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.

Autism – Wandering Bill Passed by the Senate

Kevin and Avonte’s Law passed the full Senate on December 21, 2017 with amendments by voice vote. The Arc supports this bipartisan legislation that assists in locating persons who wander from safe environments and expands the program to include new support for children with developmental disabilities, including autism spectrum disorder. It also allows Justice Department grants to be used to develop training and emergency protocols, supply first responders with additional information and resources, and make local tracking technology programs available for individuals who may wander because of their condition. Kevin and Avonte’s Law has now passed the Senate as a standalone bill (S. 2070) and it also has passed the Senate as the Grassley-Klobuchar-Tillis-Schumer amendment to the House-passed Federal Register Printing Savings Act (H.R. 195). The next step is for the House to pass it again with the Senate amendment consisting of Kevin and Avonte’s Law before it can go to the President for his signature.

Autism – Senate Judiciary Committee Approves Wandering Bill

Kevin and Avonte’s Law of 2017 (S. 2070), sponsored by Senators Chuck Grassley (R-IA), Amy Klobuchar, (D-MN), Thom Tillis (R-NC), Charles Schumer (D-NY), and Dick Durbin (D-IL), was marked up by the Senate Judiciary Committee and passed by unanimous voice vote on November 16. Senator Grassley’s amendment to pay for the bill by moving to a digital format instead of print for the Federal Register publication was approved. This bipartisan legislation reauthorizes an existing program that assists in locating persons with dementia who wander from safe environments and expands the program to include new support for children with developmental disabilities, including autism spectrum disorder. It also allows Justice Department grants to be used to: develop training and emergency protocols, supply first responders with additional information and resources, and make local tracking technology programs available for individuals who may wander because of their condition. Click here for a statement from Senator Grassley on the markup.

Autism – Wandering Bill Reintroduced

Representatives Chris Smith (R-NJ), Maxine Waters (D-CA), and Mike Doyle (D-PA) reintroduced Kevin and Avonte’s Law (H.R. 4221) on November 2. This bipartisan legislation reauthorizes an existing federal program that assists in locating persons with dementia who wander from safe environments and expands the program to include new support for children with developmental disabilities, including autism spectrum disorder (ASD). It allows Justice Department grants to be used to develop training and emergency protocols, supply first responders with additional information and resources, and make local tracking technology programs available for individuals who may wander because of their condition. According to recent data, 27% of children¬†with ASD, intellectual disability, and/or developmental delay are reported to wander from safe settings each year. In 2016, the House and the Senate both approved Kevin and Avonte’s Law. However, last minute changes attempting to address concerns over privacy and cost offsets required the legislation to return to the Senate. The Congress ended before another vote was held. The Arc supports this legislation and appreciates that the problematic provisions are not included in the new bill.