In this issue of Capitol Connection, learn more about the status of the shutdown and funding for Fiscal Year 2026. In addition, find updates on the Reductions in Force at the Department of Education and the upcoming work requirement under Medicaid expansion.  

We encourage you to visit the Autism Society’s Action Center to connect with your Members of Congress on key issues and, if you are able, please consider supporting our state and federal advocacy work with a gift during this critical time. Please donate here to keep our critical advocacy work going! Your partnership is essential as we continue fighting for meaningful policies, resources, and protections for our community. 

Government Shutdown Update 

The federal government shutdown began on October 1 and ended on November 12 following passage of a bipartisan funding package in Congress. 

Over the past few weeks, the U.S. Senate worked to negotiate an agreement to reopen the government. On November 10, the Senate passed a funding package that includes three appropriations bills covering Agriculture, the Legislative Branch, and Military Construction and Veterans Affairs programs for Fiscal Year 2026. The legislation also provides a continuing resolution (CR) to fund the rest of the federal government through January 30. 

This means that Congress must pass the remaining appropriations bills, including the Labor, Health and Human Services, and Education bill, by January 30 to avoid a partial shutdown. 

The agreement ensures that federal employees who were furloughed or required to work without pay will receive full back pay. It also reverses layoffs that occurred since October 1. In addition, the Supplemental Nutrition Assistance Program (SNAP), formerly known as food stamps, will be funded through September 2026, resolving one of the more contentious points of negotiation. The Administration’s initial opposition to extending SNAP funding during the shutdown highlights the need to avoid similar situations in the future. 

However, the package does not address the expiring enhanced health care tax credits under the Affordable Care Act (ACA), which was one of the main issues that led to the shutdown. Senate Republican Leader John Thune (R-SD) has reportedly committed to holding a vote on the extension of these subsidies by mid-December. Without congressional action, many individuals and families could see their premium payments more than double. (See this KFF report for more information and remember that the deadline to enroll in the Marketplace is December 15).

The House of Representatives was called back into session on Wednesday, November 12, marking their first day back after more than 54 days away. The House approved the funding package by a vote of 222 to 209, and the President signed it into law shortly thereafter, officially reopening the federal government. 

Department of Education Reduction in Force Update 

Following the significant reduction in force that disproportionately affected the Office of Special Education and Rehabilitative Services (OSERS), the Autism Society of America joined 60 organizations in requesting an oversight hearing. The request was directed to Senate Health, Education, Labor, and Pensions Committee Chairman Cassidy (R-LA) and Ranking Member Sanders (I-VT), as well as House Education and Workforce Committee Chairman Walberg (R-MI) and Ranking Member Scott (D-VA). 

Although some of these layoffs are reversed by court orders or by the recent government reopening package, there are multiple reports that the Department of Education is considering transferring special education programs to the Department of Health and Human Services. A Department spokesperson stated that they are “exploring additional partnerships” with other federal agencies to support these programs. 

Given this potential shift, the requested oversight hearing remains important to provide transparency and gather information on how such a plan would be implemented.  

 
Letter on Work Requirements 

The Reconciliation Package that passed over the summer requires states to begin implementing community engagement requirements, also known as work requirements, for individuals who qualify for Medicaid through expansion. States must start implementing federal Medicaid work requirements by January 1, 2027, but they may implement them earlier through waivers or state plan amendments. 

The Autism Society joined a letter with 50 other organizations urging the Administration to use guidance and rulemaking to provide maximum protection for people with disabilities, older adults, and caregivers from coverage loss or disruptions. Millions of people with disabilities, including individuals with substance use disorders and mental health conditions, qualify for Medicaid through the expansion. It is crucial that these work requirements do not create barriers to access. The Autism Society will continue to monitor this process closely. 

Department of Health and Human Services Autism Updates 

New reporting from Reuters shows that HHS Secretary Robert F. Kennedy, Jr. has walked back previous claims linking prenatal Tylenol use to Autism. The Secretary clarified that current evidence does not show Tylenol definitively causes Autism, but he advised that it should still be used cautiously during pregnancy. This statement underscores the need for careful interpretation of scientific studies and highlights the importance of relying on well-established research when making health recommendations. Autistic individuals and families deserve guidance based on rigorous, peer-reviewed science rather than speculation or rushed conclusions. 

Last week, the American Academy of Pediatrics (AAP) issued interim guidance to not recommend leucovorin (folinic acid) for routine use for Autistic children. While small studies have explored potential benefits, there is not enough robust evidence from large clinical trials to support leucovorin as a treatment for Autism. The AAP’s guidance reflects a broader principle: treatments for Autistic individuals should be grounded in strong scientific evidence and carefully evaluated for safety and effectiveness. Recommendations that are premature or based on limited data can cause confusion, wasted resources, and even harm to children and families. 

