Contact: Jess Davidson at jdavidson@aapd.com; 202-465-5528

WASHINGTON, D.C. – This week, as Congress examined the Administration’s proposed restructuring of the Department of Health and Human Services (HHS) in hearings on May 14th, a powerful coalition of Autism organizations convened a first-of-its-kind roundtable to address the state of Autism services, civil rights, scientific integrity, and representation of disability in federal policy. Robert F. Kennedy Jr., Secretary of the Department of Health and Human Services, was invited to participate, however did not respond to the request to attend; Mary Lazare, Principal Deputy Administrator at the Administration for Community Living, was in attendance. 

Hosted by the Autism Society of America (ASA), the Autistic Self Advocacy Network (ASAN), the Association of University Centers on Disabilities (AUCD), the Autistic People of Color Fund (APOC Fund), the Autistic Women & Nonbinary Network (AWN), the American Association of People with Disabilities (AAPD), The Arc, and the National Association of Councils on Developmental Disabilities (NACDD), the roundtable brought together Autistic self-advocates, parents, caregivers, researchers, and service providers to discuss the urgent needs faced by our community and to chart a united path forward. 

These organizations, along with the roundtable participants, coalesced around the urgent need for our nation’s policies, systems, services and research to reflect the reality that autistic lives are lives worth living. Whether someone has complex needs, is non-speaking, has co-occurring disabilities, or is navigating daily life with non-apparent disabilities — every person deserves dignity, support, and opportunity.  

“Something that hurts me a lot isn’t my Autism, it’s other people’s assumptions,” shared Perri Spencer, an Autistic self-advocate and a user of augmentative and alternative communication (AAC). “I’m more like their child than they realize. I hit my head, I struggle with verbal and non-verbal communication, I need a lot of sensory input, because my presentation is very dynamic and my abilities vary from day to day.”

The roundtable centered on six interwoven themes:

• The danger of proposed, and enacted cuts, to services and programs, like Medicaid
• The lack of comprehensive services for Autistic individuals with complex needs
• The urgent need for accessible, inclusive education
• A call for research that reflects community priorities—especially services and support
• Recognition of communication access as a fundamental human right
• Rejection of divisive narratives within the Autism community in favor of unity and inclusion

Participants emphasized that meaningful policy must reflect the full spectrum of Autistic experience—including those with high support needs, intellectual disabilities, co-occurring mental health and medical conditions, non-speaking individuals, and those multiply marginalized by race, gender, and poverty. The convening reaffirmed a unifying message: the path forward must be built on solidarity, dignity, and action rooted in lived experience. 

“In terms of functioning labels – the functioning label can actually depend on what type of supports I have available, both informal and formal,” said Gyasi Burks-Abbott, an Autism self-advocate, educator, and author. “My functioning has changed over the years. I can do things I can do now that I couldn’t do in the past. But also, there are things that I can do now because I have certain help. I have assistance.”

The convening took place amid the Administration’s controversial plan to cut up to 20,000 HHS staff, reduce funding by 25%, and reorganize agencies under a new “Administration for a Healthy America.” Advocates warned that these so-called ‘cost-saving measures’ include cuts to key disability-specific programs and civil rights enforcement. These cuts are further compounded by Congressional efforts to overhaul Medicaid and end marketplace subsidies, which could strip coverage from at least 13.7 million Americans.

“If Medicaid cuts were to happen, my son’s life would be in danger,” said Dr. Robert Naseef, a psychologist and father to an Autistic son. “The tragedy in my life would be if my son didn’t have around-the-clock care – that he couldn’t be alive today.” 

Additionally, there are concerns about how HHS intends to sustain meaningful, ongoing Autism research through the NIH and CDC, given the significant budget cuts to these agencies. While the majority of funding continues to be directed towards studying the causes of Autism, only a small fraction—estimated at around 8%—goes towards research into services and supports that impact and improve daily life. This misalignment is particularly troubling given that most Autistic people spend the majority of their lives in adulthood, yet funding remains disproportionately focused on early childhood.

