H.R. 6, the 21st Century Cures Act, which received broad bipartisan approval in the U.S. House would establish an $8.75 billion fund for the NIH to support biomedical research to accelerate the discovery, development and delivery of new treatments for all, including those with autism. It would direct the NIH Director to require those whose research is fully funded by NIH to share their data and would help organize collaborative research through a clinical trial data system. It would also require the Food and Drug Administration (FDA) to incorporate patient experience into regulatory decision-making. The legislation also requires the FDA to advance the development of personalized medicine, which holds promise for individuals diagnosed with autism. Final medical innovation legislation passed by the House and Senate should reduce risk and create incentives for the development of treatment into complex Central Nervous System (CNS) disorders like autism. It should further support the science around patient reported outcomes and advance the regulatory environment that converts research into treatments for people with autism and other medical needs. The U.S. Senate is considering companion legislation which has already received approval from the Senate Health, Education, Labor and Pensions Committee (HELP).
S.2614/H.R. 4919, also known as Kevin and Avonte’s Law, would reauthorize the expired Missing Alzheimer’s Disease Patient Alert Program and include new provisions to support people with autism. The legislation has already been passed in the U.S. Senate and is now being considered by the U.S. House of Representatives. This legislation would help families locate missing loved ones who have autism or other conditions that may cause them to wander. The bill would allow Justice Department grants to be used by law enforcement agencies and nonprofits for education and training programs to prevent wandering. The grants would facilitate training and emergency protocols for school personnel, supply first responders with additional information and resources, and make local tracking technology programs available for individuals who may wander from safety. Kevin and Avonte’s Law is named in honor of two boys with autism who perished after wandering. Nine-year-old Kevin Curtis Wills jumped into Iowa’s Raccoon River near a park and drowned in 2008. Fourteen year-old Avonte Oquendo left his school and drowned in New York City’s East River in 2014.
S. 1719 and H.R. 3099, also known as the Recognize, Assist, Include, Support, and Engage Family Caregivers Act, would direct the US Secretary of Health and Human Services to develop and implement a National Family Caregiving Strategy to support family caregivers, including the many who support individuals with autism. The RAISE Act has already been approved by the U.S. Senate and is currently being considered by the U.S. House of Representatives. Family caregivers, especially parents and siblings, require support and resources to assist in caring for their loved ones with autism. Many family caregivers do not receive training and other assistance to help provide care and have difficulty locating and coordinating the fragmented services their family members need to support them across their lifetime.
H.R. 5587, the Strengthening Career and Technical Education for the 21st Century Act, is legislation that would support career and technical education (CTE) programs and help students with autism gain skills necessary for employment by reauthorizing the Carl D. Perkins Career and Technical Education Act of 2006. The U.S. House of Representatives approved of the legislation 405-5 and the bill is now being considered by the U.S. Senate. Increased support services for and access to CTE programs can help address the unmet needs of transition-age youth with autism and serve as a pathway to the skills needed for employment. Approximately 500,000 youth with autism will enter into adulthood over the next ten years. Over one-third of young adults with autism never get a job or continue education after high school. CTE and work-based learning programs consistently result in successful employment outcomes for students with disabilities. Read more here
Enacted in 2006 and reauthorized in 2011, the Combating Autism Act has been the primary vehicle for federal funding for autism research, services, training and monitoring. Reauthorization legislation, called Autism CARES passed in 2014. As a result of the law, over $1.7 billion in federal funding dedicated for autism has been provided to the National Institutes of Health, the Centers for Disease Control and Prevention, and the Human Resources and Services Administration. An additional $122 million was appropriated in 2009 and 2010 through the American Recovery and Reinvestment Act.
The implementation of the 2010 Affordable Care Act (or, "Obamacare") is impacting all health insurance plans, and most directly individual and small group health plans. Autism Speaks has produced autism-specific resources to help families better understand the law.
Enacted at the federal level in 2014, the ABLE Act allows the creation of tax-free 529 accounts for individuals with disabilities, including autism, to save for their future needs without losing access to other resources. ABLE implementation is now required at the state level.
Autism Speaks is supporting action by Congress to strengthen and expand autism coverage under the military's TRICARE insurance program. Learn more about this issue and other initiatives affecting military families raising children with autism.