See the Autism Society’s statement on this issue from September: https://autismsociety.org/autism-research-should-be-driven-by-evidence-not-blame/ 

New Report on Caregiving State-by-State 

AARP and the National Alliance for Caregiving released their updated state by state report on Caregiving, highlighting both the similarities and differences in the experiences of family caregivers across the United States. The report examines the 63 million family caregivers who care for adults or children with complex medical conditions or disabilities. Caregiver prevalence ranges from 20 percent in Washington, D.C., to 34 percent in Mississippi, with a national average of 24 percent. 

Key findings include: 

• Nearly half of caregivers provide extensive daily assistance and spend many hours each week on care. 

• Many experience financial strain and have difficulty accessing affordable support services. 

• Access to paid caregiving depends on state policies, leaving many unpaid despite high-intensity roles. 

• Balancing work and caregiving are difficult, especially for hourly workers. 

• Caregivers face emotional stress and health challenges, and healthcare systems often overlook their needs. 

The report highlights the need for stronger support for family caregivers across the country.  

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In this issue of Capitol Connection, learn more about the current Government Shutdown and the Reduction in Force. We encourage you to visit the Autism Society’s Action Center to connect with your Members of Congress on key issues and, if you are able, please consider supporting our state and federal advocacy work with a gift during this critical time. Your partnership is essential as we continue fighting for meaningful policies, resources, and protections for our community. 

Government Shutdown 

At midnight on September 30, the federal government entered a shutdown after Congress failed to approve new funding for Fiscal Year 2026 or pass a Continuing Resolution (CR) to temporarily extend current funding levels. Both Republicans and Democrats introduced competing CRs that would have maintained last year’s spending levels but differed on key policy provisions. Congressional Democrats sought a CR that would reverse Medicaid cuts from H.R. 1—the “One Big Beautiful Bill Act,” enacted by Republicans through reconciliation—and permanently extend Affordable Care Act (ACA) premium tax credits. While some Republicans supported extending the ACA tax credits, there was not enough agreement to reach a deal before the deadline. The House Republican CR, which would have extended funding through November 21, excluded those healthcare measures, and Republicans rejected the Democratic proposal. Multiple votes in both chambers failed, leading to the current shutdown. The Senate is in session working to find a path forward. The House has continued to be on recess until the Senate comes to a deal. It is unclear where negotiations stand.  

Government shutdowns can delay access to critical services and assistance for the public, including individuals with disabilities and their families. While benefits funded separately from annual appropriations—such as Social Security, Medicare, Medicaid, and Section 8 housing vouchers—continue; many support services are delayed. This includes assistance with the Supplemental Nutrition Assistance Program (SNAP) and Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) benefits, energy help through the Low Income Home Energy Assistance Program (LIHEAP), housing inspections, and other federal programs that help people with disabilities and their families meet basic needs. Delays in processing applications, verifying eligibility, or providing program support can make it harder for individuals to access food, housing, healthcare, and energy assistance when they need it most, putting vulnerable populations at risk even if core benefits continue. See more in this explainer from the American Association of People with Disabilities. 

Reductions in Force 

The Administration indicated it would conduct mass reductions in force (RIFs), or layoffs, of the federal workforce during the shutdown. Beginning on October 10, these actions took place. The Autism Society has been closely monitoring the RIFs occurring within the Departments of Education and Health and Human Services. 

U.S. Department of Education 

The media reports indicate that more than 450 employees were laid off from the Department of Education. The Office of Special Education Programs (OSEP) and the Rehabilitation Services Administration (RSA) were reportedly among the hardest hit, with only a few senior staff remaining. The Autism Society is deeply concerned about how the Individuals with Disabilities Education Act (IDEA) can be effectively implemented, monitored, and overseen without sufficient staff capacity at the Department of Education.  

The Autism Society published a joint statement with over 400 national and state, local organizations urging the Administration and Congress to reverse course immediately and restore staffing and transparency at the U.S. Department of Education. Please also use our Action Alert  to message your Members of Congress on this critical issue.   

U.S. Department of Health and Human Services  

It has also been reported that more than 1,200 employees from the Department of Health and Human Services (HHS) have been laid off through the RIF process. The hardest-hit subagencies include the Centers for Disease Control and Prevention (CDC), the Substance Abuse and Mental Health Services Administration (SAMHSA), and the Administration for Strategic Preparedness and Response (ASPR). The Autism Society will continue to monitor the scope of these reductions, assess how they may affect programs and services supporting individuals with disabilities and their families, and advocate for the restoration of critical federal capacity. 

Autism and Tylenol September Press Conference 

On September 22, the White House held a Press Conference with leaders from HHS on Autism and Tylenol being correlated. The Autism Society of America supports research into Autism but is concerned that premature claims about causes or treatments can cause real harm. Autism is a lifelong, diverse disability with no single known cause or cure, and announcing unproven treatments risks traumatizing Autistic individuals, families, spreading stigma, and fostering false hope. While research such as preliminary studies on high-dose leucovorin is important, it must be rigorous, replicated, and grounded in complete science before being promoted. The Autism Society urges policymakers, researchers, and the public to prioritize research and services that improve quality of life and reflect the full diversity and needs of the Autism community. 

