Autism Speaks 2019 Advocacy Highlights

December 30, 2019

Through strategic partnerships and the support of the autism community, the Autism Speaks Advocacy Team pursues policy solutions for individuals across the spectrum and throughout the lifespan. This year, we worked to 

2019 Advocacy Highlights
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Increase global understanding and acceptance of autism. 

  • Advocates from across the country joined Autism Speaks for the Advocacy Forum & Hill Day in Washington, D.C. 

  • The White House lit blue for the third year in a row. 

  • Autism Speaks participated in the second Autism Awareness Roundtable with the Indian Health Service.  

  • Volunteer Advocacy Ambassadors helped strengthen relationships with 90 U.S. Senators and over 240 U.S. Representatives. 

  • Autism Speaks collaborated on autism advocacy days at state capitols in Georgia, Connecticut, Massachusetts, Texas and Oklahoma.  

Be a catalyst for life enhancing research breakthroughs. 

  • The Autism CARES Act of 2019 was enacted into law after receiving overwhelming bipartisan support in Congress.  The CARES Act authorized more than $1.8 billion over the next five years for federal spending on autism research, services, training and reporting on the prevalence and characteristics of children with ASD. It also codifies the importance of research and services across the lifespan and for underserved communities and requires a new study to be conducted on the health and well-being of individuals with ASD across the lifespan.   

  • Fiscal Year 2020 appropriations bills included a doubling of support for the Autism Research Program at the Department of Defense, new funding for Kevin and Avonte’s law grants to safeguard against wandering and a specific message from Congress to the National Institutes of Health (NIH) urging them to aggressively invest in autism research. The bills also importantly include an increase or sustained funding for the NIH, autism programs at the Centers for Disease Control and Prevention and the Health Resources and Services Administration and special education under the Individuals with Disabilities Education Act. 

Increase early childhood screening and timely interventions. 

  • The ACE Kids Act was enacted, providing states with new options to coordinate care through a Health Home for Children with Medically Complex Conditions enrolled in Medicaid. 

  • Wyoming and Tennessee became the last two states to take action to require coverage of autism in state-regulated health benefit plans. 

  • New Mexico enacted landmark legislation that expanded coverage for autism to transition-age youth and adults covered by private, state-regulated health benefit plans as well as Medicaid. 

  • Utah and Virginia expanded their state autism insurance mandates to remove previous caps on coverage and to include transition-age youth and adults with autism. 

  • TexasNew York, Illinois and Oklahoma added coverage of autism to their State Medicaid Plans. 

  • Idaho’s State Employee Health Plan began covering applied behavior analysis (ABA). 

Improve outcomes for transition-age youth. 

  • Connecticut enacted legislation to lower the age that transition services begin to age 14. 

  • Autism Speaks hosted a Thought Leadership Summit on Transition to Adulthood that brought together thought leaders to share findings, make recommendations and determine ways to improve access to adult supports and services. 

  • Staff spoke at a congressional briefing on Civil Rights Protections in Public Schools for Children and Youth with Disabilities 

  • Autism Speaks co-hosted a sold-out legislative forum focusing on transition in Connecticut. 

Ensure access to reliable information and services throughout the life span. 

  • The Money Follows the Person program was extended by multiple legislative actions through May 22, 2020. This program provides states with continued funding to enhance access to home and community-based services. 

 

Many thanks to our Autism Speaks Volunteer Advocacy Ambassadors, our legislative champions and advocates like you who take action on behalf of the autism community! 

 

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