Empowering Science and Research
The year started strong as Autism Speaks successfully advocated for an increase in research for the NIH and Congress and President ultimately signed an omnibus appropriations bill that includes $2 billion more than the previous level of $30.1 billion which was the NIH’s largest budget increase in a decade.
In December, President Barack Obama signed the landmark biomedical innovations bill known as the 21st Century Cures Act to increase funding of the National Institutes of Health, modernize clinical trials and accelerate the rate of innovations, including the development of personalized and precision medicines that could benefit people with autism. Autism Speaks worked closely with grassroots advocates and champions in Congress to include provisions that would potentially accelerate biomedical innovations for people with autism and improve patient input in the drug approval process. The law provides an additional $4.8 billion for the NIH over 10 years, including for the Precision Medicine and BRAIN initiatives.
Autism Speaks is spearheading tremendous progress in Congress to address employment and transition needs for young adults with autism. This year the US House approved H.R. 5587, Carl D. Perkins Career and Technology Education Act, legislation that would reauthorize career and technical education (CTE) programs and help students with autism gain skills necessary for employment. Autism Speaks worked with the Education and the Workforce Committee to ensure the legislation requires work-based learning to help students acquire employability and technical skills. The bill would also increase access to earlier career exploration and guidance and improve coordination with existing pre-employment and transition programs. We expect that Congress will consider this legislation in 2017.
The ABLE Act continues to be rolled out across the country, with ten states already offering tax-preferred savings accounts for disability-related expenses, most of which can be purchased across states lines. Additionally, the US Senate Committee on Finance passed several improvements to the federal legislation, including the ability to roll over contributions from a 529 college savings account to an ABLE account. These provisions are likely to be considered again as part of tax reform next year.
The education of lawmakers on a variety of issues continues. In May of this year, the U.S. House Small Business Committee, led by Chairman Steve Chabot, held a hearing on the role that small businesses can play in employing individuals with developmental disabilities. The hearing included Lisa Goring, executive vice president of programs and services at Autism Speaks and entrepreneurs employing those with autism from across the country.
Advancements in healthcare coverage
Advocates celebrated tremendous strides in insurance reform earlier this year when the Office of Personnel Management announced its carriers would be directed not to exclude coverage of applied behavior analysis (ABA) for individuals with autism starting in 2017. The FEHB program covers 8.2 million federal employees, retirees and dependents. On the state level, the advocacy team led the effort to pass meaningful autism insurance coverage in the states of Oklahoma and Ohio, the 44th and 45th states to do so.
The National Defense Authorization Act restores 2015 reimbursement rates for ABA providers to prevent further reductions in access to treatments for military dependents due to 2016 rate cuts.
Critical Safety Wins
Advocates have also celebrated strategic victories aimed at keeping individuals with autism safe. Autism Speaks has also played a key role when the US House and the US Senate passed versions of safety and wandering legislation S. 2614, better known as Kevin and Avonte's Law to make individuals with autism safer in their communities. This legislation will be considered again in the new Congress thanks the leadership of our champions on the hill and grassroots advocates across the country.
The advocacy team is partnering closely with self-advocates and families of loved ones with autism to continue to find policy solutions to meet the unmet needs of for those with autism and invites all advocates across the country to make their voices heard.
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