See the Autism Society’s statement following the press conference and a joint statement with a diverse group of Autism organizations.   

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Organizational Contacts:

AAPD: Jess Davidson, jdavidson@aapd.com; 202-465-5528

AUCD: Lillie Heigl, lheigl@aucd.org

The Arc: dilworth@thearc.org

ASAN: media@autisticadvocacy.org

Autism Society: press@autismsociety.org

WASHINGTON, D.C. – On Monday, September 22, the US Department of Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. announced the department’s actions to address what he called the “epidemic of autism.” The theories that Secretary Kennedy presented to the public demonstrate his continued disrespect for autistic people and follow a now-familiar pattern of citing debunked claims, demeaning people with disabilities, and spreading misinformation about vaccines and autism.

The White House also held a press conference on Monday where they raised unfounded concerns about acetaminophen as a potential cause of autism. Acetaminophen is commonly sold under the brand name Tylenol. The President went as far as to explicitly tell pregnant people “don’t take Tylenol,” repeated incorrect information about the history of the prevalence of autism, and called for several changes to the childhood vaccine schedule and to the ingredients of vaccines.

These unfounded and unscientific claims that Tylenol causes autism endanger the lives of pregnant people and go against the advice of the American College of Obstetricians and Gynecologists. Acetaminophen is widely considered the safest option for pregnant people when it comes to over-the-counter medication that is needed to treat pain or fevers, and it is certainly better than letting a fever go untreated. Autism existed long before Tylenol was sold. Similarly, the administration’s claims about autism and vaccines are dangerous to children, immunocompromised people, and to our nation’s public health more broadly.  Three decades of scientific research have repeatedly shown that vaccines and their ingredients do not cause autism. Claims that autism is “preventable” by taking—or not taking—certain medications are not supported by scientific consensus and serve only to perpetuate stigma against autistic people.

HHS leadership also announced approval of the drug leucovorin to “treat” autism. Limited evidence exists studying the effects of leucovorin on autistic people. The studies that do exist have small sample sizes and are not a substitute for large, robust clinical trials. Approval of this drug as an autism “treatment” at this time exposes autistic people to a range of unknown risks. Autism is complex and multifactorial, presenting differently from person to person. Autistic people need self-directed supports and services tailored to them based on their functional needs, not a one-size-fits-all solution.

Autistic people deserve respect and support. There are many policy and program changes HHS could pursue that would materially improve the lives of autistic people and our families. Avenues to provide suggestions have been limited. The only federal body specifically designed to include engagement from the autism community, the Interagency Autism Coordinating Committee (IACC), has not convened since the start of the Trump administration. The IACC is required to meet by the Autism CARES Act, which was reauthorized last year.*

This press conference and the administration’s actions come on the heels of Secretary Kennedy’s testimony before the Senate Finance Committee, during which he made more false claims about vaccines. The targeting of autism is part of a broader initiative led by Secretary Kennedy to undermine public health and well-being, undermine trust in science, and to advance harmful, ableist beliefs that make all of us less safe.

We call on policymakers to collaborate with autistic individuals, families, researchers, clinicians, and disability organizations to ensure that policy is grounded in science and responsive to community needs.

We urge public leaders, institutions, and media to uphold scientific integrity, disseminate accurate public health information, and work together to strengthen—not weaken—the infrastructure of support for the entire autism community. It is what autistic people and their families deserve.

*On the day of publication of this statement, the Federal Register posted a notice for IACC nominations. This does not change that the Committee has not convened.

Signed By:

Association of University Centers on Disabilities 

Autistic Self Advocacy Network

Autistic Women & Nonbinary Network

National Association of Councils on Developmental Disabilities

The Arc of the United States 

The American Association of People with Disabilities

The Autistic People of Color Fund

The Autism Society

Full list of endorsing organizations (rolling sign-on):

Allies for Independence

American Association on Health & Disability

Association for Autism and Neurodiversity (AANE)

Association of Programs for Rural Independent Living (APRIL)

Autistic Doctors International

Autistic Women’s Alliance

Bazelon Center for Mental Health Law

Disability Rights Education and Defense Fund (DREDF)

International Coalition Against Restraint and Seclusion (ICARS)

International Council on Development and Learning (ICDL)

The National Alliance to Advance Adolescent Health

Organization for Autism Research

Pivot Neurodiversity

The Sibling Leadership Network

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“We are thrilled to have Joe join our team as a strong leader and advocate as he advances the Autism Society’s impact into the next decade,” says Autism Society of America’s Chairman of the Board, Joe Ireland. “Joe has extensive experience with not-for-profit organizations, where he’s demonstrated proven success in fundraising, strategic planning, and operational leadership.”

“I am extremely grateful to the Board of Directors for the confidence and trust they have placed in me to be the next CEO of the Autism Society of America,” states Joe Joyce. “I look forward to leading this impactful organization into its next phase of growth, and to collaborate with our passionate affiliates, partners, supporters, and most importantly, the Autism community to empower everyone with the resources needed to live fully.”

