2021 Advocacy Highlights

December 30, 2021

From Washington, D.C., to state capital cities and Zoom meetings with advocates across the country, our Advocacy Team pursued policy solutions throughout this year that protect the rights of and enhance the services and supports for people with autism and their families. Today, we celebrate the policy milestones and accomplishments that your support helped us achieve in 2021.

 

Supporting the Community During COVID-19

As the country continued to grapple with COVID-19 this year, we persisted in our efforts to help deliver COVID-related policy solutions by engaging our grassroots and weighing in directly with members of Congress to address the unique challenges faced by autistic individuals and their families. As a result of Congress hearing from our Volunteer Advocacy Ambassadors, community supporters, other disability groups and grassroots advocates from across the country, the American Rescue Plan was passed and signed into law in early 2021, addressing several urgent priorities for the autism community and delivering:

American Rescue Plan graphic with list of relief items
  • Over $12.6 billion in emergency funding for home and community-based services (HCBS);
  • $3 billion in dedicated funding for IDEA programs;
  • $1,400 stimulus payments for dependents over the age of 16, marking the first-time dependents 17-years-old and up were eligible for stimulus payments; and
  • Expanded telehealth services and other flexibilities for autism services and supports.

In addition to advocating for priorities within COVID-specific bills, our advocacy has focused on ensuring that important legislative priorities for autistic individuals and their families are included in other major initiatives being considered by Congress. While Congress will work to attempt to finalize these bills in 2022, our advocacy, and particularly the efforts of our ambassadors and community supporters, has led to substantial progress.

 

Fighting to fund advancements in autism research and services

In 2021, we continued our efforts to advocate for increased federal investment in autism research and services to address challenges experienced by autistic individuals across the spectrum and throughout the lifespan. Even though Congress has yet to complete work on its annual spending bills, our advocacy has helped create the potential for substantial progress. Some highlights include:

research appropriations graphic

A record 90 members of the U.S. House of Representatives signed a letter to congressional leaders in support of a significant increase in autism research funding. This is the largest number of members to sign on to a letter regarding autism research and services appropriations. Our volunteer advocates played a key role in securing the support of this diverse, bipartisan group of representatives from across the country.

We successfully advocated for the U.S. House to increase autism research and services funding. In July, the House passed an appropriations bill containing several important priorities that we supported, including:

  • A $10 million increase in funding for autism-related activities at the Centers for Disease Control and Prevention (CDC). This would be the first increase in CDC funding for autism-related activities in 10 years.
  • A substantial increase in funding for the National Institutes of Health (NIH); and for the first time, a specific call from Congress for the NIH to invest in key gaps in autism research, including services across the lifespan, racial/ethnic disparities, and co-occurring health conditions that autistic individuals experience at higher rates.
  • Additional funding to support autism-related activities at the Health Resources and Services Administration (HRSA), including programs that help train future health professionals to provide better health care services for autistic individuals. 

 

Increasing Services across the Lifespan

Autism Speaks advocates’ collective action resulted in congressional offices receiving 14,000 letters supporting a historic increase in funding for home and community-based services (HCBS). As a result of the advocacy of Autism Speaks and other disability grassroots advocates across the nation, the U.S. House of Representatives passed a $150 billion investment in HCBS as part of the Build Back Better Act, alongside additional funding to increase the number of direct support workers who provide in-home and community-based supports. This was a milestone first step and as Congress continues to work to find agreement on a final social spending package, we will continue to work with congressional offices on fulfilling the promise of improved home and community-based services.

 

Success in the States

Our state government affairs staff worked across the country on behalf of people with autism and their families. Among a variety of state policy issues and initiatives, two major areas of progress were transition age services and access to health care services. We led the charge in Nebraska to pass a law that lowered the minimum age at which Individualized Education Plan (IEP) transition planning must begin. We supported similar legislation in Florida and set the stage for future action on transition planning in California. In North Carolina, new legislation to create a professional license for BCBAs should expand access to and reduce costs of treatment for children with autism. Similarly, our work in Texas to raise the Medicaid reimbursement rate for autism services will increase access to care through a more adequate provider network.

