Autism CARES Signed by President Obama

The Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2014 was signed into law on August 8, 2014 by President Obama. This bipartisan legislation, introduced by Senators Robert Menendez (D-NJ) and Mike Enzi (R-WY) and Representatives Chris Smith (R-NJ) and Mike Doyle (D-PA), reauthorizes the Combating Autism Act of 2011 for an additional five years and makes a number of improvements to it. Since its original enactment in 2006, the law has significantly advanced the science and practice in the disability field by increasing the number, scope, pace, and coordination of research, surveillance, public awareness, and professional training efforts. This has resulted in an increase in the proportion of infants screened for autism spectrum disorder (ASD), an increase in the proportion of children diagnosed by the age of three, and continuing improvements to decrease the time between diagnosis and intervention. The new law continues these efforts and makes the following improvements – a name change that uses more respectful language, a designated ASD position in the Department of Health and Human Services to oversee the law’s implementation, increased representation of self-advocates and family members on the Interagency Autism Coordinating Committee (IACC), and requiring a report on the needs of transitioning youth.For more information on the accomplishments of the prior legislation see, “Report to Congress on Activities Related to Autism Spectrum Disorders and Other Developmental Disabilities Under the Combating Autism Act of 2006 and Combating Autism Reauthorization Act of 2011 (FY 2010-FY 2012)”.

Autism CARES Is Law

The Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2014 was signed into law on August 8, 2014 by President Obama. This bipartisan legislation, introduced by Senators Robert Menendez (D-NJ) and Mike Enzi (R-WY) and Representatives Chris Smith (R-NJ) and Mike Doyle (D-PA), reauthorizes the Combating Autism Act of 2011 for an additional five years and makes a number of improvements to it. Since its original enactment in 2006, the law has significantly advanced the science and practice in the disability field by increasing the number, scope, pace, and coordination of research, surveillance, public awareness, and professional training efforts. This has resulted in an increase in the proportion of infants screened for autism spectrum disorder (ASD), an increase in the proportion of children diagnosed by the age of three, and continuing improvements to decrease the time between diagnosis and intervention. The new law includes continues these efforts and make the following improvements – a name change that uses more respectful language, a designated ASD position in the Department of Health and Human Services to oversee the law’s implementation, increased representation of self advocates and family members on the Interagency Autism Coordinating Committee (IACC), and requiring a report on the needs of transitioning youth.For more information on the accomplishments of the prior legislation see, “Report to Congress on Activities Related to Autism Spectrum Disorders and Other Developmental Disabilities Under the Combating Autism Act of 2006 and Combating Autism Reauthorization Act of 2011 (FY 2010-FY 2012)”.

Senate Passes Autism CARES Act

Late on July 31, the Senate unanimously passed “Autism Collaboration, Accountability, Research, Education, and Support Act of 2014” or the “Autism CARES Act” (S. 2449), sponsored by Senators Robert Menendez (D-NJ) and Mike Enzi (R-WY) and Representatives Chris Smith (R-NJ) and Mike Doyle (D-PA) . The bill reauthorizes the Combating Autism Reauthorization Act of 2011 for an additional five years. Since its original enactment in 2006, the law has advanced the science and practice in the autism field by increasing the number, scope, pace, and coordination of research, surveillance, public awareness, and professional training efforts.   The new measure will continue these efforts and includes a number of welcome changes: a name change that uses more respectful language, a designated ASD position in the Department of Health and Human Services to oversee the law’s implementation, increased representation of self-advocates and family members on the Interagency Autism Coordinating Committee (IACC), and requiring a report on the needs of transitioning youth. For more information on the accomplishments of the Combating Autism Act, visit the HHS website.

Legislation Introduced to Extend the Children’s Health Insurance Program

Congress is considering what actions to take regarding the Children’s Health Insurance Program (CHIP).  CHIP was enacted in 1997 and after FY 2015 there will be no new funds for the program.  CHIP has had bipartisan support and has helped expand affordable health insurance coverage to low and moderate income children.  Earlier this summer, Senator Rockefeller (D-WV) introduced S. 2461 to extend the program for four years.  Representatives Henry Waxman (D-CA) and Frank Pallone Jr. (D-NJ) introduced similar legislation in the House of Representatives.  Finance Committee Chairman Ron Wyden (D-OR) and Ranking Member Orrin Hatch (R-UT) joined Energy and Commerce Chairman Fred Upton (R-MI) and Ranking Member Henry Waxman (D-CA) in sending a letter to governors asking for input on extending the program and seeking additional information about enrollment and design of each state program. The Arc has supported the CHIP program and will be closely monitoring Congressional actions.