Joyce has a comprehensive background in the insurance industry, where he’s had a record of being a transformational leader committed to business and cultural growth. He spent 25 years with the Keystone Insurers Group in Harrisburg, PA serving in a variety of leadership roles including Executive Vice President of Property, Casualty and Executive Vice President of Network Expansion and Board Chair of the Keystone Community Foundation.

Joyce has also been a passionate board member and leader for multiple not-for-profit organizations including the Autism Society of America, Autism Science Foundation, and the National Down Syndrome Society. In these roles, Joyce established long-lasting relationships with community partners to further policy efforts and fundraising activities.

Joe has a BA in Economics and Finance from LaSalle University and an MBA from Pennsylvania State University.

About the Autism Society of America

Founded in 1965, the Autism Society is the nation’s leading grassroots autism organization and exists to connect everyone in the Autism community to the support they need, when they need it. In 2024, the Autism Society and it’s 70 local affiliates served over 500,000 individuals impacted by autism through advocacy, education, information and referrals, support services, and community building at the local, state and national level. The Autism Society is committed to measurably improving the quality of life for individuals and families with autism, and to ensure that all are treated with the highest level of dignity and respect. For more information, please visit www.autism-society.org.

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Autism is a diverse, life-long disability with a complex spectrum, shaped by a combination of genetic, biological, and environmental factors. To date, no single cause or cure has been identified after decades of rigorous research. Premature claims like the association with acetaminophen risk retraumatizing autistic individuals and families, stigmatizing mothers, and diverting attention from what truly matters: ensuring Autistic people have access to the supports they need across their lifespan.

Moreover, our Council of Autistic Advisors shared that the language and tone of the press conference caused profound hurt across the Autism community. To describe an individual as being at the heart of a “horrible, horrible crisis” that is “destroying families” is not only inaccurate, it is dehumanizing and dangerous. Such language actively upends the value and lived experiences of Autistic people, painting them as a burden rather than recognizing their dignity, strengths, and humanity. Words matter, and when influential voices frame Autism through fear and despair, they reinforce stigma and create real-world harm for Autistic individuals and their families.

“Announcing a cause or treatment without rigorous, replicated science undermines trust and distracts from critical work needed for the Autism Community,” said the Autism Society of America’s Board of Directors. “What Autistic individuals and their caregivers need are expanded services, inclusive policies, and research that helps improve quality of life.”

Research on high-dose leucovorin is very preliminary. Current evidence is based on small trials, with a proposed biologic mechanism that has not been proven. Before recommending leucovorin for use within the Autism community, its safety and utility must be thoroughly understood. Without such clarity, there is a significant risk of harm or of fostering false hope among individuals and families seeking support.

Danielle Hall, Director of Health Equity at the Autism Society of America, added: “The Autism Community has endured decades of shifting theories and misplaced blame. Reviving these unfounded claims risks repeating those harms. What we need is a commitment to inclusive healthcare, education, employment, and lifelong supports.”

The Autism Society calls on policymakers, researchers, and the public to engage directly with Autistic individuals, families, advocates, and experts to shape Autism research and services. Efforts must prioritize improving access to healthcare, education, employment, and community living and must reflect the full diversity and needs of the Autism community across the lifespan.

About the Autism Society of America
The Autism Society of America is the nation’s oldest and largest grassroots Autism organization, dedicated to creating connections and empowering everyone in the Autism community with the resources needed to live fully.

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In this issue of Capitol Connection, we bring you critical updates on federal policies, funding decisions, and advocacy efforts that directly impact the autism community. From congressional debates on FY2026 appropriations to proposed rule changes affecting home care workers, disability employment protections, and education data collection, there is a great deal at stake right now. The Autism Society is working every day to ensure that the voices of individuals with autism and their families are heard at every level of government — but we can’t do it alone. We encourage you to visit the Autism Society’s Action Center to connect with your Members of Congress on key issues and, if you are able, please consider supporting our state and federal advocacy work with a gift during this critical time. Your partnership is essential as we continue fighting for meaningful policies, resources, and protections for our community. 

Upcoming Webinar on Robert Roberson, Autism & Injustice 

This powerful and timely virtual panel will explore the intersection of Autism and the criminal justice system, spotlighting the case of Robert Roberson — an Autistic man whose experience highlights the systemic misunderstandings that arise when neurodivergence is overlooked in legal proceedings. We invite you to join us for this critical conversation as we work toward greater understanding, reform, and advocacy. 

Register and watch livestream here: https://www.facebook.com/share/16t7Q4MqTx/ 

Congressional Updates 

FY2026 Appropriations 

Congress faces a September 30 deadline to pass 12 appropriations bills or approve a continuing resolution (CR) to keep the federal government funded. While many bills have advanced through committee, only three have passed the House floor, and none have passed the Senate floor. Because the House and Senate have proposed very different funding levels, Congress will likely need to pass a continuing resolution to maintain current funding levels while negotiations continue. In the meantime, we encourage everyone to use our Action Alert  to urge your Members of Congress to fully fund critical programs that support our communities.  