“There’s a misalignment between the types of shifts in research funding that are being proposed by HHS versus what autistic people have said that they want, which in my understanding is heavily focused on services research,” shared Anne Roux, Researcher at Drexel University

At the Senate Health, Education, Labor, and Pensions (HELP) Committee hearing, Secretary Kennedy described the proposed Autism registry as opt-in with opt-out protections, framed as a tool to better understand Autism and evaluate therapies. Autism community members stressed the need for greater transparency, particularly regarding data use, consent processes, ethical oversight, and concerns that a registry could support harmful or unfounded research priorities. Any attempt to repurpose personal data in service of controversial theories or experimental interventions, without full community oversight, risks further erosion of trust. 

In the aftermath of Secretary Kennedy’s budget hearings and as Congress considers FY 2026 appropriations, roundtable organizers call on Congress to listen to those directly affected by systemic neglect and harmful cuts, alongside qualified and credentialed experts. 

“We are not fighting about ideology. We are fighting for our lives, our families, and our future,” said a parent and self-advocate. “We won’t accept division in our community or in our policies. We must protect everyone, especially those with the most significant needs.” 

The participating organizations reaffirm their shared commitment to solidarity, inclusion, and the transformation of public policy to reflect the full spectrum of Autistic experience. This roundtable reaffirmed that partnership with government is possible—but it must be paired with accountability. As we look ahead to what happens in Congress, in the Administration, and in actual implementation, we are committed to continuing this dialogue. It is critical that Autistic people and the supporting community are not just invited to the table—but that the table is reshaped to reflect their priorities, leadership, and rights. 

Joint Statement Signatories 

Autism Society of America
Autistic Self Advocacy Network
Association of University Centers on Disabilities
Autistic People of Color Fund
Autistic Women & Nonbinary Network
American Association of People with Disabilities
The Arc
National Association of Councils on Developmental Disabilities

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Meet the AAPD Policy Team

Michael Lewis, Vice President of Policy

Michael Lewis joined the AAPD team in December 2023, and serves as AAPD’s new Vice President of Policy. Michael has spent over a decade working in disability rights for a variety of organizations. His passion for disability policy advocacy stems from his experience as an individual with cerebral palsy. He grew up in Chapel Hill, NC and received his undergraduate degree from the Gillings School of Public Health at the University of North Carolina at Chapel Hill, as well as a Master of Arts in Government from Regent University. He is a diehard Tar Heels fan and lives in northern Virginia with his wife and five children.

Rachita Singh, Senior Policy Associate

Rachita Singh has been with AAPD’s team since 2021. She came to AAPD through her interest in voting access for the disability community, which got her involved in REV UP. Prior to joining the AAPD staff, Rachita spent a summer with AAPD through a Google Policy fellowship program.

Prior to this, she earned her Master’s in Public Policy at Duke University. Rachita’s desire to work in disability policy started from her passion for helping people and solving problems, as well as her personal experience living with epilepsy. She was born, raised, and lives in Northern Virginia and is a self-proclaimed member of the Beyhive. 

Advocacy Highlights

Supreme Court Decision in Acheson Hotels, LLC v. Laufer 

On December 5, 2023, The U.S. Supreme Court released its decision to dismiss as moot the matter of Acheson Hotels, LLC. v. Laufer. The case was brought by Deborah Laufer, who is a wheelchair user and a “tester,” which means she volunteers to put herself in situations where she may experience discrimination. Ms. Laufer sued the Coast Village Hotel in Maine (owned by Acheson Hotels at the time) for failing to provide accessibility information on its website, as required by the ADA’s reservation rule. AAPD was relieved by and glad for the decision, as the  Read AAPD’s statement on the decision here.

The Wall Street Journal ran a letter to the editor from AAPD President and CEO Maria Town that stressed the importance of testers in enforcing civil rights for all. Previously, the editorial board praised Justice Thomas’s concurring opinion in the case, in which he argued that he would have gone farther than the majority and found that the Americans with Disabilities Act does not permit “testers” like Deborah Laufer to enforce their civil rights. The letter was published in the December 17 issue of the Journal.  Read it here.