Centers for Medicare and Medicaid Services Clarifies Medicaid Coverage of Autism-Related Services

Last week, the Centers for Medicare and Medicaid Services (CMS) released an information bulletin outlining options for Medicaid to provide children with coverage of autism-related services. The bulletin discusses the opportunities and associated requirements for covering services under a variety of authorities including the Medicaid EPSDT mandate.  The bulletin does not require states to cover the services but clarifies how states can cover the services if they choose.  View the information bulletin.

The Department of Health and Human Services Announces Availability of Navigator Grants

The Department of Health and Human Services released a Notice of Funding Availability for grants for the navigator program authorized by the Affordable Care Act. The grants are available to organizations in states that the federal government is running or partnering with to maintain the private health insurance marketplaces. Navigators assist people with enrolling in health insurance programs. Organizations that are interested must submit a letter of intent by July 10. For pre-application webinars or more information, visit the Centers for Medicare and Medicaid Services website.

Senate Confirms New Health and Human Services Secretary

The Senate confirmed Sylvia Mathews Burwell as the new Secretary of the U.S. Department of Health and Human Services (HHS) last Thursday. The vote was 78 in favor and 17 voting against confirmation. Burwell is moving into the position from her post as the director of the Office of Management and Budget where she was easily confirmed in a 96-0 vote last April.

House Subcommittee Advances Combating Autism Reauthorization Act

On May 28, the Health Subcommittee of the House Energy & Commerce Committee approved an amendment in the nature of a substitute to H.R. 4631 that had been introduced by Representatives Chris Smith (R-NJ) and Michael Doyle (D-PA).   Changes in this latest version include adding a new autism position at the Department of Health and Human Services, increasing the number of non-federal members on the Interagency Autism Coordinating Committee (IACC), and studying the needs of children with autism as they transition to adulthood, as well as the services available to them. During the markup, Representative Pallone (D-NJ), Ranking Member of the Subcommittee, noted that two issues were outstanding for the full committee to address – determining which agency was responsible for conducting the transition study and renaming the law, which The Arc supports.   H.R. 4631 largely extends the research, surveillance, public awareness, and professional training activities under the Combating Autism Act for an additional 5 years. Senators Menendez (D-NJ) and Enzi (R-WY) are expected to introduce a Senate bill to reauthorize the law in the next couple of weeks.

House Subcommittee Hearing on Federal Response to Autism Spectrum Disorders

On May 20, the Government Operations Subcommittee of the House Oversight and Government Reform Committee, chaired by Rep. John Mica (R-FL), held a hearing entitled “Examining the Federal Response to Autism Spectrum Disorders.”  The hearing focused largely on the report of the Government Accountability Office (GAO) that found many of the research programs funded by the Combating Autism Act had the potential for duplication. Dr. Thomas Insel, Director of the National Institute of Mental Health and Chair of the Interagency Autism Coordinating Committee, strongly defended the research programs, arguing that no actual duplication was found and that duplication should be encouraged in scientific research to validate results.   Tor read the testimony and see the archived webcast at the Committee website.

House Subcommittee Markup Scheduled on the Combating Autism Act

On May 28, the Health Subcommittee of the House Energy & Commerce Committee is scheduled to markup H.R. 4631, the reauthorization of the Combating Autism Act. H.R. 4631 largely extends the research, surveillance, public awareness, and professional training activities under the Combating Autism Act for an additional 5 years. It would, however, reform the Interagency Autism Coordinating Committee (IACC) to promote greater coordination among federal agencies and require the Government Accountability Office (GAO) to review the existing landscape of services (federal, state, local government, and the private and non-profit sectors), conduct a survey of stakeholders, and make recommendations to enhance coordination, efficiency, and the value of the services currently provided to assist individuals with Autism Spectrum Disorder (ASD). Unfortunately, this bill does not include a name change. For more information on the House markup, see the Committee website.