The Autism Society most closely tracks the Labor, Health and Human Services, Education and Related Agencies funding bill. 

Senate Appropriations Labor, HHS, Ed Committee Bill 

Status: Passed committee with strong bipartisan support (26-3 vote). 

Wins for the Disability Community: 

• Rejected the Administration’s proposal to eliminate funding for the University Centers for Excellence in Developmental Disabilities (UCEDDs) and consolidate them under the Independent Living program. 

• Protected funding for the Individuals with Disabilities Education Act (IDEA) by blocking proposals to reduce or restructure funding. 

• Maintains IDEA funding at just over $15 billion, consistent with FY2025 levels. 

Includes strong protections requiring: 

• No IDEA funds or programs can be transferred to other agencies. 

• The Department of Education must maintain adequate staffing to carry out its responsibilities. 

• Impact: This bill safeguards special education funding and preserves critical disability-related programs. 

House Appropriations Labor, HHS, Ed Committee Bill 

Status: Passed committee but differs from the Senate bill. 

Key Points: 

• Maintains funding for IDEA at FY2025 levels but does not include the Senate’s added protections for fund distribution. 

• Continues funding for essential disability programs, including: 

• PAIMI (Protection and Advocacy for Individuals with Mental Illness) 

• PAVA (Protection and Advocacy for Voting Access) 

• PAIR (Protection and Advocacy for Individual Rights) 

• UCEDDs 

• Developmental Disabilities (DD) Councils 

• Independent Living Programs 

• DD Projects of National Significance 

• Certified Community Behavioral Health Clinics 

Provides: 

• A slight funding increase for the Mental Health Block Grant. 

• A slight decrease for the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). 

• A large decrease in Title I Grants to LEAs. 

The Autism Society is encouraged that both House and Senate bills continue funding IDEA and other critical health and disability programs. However, we strongly support the Senate’s added protections and funding language and will continue advocating for their inclusion in the final FY2026 appropriations package. 

Senate Finance Hearing on Health Care 

On September 4, the Senate Committee on Finance held a hearing titled “The President’s 2025 Health Care Agenda,” where Health and Human Services (HHS) Secretary Kennedy testified on the department’s priorities and recent actions. The hearing was marked by sharp questioning from Senators on both sides of the aisle, reflecting growing concerns over several HHS decisions. 

Senators raised questions about the recent dismissal of Dr. Susan Monarez, the Senate-confirmed Director of the Centers for Disease Control and Prevention (CDC), as well as the removal of several members of the Advisory Committee on Immunization Practices (ACIP). They also pressed Secretary Kennedy on HHS policies related to COVID-19 vaccine recommendations and an upcoming report on autism “causation,” which could have significant implications for the autism community. 

The Autism Society will continue monitoring these developments closely and analyzing the potential impact of HHS actions on individuals with autism and their families.  

Administration Updates 

Proposed Rule on Home Care Workers and Minimum Wage/Overtime 

The U.S. Department of Labor (DOL) has proposed a new rule that would roll back important protections for home care workers. The rule, announced on July 2, 2025, would undo changes made in 2013 that guaranteed federal minimum wage and overtime pay for many domestic workers, including those providing in-home care. Before 2013, under older rules from 1975, many home care workers and live-in domestic employees were excluded from these basic protections. The 2013 update closed that gap, ensuring that home care workers — including those hired through agencies — were finally covered by minimum wage and overtime requirements. Now, the DOL wants to reverse those gains. If finalized, the proposed rule would again allow agencies and other third-party employers to deny minimum wage and overtime pay to many home care workers. The DOL claims this change would reduce costs for families and expand access to in-home care. 

However, the Autism Society, along with a coalition of advocates, strongly opposes this proposal (see comments here). Removing wage and overtime protections will make it harder to recruit and retain qualified workers, worsening an already severe workforce shortage. It would also undermine the quality of care, as high turnover and constant retraining disrupt families who rely on consistent, trusted caregivers. For more than a decade, the home care industry has successfully adapted to these protections, which have helped stabilize the workforce and improve care for people with disabilities and older adults. Rolling back these rights would take us backward, returning to a time when many workers faced substandard wages and working conditions and threatening the quality and reliability of care for those who depend on it. For these reasons, the Autism Society urges the Department of Labor to preserve the current protections and reject the proposed rule. People with disabilities, older adults, and the dedicated workers who support them deserve better.  

Proposed Rule to Rescind Hiring of People with Disabilities in Government 

The Department of Labor’s Office of Federal Contract Compliance Programs (OFCCP) has proposed a rollback of employment protections for people with disabilities under Section 503 of the Rehabilitation Act of 1973. Under current rules, federal contractors are required to take meaningful steps to hire people with disabilities and avoid discrimination. This includes a 7% utilization goal for hiring qualified individuals with disabilities and a requirement for contractors to invite applicants and employees to self-identify as having a disability — a key tool for tracking progress and ensuring accountability. The proposed rule would eliminate both of these protections, removing the 7% hiring goal and ending the self-identification requirement. The administration argues that these changes are justified under the Americans with Disabilities Act (ADA), but there is no conflict between the ADA and Section 503. In fact, these practices have been essential for expanding workforce access and ensuring federal contractors prioritize hiring people with disabilities. 

