autism and other developmental disabilities across the lifespan. Additionally, it increases the minimum number of self-advocates on the Interagency Autism Coordinating Committee (IACC). The bill now awaits President Trump’s signature.

Autism: Autism CARES Act Facing Expiration

The Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act is facing expiration on September 30. This law funds critical autism research, surveillance, and education programs at the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), and Health Resources and Services Administration (HRSA), respectively. The House passed the measure (H.R.1058, as amended) this summer, but the Senate has yet to take it up. The Arc strongly supports the Autism CARES Act and appreciates the increase in the required number of self-advocates on the Interagency Autism Coordinating Committee in the House reauthorization bull. If this law is not reauthorized, numerous activities within CDC and HRSA that help millions of people with autism and other developmental disabilities are at risk. Since the law provides a hard sunset for these provisions, it means that funding for these efforts after September 30 will treated as “new money,” making restoration of these funds extremely difficult to achieve. These provisions fund important research to help better understand and support those with autism and other developmental disabilities, critical surveillance and public education efforts, and interdisciplinary training of health professionals that help to screen, diagnose (or rule out), and treat children and adults.

Autism: House Approves Autism CARES Act Reauthorization

On July 24, the House of Representatives approved the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019 (H.R.1058, as amended). The Autism CARES Act funds autism research, surveillance, and education programs at the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), and Health Resources and Services Administration (HRSA), respectively. The Arc supports this legislation, which must next be approved by the Senate by September 30 in order to avoid expiration of the work done by the CDC and HRSA.

Autism/Family Support: House Committee Approves Autism CARES, Lifespan Respite, F2F Health Information Centers Reauthorizations

On July 17, the House Committee on Energy and Commerce approved the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019 (H.R 1058, as amended); the Lifespan Respite Care Reauthorization Act of 2019 (H.R.2035); and the Reauthorizing and Extending America’s Community Health Act (H.R. 2328, as amended), which includes extension of the Family to Family (F2F) Health Information Centers through 2023. The Autism CARES Act funds autism research, surveillance, and education programs at the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), and Health Resources and Services Administration (HRSA). The Lifespan Respite Care Program, through grants to states, helps build coordinated state lifespan respite systems, helps family caregivers pay for respite or find funding sources, encourages development of new and innovative community and faith based respite opportunities, and trains respite workers and volunteers. Family to Family (F2F) Health Information Centers provide critical support to families caring for children and youth with special health care needs (and assist providers, state and federal agencies, legislators, and other stakeholders to better understand and serve this constituency). These bills must next be approved by the full House of Representatives and then taken up by the Senate. Visit the Committee website for more information, including video of the markup. The Arc supports all three reauthorizations and is very pleased that the amendment to the Autism CARES Act requires three self-advocates (up from two) on the Interagency Autism Coordinating Committee.

Autism/Family Support: House Subcommittee Approves Autism CARES, Lifespan Respite Reauthorizations

On July 11, the Health Subcommittee of the House Committee on Energy and Commerce unanimously voted to approve the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019 (H.R.1058); and the Lifespan Respite Care Reauthorization Act of 2019 (H.R.2035). The Autism CARES Act funds autism research, surveillance, and education programs at the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), and Health Resources and Services Administration (HRSA). The Lifespan Respite Care Program, through grants to states, helps build coordinated state lifespan respite systems, helps family caregivers pay for respite or find funding sources, encourages development of new and innovative community and faith based respite opportunities, and trains respite workers and volunteers. These bills must next be approved by the full House Energy and Commerce Committee. Visit the Committee website for more information, including video of the markup.

Autism/Family Support: House Subcommittee Holds Hearing on Autism CARES, Lifespan Respite Reauthorizations

On June 25, the House Committee on Energy and Commerce Health Subcommittee held a hearing titled “Reauthorizing Vital Health Programs for American Families.” The hearing examined four bills reauthorizing health laws, including the Autism Collaboration, Accountability, Research, Education and Support (CARES) Act and the Lifespan Respite Care Act. Witnesses for these reauthorizations were Amy Hewitt, Director, Institute on Community Integration, University of Minnesota; and Jill Kagan, Director, ARCH National Respite Network and Resource Center. Visit the committee website to review testimony and archived video of the hearing.

Autism: CDC Releases New Autism Prevalence Data

On April 12, the Centers for Disease Control and Prevention (CDC) released its Morbidity and Mortality Weekly Report (MMWR) which included a study of data from 2010, 2012, and 2014 on the prevalence of autism among four-year-old children across study sites in seven states. The data indicate that the prevalence rate was 1 in 59. However, prevalence rates varied greatly between study sites. Of the three states that had data for all three years, only one (New Jersey) had an increase, while the rates in the other two (Missouri and Arizona) remained stable. These three sites also reported no improvement in age at first evaluation. These study sites were part of the Early Autism and Developmental Disabilities Monitoring (ADDM), a subset of the broader ADDM, which primarily monitors autism prevalence among eight-year-old children.

Autism: Autism CARES Act Reauthorization Introduced in Senate and House

On February 7, Senators Robert Menendez (D-NJ) and Mike Enzi (R-WY) and Representatives Chris Smith (R-NJ) and Mike Doyle (D-PA) introduced the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019 (S.427, H.R.1058). The Autism CARES Act funds autism research, surveillance, and education programs at the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), and Health Resources and Services Administration (HRSA).

Autism – Autism Prevalence Estimates Increase by Nearly 16%

Last week, the Centers for Disease Control and Prevention (CDC) released new data showing that the estimated prevalence of Autism Spectrum Disorder (ASD) continues to rise. The new rate of 1 in 59 is based on data collected in 2014 and reflects a nearly 16% increase from two years ago; CDC data from 2012 showed that an estimated 1 in 68 children had ASD. Peter Berns, CEO of The Arc, stated: “The new prevalence rates underscore the need to reauthorize the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act which expires next year. This law is the primary vehicle for federal funding for surveillance, autism research, screening and diagnostic services, and professional training.” Senator Robert Menendez (D-NJ), one of the lead sponsors of the Autism CARES Act issued this statement. Read The Arc’s statement on the new prevalence rates.