California: We advocated to lower the state’s Individualized Education Plan (IEP) minimum-required transition planning age from 16 years old to 14 years old/freshman year. This policy change was included in recommendations of a legislatively created task force that will sponsor two related state bills in the 2022 state session. We will advocate for passage of the bill containing our language.

Florida: We supported a new law that further lowers the age at which high school students’ IEP teams are required to begin transition planning from age 14 (which was already below the national standard of age 16) to students’ seventh-grade year or when they turn 12 years old, whichever happens first. We also advocated for the passage of legislation which prohibits the use of seclusion and limits the use of restraint with special education students in Florida public schools.

Georgia: The Georgia Department of Education rolled out the Families of Children with Special Needs Reimbursement program to help with educational expenses relating to the COVID-19 pandemic.

Illinois: We worked to address lack of meaningful access to some autism services within the children’s Medicaid program and distributed guidance on how to access developmental disability waiver services in light of changes to the database that registers individuals who seek or may have future need for DD Waiver services.

Oklahoma: The Oklahoma Insurance Department issued a bulletin which removed the state’s caps on coverage for autism therapies and treatments. It nullified the state insurance law’s maximum benefit of 25 applied behavior analysis (ABA) therapy hours per week and cap of $25,000 per year for ABA, noting both as discriminatory under federal law. It also characterized the state law's diagnosis age restrictions as discriminatory.

North Carolina bill signing
North Carolina bill signing

Nebraska: We worked with a legislative champion and led a coalition to pass a new law which lowered the minimum age at which IEP transition planning must begin to 14 years old or freshman year.

New York: New York took a small step in improving access to ABA therapy services for Medicaid-enrolled children. We will continue to work with state agencies and elected officials to ensure that the structure of this program and relevant reimbursement rates are adequate and will provide meaningful access to ABA services.

North Carolina: A new law on which we worked for several years created a professional license for Board Certified Behavior Analysts (BCBAs), the professionals who provide ABA therapy. This action streamlined state regulation and bureaucracy in a way that should expand access to treatment and reduce costs for children with autism in North Carolina.  

Ohio: Thanks to the help of advocates and partners, Ohio increased funding for the state’s Autism Scholarship Program. The program helps provide families with the opportunity to select educational, therapeutic and behavioral services that best meet the individualized needs of their child.

Texas: The Texas Education Agency rolled out Supplemental Special Education Services (SSES) for students with autism and other disabilities, which provided eligible parents/caregivers with access to funds to address the impact of COVID-19 school closures. We also led a coalition that has been aggressively advocating to improve the state Medicaid children’s autism benefit. Resulting from that work the Health and Human Services Commission raised the reimbursement rate for ABA to create a more adequate network of providers.

 

Elevating the Voices of Advocates Across the Country

Crucial to each of these policy milestones and initiatives were the stories shared by autism community members on how additional research funding, improved access to services and additional support will impact their lives.

Advocates preparing for virtual Hill meetings
Advocacy Forum 2022

In March, 200 advocates from 42 states and D.C. participated in our virtual 2021 Advocacy Forum & Hill Day. In a single day, they collectively attended over 180 virtual Capitol Hill meetings with members of Congress and/or staff. Through storytelling, they portrayed their every-day autism experiences and explained the positive impact that members of Congress would have by supporting our policy requests for additional COVID-relief and federal funding for autism research and services.

Additionally, over 375 Volunteer Advocacy Ambassadors demonstrated leadership in advocating year-round to their federal legislators through monthly communications and regular meetings with members of Congress and/or their staff.

Each of you – through your donations, emails or calls to elected officials and storytelling – helped fuel our mission. We are grateful for the collective action by you and your fellow advocates, and we look forward to advancing new policies on behalf of the autism community in 2022.

Happy New Year from your Autism Speaks Advocacy Team!

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