2017 Autism Speaks Advocacy Highlights
January 23, 2018
In 2017, Autism Speaks pursued policy initiatives to promote solutions for individuals across the autism spectrum and throughout the lifespan. Through strategic partnerships and the support of the autism community, we worked to:
Increase global understanding and acceptance of autism.
- For the first time, the White House was lit blue in recognition of World Autism Month.
- The Advocacy Team launched the Autism Speaks Volunteer Advocacy Ambassador Program. Ranging from self-advocates, parents of individuals with autism, lawyers, behavioral analysts and more, the Advocacy Ambassadors enhance Autism Speaks' advocacy efforts by promoting constituent outreach to elected officials. Since June 2017, more than 160 individuals representing 39 states have been selected to join the program.
Be a catalyst for life enhancing research breakthroughs.
- The Interagency Autism Coordinating Committee (IACC) recommended doubling the autism research budget to $685 million by 2020 as part of its updated Strategic Plan.
- The U.S. Food and Drug Administration (FDA) held a meeting and panel discussion on Patient-Focused Drug Development for Autism in which the FDA heard the community’s views on treatment approaches and personal stories of how autism affects daily life.
Increase early childhood screening and timely interventions.
- There were nearly one million social media impressions of advocacy alerts to #SaveMedicaid during Congress’s health care discussions. As a result, we helped prevent cuts to Medicaid services for individuals with autism.
- The Children's Health Insurance Program (CHIP) has been funded through March 31, 2018. Congress continues to work on a long-term funding extension.
- Alabama became the 46th state to pass meaningful autism insurance reform legislation.
- Autism health insurance benefits, including coverage for applied behavior analysis, were added to more than 12.3 million health insurance policies.
- The Federal Employees Health Benefits Program, the largest employer-sponsored group health insurance program in the world, covering more than 8 million federal civilian employees, retirees, and dependents, now covers applied behavior analysis for autism.
- The Coca-Cola Company, Raytheon, Chevron, McDonald’s and dozens of other large, self-funded companies voluntarily adopted a meaningful autism benefit. As a result, autism coverage is available to more than 2.4 million employees and their families.
- As a result of our advocacy, the nation’s largest health insurance company, United Healthcare, which has 37.7 million members in the U.S., began covering applied behavior analysis for autism as a standard benefit in 2017. Cigna is following suit beginning in 2018.
Improve outcomes for transition-age youth.
- Autism Speaks participated in the development of the Department of Health and Human Services’ Report to Congress: Young Adults and Transitioning Youth with Autism Spectrum Disorder.
- With funding from the Siemens Foundation, the National Governors Association Center for Best Practices recently selected North Carolina, Alabama, Idaho, Illinois, Nevada and Rhode Island for a program focused on creating policies to support work-based learning. Autism Speaks specifically provided consultation for the North Carolina grant, which has an autism focus, and will continue to provide technical assistance during the initiative.
- With Autism Speaks’ support, the Strengthening Career and Technical Education for the 21st Century Act (H.R. 2353) passed the U.S. House of Representatives.
- Our Advocacy Team facilitated a meeting with autism parents and Department of Education Secretary DeVos to discuss the needs of kids with autism. Additional meetings were held with other key officials within the administration including the Assistant Secretary of the Office of Special Education and Rehabilitation Services and the Commissioner of Rehabilitation Services Administration.
- In an unanimous opinion, the United States Supreme Court held in Endrew F. v. Douglas County School District RE-1 that a school must offer an individualized education plan (IEP) reasonably calculated to enable a child to make progress appropriate in light of the child’s circumstances, not one that merely enables the child to make minimal progress. Autism Speaks joined in filing a friend-of-the-court brief in the case.
Ensure access to reliable information and services throughout the life span.
- Co-hosted the 2017 Autism Law Summit with Easter Seals Bay Area, which attracted more than 230 stakeholders from 40+ states to strategize on needed policy reforms.
- The House passed the RAISE Family Caregivers Act (H.R. 3759) before adjourning for the year. The Senate is in good position to take up the bill in early 2018 (S.1028). Autism Speaks helped secure 127 co-sponsors for this legislation.
- Kevin and Avonte's Law, legislation to safeguard children with autism or other developmental disabilities who wander, was reintroduced in Congress with bipartisan support. The measure passed the Senate and awaits action by the House of Representatives.
- Thirty-one state ABLE programs are now operating. As part of the tax bill passed at the end of the year, Congress enhanced state ABLE programs by allowing rollovers from college savings accounts to ABLE accounts and by providing additional incentives to savings for ABLE beneficiaries who work.
Many thanks to each member of the Autism Speaks Volunteer Advocacy Ambassadors, our legislative champions in Congress, and advocates like you who take action on behalf of the autism community!