The Disability Advocacy Community worries that rolling back these protections would make it harder for people with disabilities to secure jobs, especially at a time when millions of positions remain unfilled across the economy. With more than 70 million Americans with disabilities, reducing opportunities for workforce participation would hurt both workers and employers, undermining efforts to address ongoing labor shortages. 

For these reasons, the Autism Society has joined multiple letters to comment in opposition to the proposed rule and urge the Department of Labor to maintain the current protections under Section 503. Expanding, not limiting, access to employment is essential for building a stronger workforce and ensuring equal opportunity for all. 

Education Proposed Civil Rights Data Collection (CRDC) 

The Department of Education released their proposed information collection for the mandatory Civil Rights Data Collection (CRDC) for school years 2025-26 and 2027-28. All public local educational agencies (LEA) and elementary and secondary schools are required to respond to this data collection requests to aim towards equal educational opportunities. The proposed questionnaire includes inquiries that the Consortium for Constituents requested- including questions on instruction type, non-LEA data, informal removal, and inquires on how schools are completing threat assessments. See comments the Autism Society signed onto here.  

Resources for State Advocacy 

One Big Beautiful Bill Analysis 

Following the passage of the One Big Beautiful Bill in July with over 1 trillion dollars cut to Medicaid over the next ten years, partner organizations are preparing and releasing great resources for advocates to use on the state level. The Autism Society will continue to work with organizations to equip state advocates to protect autism Medicaid funding.  

• Webinar from Justice in Aging on Medicaid Cuts 

• Webinar from NHELP on Preparing for Work Requirements  

• State by State Analysis from the Center for Children and Families at the Georgetown McCourt School of Public Policy 

• District level Health Care Coverage Analysis by the Center for American Progress 

Report on Caregiving  

AARP and the National Alliance for Caregiving have released there 2025 Report on Caregiving in the United States.  They find that nearly one in four adults, or 63 million Americans in total, provide ongoing care for an adult or a child with a disability. This is an increase of 20 million individuals from 2015 to 2025. They find that financial strain is widespread, and training is lacking.  

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By Greg Scaduto 

The pond behind a modest apartment complex in Clinton, Massachusetts, likely seemed, on certain mornings, like an innocent thing – a glassy, greenish expanse reflecting the sky. Recently, it became the site of a tragedy whose sorrow is almost unspeakable. Brady Cassidy, an eight-year-old with Autism, eloped from the safety of his family’s home and drowned. Like so many children with autism, he was drawn inexorably to the water. 

Every parent or caregiver of a child with autism learns that the spectrum is not merely a collection of clinical descriptors; it is also a geography of yearning. Many children on the spectrum are powerfully, magnetically attracted to water – bathtubs, pools, lakes, ponds – drawn by a sensory experience they cannot articulate but feel in the deepest part of themselves. Water soothes. Water quiets the static in the mind. Water can feel, to them, like the only safe place in the world. 

But it is also, tragically, one of the most dangerous. Drowning is among the leading causes of death for children with autism. Those of us raising autistic children understand how swiftly the ordinary can become catastrophic. A door is left ajar. A safety lock, undone. A gate latch doesn’t catch. The distance between the living room and the water is a matter of seconds, but the consequences are infinite. 

I cannot read about Brady without recalling my own son, Teddy. He, too, is on the spectrum and non-verbal. He even looks a bit like him. When we moved to a small Dallas suburb in 2021, we bought a house with a pool in the backyard – a luxury, yes, but more than that, a place where Teddy could explore the water safely. That pool became the axis around which our family’s summers revolved. Every morning, before the heat became oppressive, we would slip into the water together. Teddy was tentative at first, clinging to me with that small, fierce grip that parents of autistic children know so well. But little by little, he began to trust the buoyancy. By the end of that first summer, he was diving to the bottom to retrieve plastic rings, popping up triumphant, water streaming from his hair, his whole body radiant with pride. 

When you have a child whose days can be marked by overwhelm – by noise, by light, by the unkindness of people who don’t understand – the sight of him squealing with delight as his mother cannonballed into the deep end is a kind of grace. The water gave him calm. He would be at peace for hours afterward, as though the coolness had quieted something restless inside him. He grew stronger, more coordinated, more confident. Swimming was not just recreation; it was therapy, communion, and joy all in one. 

I share this not to suggest that pools are an unmitigated good – only to point out the paradox. The very thing that offers so much comfort can also be the thing that takes a person’s life. And so this is both a warning and an invitation. If you have a loved one with autism, please take a multi-level approach. Lock every gate. Install alarms on doors. Consider locative technology. Teach your loved one, as early as you can, to respect and survive the water. Seek specialized support by searching for swim instructors that have received adaptive aquatics training for Autistic students. It takes two seconds to elope. Two inches of water for a tragedy. Drowning happens silently and swiftly, and there will never be enough time to wish you had done more. 