White House Visit

On December 12, 2023, the White House Domestic Policy Council convened stakeholders for a discussion about the historic $40 billion investment in Home- and Community-Based Services as part of the American Rescue Plan Act, as well as the need for more investment to address the dire shortage of direct support and care professionals. AAPD President and CEO Maria Town and Policy Michael Lewis attended the covening.

AAPD Comments on the American Community Survey

AAPD submitted comments responding to the U.S. Census Bureau’s proposal to change the current disability questions in the American Community Survey (ACS). The proposed adoption would exacerbate the underrepresentation of disabled people in the ACS. Data from the ACS is used to set funding levels for vital programs that people with disabilities rely on, such as Medicaid and housing assistance. AAPD emphasized that the Census Bureau must consult with the disability community to devise any revisions to the disability-related questions in the ACS. Read our comments here. 

Comments to OMB on AI 

AAPD submitted comments to the Office of Management and Budget on their memorandum to federal agencies regarding the use of Artificial Intelligence. AAPD emphasized the importance of consulting members of the disability community, hiring technology professionals with disabilities, and engaging experts in disability policy before agencies implement the use of AI platforms to ensure such technology does not discriminate against disabled people. Read our comments here.

Press Conference with Bishop William Barber II

AAPD President and CEO Maria Town joined Rev. Bishop William Barber II for a press conference after Bishop Barber had the police called on him by the manager of an AMC movie theater in Greenville, NC, for attempting to access and attend a movie in his own wheelchair. Bishop Barber has a disability and had attempted to bring his own, specialized chair into the accessible seating section of the theater where he and his 90-year-old mother were seeing The Color Purple. Read Maria’s remarks here.

REV UP Updates

REV UP stands for “Register, Educate, Vote, Use your Power!” and is AAPD’s program focused on building the power of the disability vote through increasing civic engagement in the disability community and improving the accessibility of elections. Learn more on the REV UP website.

2024 is off to a busy start for the REV UP network! Please continue to check our resources and efforts to ensure our elections are accessible to all on AAPD’s Election Engagement Hub throughout the 2024 election. Here are just a few highlights from the work REV UP is doing:

Presidential Election and Voting Kickoffs 

This week AAPD sent letters to the chairs of both the Democratic National Committee and the Republican National Committee addressing ableism in the race thus far. Ableism is never acceptable, and this should be especially true in the race for the highest office in the country. Read the letters here.

We also sent a memo to all major American television news networks this week, regarding accessibility and disability in the 2024 election, with important recommendations and information. The memo can be read here.

Read our press release about both the memo and letter here. 

AAPD covered accessibility and the Iowa Caucuses with help from Piper Haugun, of Disability Rights Iowa.

We also received our first response to our 2024 Disability Presidential Candidate Questionnaire from Governor Asa Hutchinson. Governor Hutchinson has since dropped out of the race, but we are grateful for his engagement and looking forward to hearing from more candidates. 

Check Vote411 for election dates in your state!

Voting Policy 

AAPD submitted comments, alongside 20 other organizations, to the U.S. Election Assistance Commission on their 2024 Election Administration and Voting Survey (EAVS). The EAVS policy survey collects data on voting policies across states, and can be an important opportunity to learn more about the disability vote.  We commended the U.S. Election Assistance Commission on the addition of several new questions that will provide useful information about accessible voting options, and suggested further additions to collect more data on accessibility. Read the comments here.

Technology Policy

As part of its work to implement the Infrastructure Investment and Jobs Act, the FCC recently held a listening session on digital discrimination. AAPD testified at the listening session and filed comments during the digital discrimination rulemaking process. Those comments can be found here.

AAPD is working with Communication First, TDI and the NACDD to improve access to Assistive and Augmentative Communication devices some people with a range of disabilities can access and use a broadband connection for communication purposes. 

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