H.R. 6, the 21st Century Cures Act, will 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 allows the NIH Director to require those whose research is fully funded by NIH to share their data. 21st Century Cures will help organize collaborative research through a clinical trial data system. It requires 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.
S.2614, also known as Kevin and Avonte’s Law, will reauthorize the expired Missing Alzheimer’s Disease Patient Alert Program and include new provisions to support people with autism. This legislation will help families locate missing loved ones who have autism or other conditions that may cause them to wander away from caregivers. The bill allows Justice Department grants to be used by law enforcement agencies and nonprofits for education and training programs to prevent wandering. The bill also provides access to resources to help individuals who become separated from their caregivers. The grants will 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, will 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. 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.
HR 4708, also known as the Credit for Caring Act, will provide family caregivers a federal tax credit of up to $3,000 for those who qualify. The Tax credit will provide eligible family caregivers caring for loved ones with autism some financial assistance to help cover the costs of caring for their family member. The tax credit can be used to pay for home care, respite and other supports that individuals with autism may need. Family caregivers provide 37 billion hours of unpaid care which is valued at $470 billion annually. Other groups including AARP, National Multiple Sclerosis Society and the National Council on Aging support the Credit for Caregiving Bill.
The Carl D. Perkins Career and Technical Education Act of 2006 should be reauthorized so that career and technical education (CTE) programs more fully include and support students with disabilities. Autism Speaks believes that increased support services for and access to CTE programs, especially in work-based learning and career exploration opportunities, can help address the unmet needs of transition-age youth with autism and serve as a pathway to the skills needed for employment and self-sufficiency. 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. Perkins funded CTE programs provide the skills training and experience that are critical for guiding youth successfully toward their goals during the exit of high school and into employment or continuing education.In April 2014, the 21st Century Cures initiative was launched by Energy and Commerce Committee Chairman Fred Upton (R-MI) and Representative Diana DeGette (D-CO) to accelerate the rate of innovation and research in medicine. American scientists and researchers lead the world, but thousands of diseases and disorders lack effective treatments. The bipartisan leaders have worked closely with committee colleagues, patients, innovators, researchers, and stakeholders to outline policies that will improve the lives of countless Americans, including people affected by autism. 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.