But also: if you are able, do not turn away from the water entirely. I am convinced that Teddy’s hours in the pool shaped him into the boy he is now – more centered, more physically capable, more open to connection. A safe swimming environment can be a lifeline. It can be the place where a child who struggles to feel at home in the world discovers a sense of mastery. In the water, so many of our children find relief from the intensity of their perceptions. It is one of the few places where their differences recede, and they can simply be. 

To the Cassidy family: there are no words that will ever suffice. I have no platitudes to offer you, only my grief and my solidarity as a fellow caregiver. Brady deserved every bright possibility the world could hold. He deserved a thousand ordinary days that ended with dinner and bedtime and the assumption of tomorrow. To every parent and caregiver reading this: hold your children close. If we are honest, we must admit this could have happened to any of us; the difference between ordinary life and unendurable loss is sometimes no more than a moment’s distraction or a stroke of chance.  

Respect the water. But do not fear it so completely that you deprive your child of the joy it can bring when approached with preparation and care. Some of my best memories – some of Teddy’s best days – happened in that Texas pool. Each dive, each shriek of laughter, was a small victory over the isolation that autism can impose. And each time we swam, I reminded myself that vigilance and wonder are not mutually exclusive. They are the dual obligations of love. 

In the shimmering blue of a pool, a child can discover who he is. But no body of water, however inviting, can be trusted to keep him safe. That is our burden and our responsibility. May we carry it with the seriousness it deserves – and the hope that every child will be given the chance to come back up for air. 

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For more information, and free safety resources, visit AutismSociety.org/water-and-wandering. 

The post When the Water Calls: A Warning and an Invitation for Parents of Children with Autism appeared first on Autism Society.

In this issue of Capitol Connection, see an analysis of the reconciliation package that recently passed Congress. In addition, find updates on new legislation and administrative action. We encourage you to visit the Autism Society’s Action Center to connect with your Members of Congress on key issues. 

Reconciliation Bill 

The reconciliation bill passed the Senate on July 1, 2025, with a vote of 51-50 and Vice President Vance having to break the tie. The Senate made multiple changes to the House version of the package, including more extensive cuts to Medicaid. Senators Tillis (NC), Collins (ME), and Paul (KY) were the three Republicans to vote no. Due to changes in the text, the package had to return to the House, where it ultimately passed the at a vote of 218-214 with Representative Massie (KY) and Fitzpatrick (PA) being the only Republicans who voted no. See the Autism Society’s statement on the bill’s passage here.  

Cuts and changes to Medicaid total 1 trillion dollars over the next ten years and will severely restrict state budgets, which can result in many changes to the program for our community. Most impactful provisions include a restriction on provider taxes, work requirements, state directed payments, and a rescission of regulations. The Autism Society was also tracking the inclusion of a new 1:1 tax credit for individuals who donate to state-sponsored scholarship voucher programs for private schools. The Senate made changes to this provision that will lessen its impact. In addition, the permanent extension of three ABLE Account programs was also included in the final law. Find helpful guides and resources below to understand the new law further. The Autism Society will continue to prepare resources and guidance to help families and individuals advocate and navigate the anticipated changes in care, coverage, and services. 

• Summary from the Arc to learn more and review effective dates. 

• Table of state-by-state impact of bill  

• Budget Reconciliation Act Implementation Dates For Select Medicaid & Health Provisions (high level – focused on implementation dates) 

• Budget Reconciliation Act Implementation Dates, Funding, and Authorities for Medicaid & Select Health Provisions (more detailed – includes dates, implementation funding, and CMS/HHS roles in administering certain provisions) 

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Plain Language 

The Senate passed a big bill called the reconciliation bill. The vote was very close, 51 to 50, and Vice President Vance had to break the tie. The Senate made changes to the original version of the bill that came from the House. These changes included bigger cuts to Medicaid. Three Republican Senators—Tillis (NC), Collins (ME), and Paul (KY)—voted no. 

Because the Senate changed the bill, it had to go back to the House of Representatives. The House passed the final version with a narrow vote of 218 to 214. Two Republicans, Representatives Massie (KY) and Fitzpatrick (PA), voted no. 

The bill includes over $1 trillion in cuts and changes to Medicaid over the next 10 years. This will make it harder for states to pay for Medicaid and may lead to less services for people with disabilities.  The Autism Society will make guides to help understand and advocate for Medicaid in the states.  

Appropriations  

Congress is continuing work on the 12 annual appropriations bills needed to fund the federal government for Fiscal Year 2026. Lawmakers must pass all appropriations bills—or a continuing resolution—by September 30 to avoid a government shutdown. 

