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

The post Autism Leaders United in Call for Action Following Roundtable in Washington D.C. appeared first on AAPD.

View the 2022 Disability Equality Index report

After near-constant disruption from the global pandemic, uncertain economic conditions, and ongoing labor shortages, today’s corporations have demonstrated resilience and creativity as they strive to make their workplaces better for everyone.

As the post-pandemic reality sets in, the battle for talent remains top of mind for many business leaders. Job openings remain at record highs, with over 11.4 million vacancies in the U.S. workforce alone. Skilled industries like healthcare and technology face worker shortages globally.

To adapt to today’s reality and stay competitive, companies need to think creatively about hiring, developing, and cultivating talent. They need to invest in their pipeline, minimize biases, be open-minded about who is qualified, and be more attentive to what a candidate is looking for in their next position.

Now more than ever, people want to work where their contributions are valued, where diversity of thought is celebrated, and where they can be part of an inclusive culture characterized by a sense of belonging. Today, job seekers are more attuned to a company’s values and commitment to social purpose. They care about how companies embrace diversity and empathize with the human experience.

The post Disability Equality Index 2022 appeared first on AAPD.

View the 2021 Disability Equality Index report

A year after COVID-19 brought workplaces and society to a halt, we find ourselves entering a new normal unlike anything we’ve seen before. The job market is tight, talent is migrating, and more workers are reassessing their jobs.

The number of workers who have seriously considered leaving their current place of work—66%, according to a new Pew Research Center survey—gives workers more leverage than they’ve had in decades. Prospective candidates have indicated a shift in their priorities: They desire better work-life balance, more inclusive workplaces, and are looking for employers who openly speak up in support of social justice issues.

Against this dynamic backdrop, companies have become more conscious about creating safe and culturally engaged workplaces and are implementing policies that prioritize the needs of their employees.

To speed up the economic recovery and to attract new talent, companies need to be more inclusive of people with disabilities. More than one billion people, or 15% of the global population, are disabled. According to the Centers for Disease Control and Prevention, 1 in 4 Americans have a disability and they are twice as likely to be unemployed than those without disabilities.

The post Disability Equality Index 2021 appeared first on AAPD.

View the 2022 Disability Equality Index report

The Disability Equality Index (DEI) is a prominent benchmarking tool for the Fortune 1000 and America’s top 200 revenue grossing law firms (Am Law 200) to gauge their level of disability workplace inclusion against competitors.

Since piloting the DEI, there has been a significant spike in participation and a growing need across all industries to utilize the DEI to advance disability inclusion across their businesses. In its sixth official year, the Disability Equality Index continues to see an increase in year-over-year participation, with the number of top-scoring companies more than quadrupling to 205 in 2020 as compared to 43 in 2015.

Over the course of the DEI, the number of employers has increased from 48 to 247, with a total workforce of 11 million people. On average, 5.5% of current employees identify as having a disability which is an increase from 3.7% in 2019.

Top-scoring DEI companies who earn a score of 80 or above receive the recognition Best Places to Work for Disability Inclusion.

The post Disability Equality Index 2020 appeared first on AAPD.