The Autism Society, alongside our partners, is actively advocating for full funding of essential health, education, and civil rights programs. One of our top concerns is the proposed elimination of the University Centers for Excellence in Developmental Disabilities (UCEDDs) in the Administration’s budget request. The Autism Society has signed multiple coalition letters urging Congress to protect the UCEDD network. We are also closely monitoring threats to programs under the Individuals with Disabilities Education Act (IDEA) Part D—such as Parent Training and Information Centers—and early education grants. These programs are at risk of being block-granted, which would consolidate funding into a single pool for states to allocate, potentially leaving critical line-item programs unfunded.  

The Autism Society remains deeply engaged in the appropriations process to ensure that people with Autism and their families have continued access to the services and supports they need. 

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Plain Language 

Congress is still working on 12 bills that are needed to fund the government for the 2026 budget year. They have until September 30 to pass all of these bills or agree on a short-term plan. If they don’t, the government could shut down. 

Some funding could be at risk, including some education and health research programs. We are working with other groups to protect all important funding. 

The Autism Society will continue to speak up to make sure people with Autism and their families keep getting the services and support they need. 

Legislation Tracker 

Multiple pieces of legislation that the Autism Society supports have been introduced and seen some movement since the new Congress started in January.  

The Autism Family Caregivers Act was introduced by Representative Min (D-CA), Representative Fitzpatrick (R-PA) and 20 other original cosponsors in the House. This bill would establish a five-year caregiver skills pilot program to award grants to nonprofits, community health centers, or hospitals to provide skills training to family caregivers of children with autism. 

The Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population (HEADs UP Act) was introduced by Representatives Seth Moulton (D-MA), Brian Fitzpatrick (R-PA), Debbie Dingell (D-MI), and Joseph Morelle (D-NY) and would designate the IDD community as a “medically underserved community”, which would help improve access to behavioral, medical and dental care. 

The Charlotte Woodward Organ Transplant Discrimination Act was introduced by Representative Cammack (R-FL), Representative Dingell (D-MI), Senator Moody (R-FL), and Senator Hassan (D-NH) and would prohibit discrimination against people with disabilities in the organ transplant system by strengthening protections and ensuring adequate supports and accommodations. This bill passed the House unanimously under suspension of the rules. It has yet to move in the Senate.  

The Entrepreneurs with Disabilities Reporting Act was introduced by Representative Stauber (R-MN) and Representative McGarvey (D-KY) and would require the Administrator of the Small Business Administration (SBA) to submit a report to Congress identifying the challenges that small business entrepreneurs and employees with disabilities face. This bill passed the House unanimously under suspension of the rules. It has yet to move in the Senate.   

The ThinkDIFFERENTLY About Disability Employment Act was introduced by Representative Stauber (R-MN), Representative Simon (D-CA), Representative Alford (R-MO) and Representative Pappas (D-NH) and would help provide resources and assistance for individuals with disabilities who want to start their own small business or find employment, aid small businesses in hiring people with disabilities, and address accessibility concerns within small business environments. This bill also passed the House unanimously under suspension of the rules. It has yet to move in the Senate.   

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Plain Language 

A new Congress started in January. Many bills supported by the Autism Society have been introduced and are moving. 

• Autism Family Caregivers Act- This bill would create a program to train family caregivers of children with Autism. 

• HEADs UP Act- This bill would help people with Autism get better access to all health care. 

• Charlotte Woodward Organ Transplant Discrimination Act- This bill would help people with disabilities who need an organ transplant. 

• Entrepreneurs with Disabilities Reporting Act- This bill would study issues people with disabilities face in starting or running a small business. 

• ThinkDIFFERENTLY About Disability Employment Act- This bill would support people with disabilities in jobs.  

Department of Labor Withdraws Rule 

The Department of Labor has announced that it will withdraw the proposed rule from the Biden Administration that would have ended the issuance of 14(c) waivers—permits allowing employers to pay subminimum wages to employees with disabilities—and phased out their current use. The Autism Society has long been supportive of phasing out subminimum wages and had written a letter of support for the proposed rule in January.  We are disappointed in the withdrawal of this rule and will continue to work with Congress on this issue legislatively. 

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Plain Language 

The Administration said it will cancel a rule that would have stopped paying people with disabilities less than minimum wage. The rule also would have slowly ended the use of these special permissions, called 14(c) waivers. The Autism Society supports ending less than minimum wage. We are sad that the rule was withdrawn and will keep working with Congress to try to change this through a new law. 

Department of Education Funding Withheld  

Over 5 billion dollars that were supposed to be distributed to school districts on July 1st are being withheld. This funding was appropriated by Congress through the Continuing Resolution to fund Fiscal Year 2025.  The funding includes grants for migrant education, English learners education, student support, summer learning and afterschool programs, and adult education. New America has released analyses on how this has impacted every school district. The Autism Society signed onto a letter with over 600 organizations urging the Secretary of Education to release the funding.    

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Plain Language 

More than $5 billion that was supposed to go to schools on July 1st is being held back. The money includes education for migrants, English learners, after-school, and summer school. The Autism Society sent a letter with over 600 organizations asking the Secretary of Education to release the funding. 

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