July 18, 2025 | Vol. MMXXV | Issue 121

In this edition:

• Fiscal Year 2026

• Department of Education

• New Guidance from Centers for Medicare & Medicaid Services

• Hearings and Nominations

• Administration Proposes Changes to Section 503 Regulations

• New Guidance from Pediatrician Group

• New Legislation

• AUCD Materials

• Words to Know

Fiscal Year 2026

The Administration’s FY 2026 budget proposal recommends eliminating discretionary funding for the University Centers for Excellence in Developmental Disabilities (UCEDDs) and consolidating UCEDD activities under the Independent Living program, alongside four other distinct national disability programs. This would dismantle a trusted, longstanding network that provides critical research, training, and services to individuals with developmental disabilities and their families in every U.S. state and territory.

Action Item - AUCD has launched an easy-to-use grassroots action tool that enables individuals, families, professionals, and allies to contact their Members of Congress and urge them to reject this harmful proposal and fully fund UCEDDs in FY 2026.

➡️ Take 2 minutes to act here: https://aucd.quorum.us/campaign/133226/

We encourage you to take these three steps:

1. Personalize your message to reflect the impact your UCEDD has had on your life or community

2. Share this action widely with your networks, including families, students, staff, alumni, and partners

3. Share the tool on social media, tag AUCD, and use the hashtags #SaveUCEDDs and #DisabilityAdvocacy. 

Please note - the language in this campaign constitutes lobbying as the messages directly ask to fund the UCEDDs. Please consider this when choosing the email you use to send the messages.

UCEDDs are essential to ensuring that people with developmental disabilities can live, learn, work, and thrive in their communities. With your help, we can protect this vital infrastructure from elimination and ensure continued investment in disability innovation and equity.

The House Appropriations Committee’s Labor, Health and Human Services, and Education (LHHS) subcommittee has jurisdiction over funding for AUCD Network programs. Representative Robert Aderholt (R-AL), Chairman of the LHHS subcommittee, says he expects the subcommittee funding bill to be marked up during the first week of September. The funding bill text has not yet been released.

Plain Language

The Administration wants to take away the UCEDDs. The Administration wants to combine the work of the UCEDDs with the work of a few other disability programs to make the Independent Living Program do that work. This breaks up a network of programs that help people with disabilities and their families in every state and U.S. territory. The UCEDDs do important work like research, training, and offering services that improve everyday life for people with disabilities.

Action Item – Right now, people should tell their Members of Congress how important the UCEDDs are. Ask them to say no to the harmful plan to take away UCEDD funding. You can contact your Members of Congress using AUCD’s easy online tool. Make your message personal by telling your Member of Congress how your UCEDD has helped you or your community. We encourage you to share this tool with other people you know and on social media.

UCEDDs are important because they help people with disabilities live, learn, work, and be a part of their communities. With your help, we want to protect UCEDDs from losing their funding.

Congress needs to pass a government spending bill to make sure the government is funded in 2026. Before Congress can vote on that bill, committees in the House and Senate need to first review it. This is a process called a markup and the committees are called Appropriations committees.

Right now, the House Appropriations Committee is working on their plan for next year’s funding. That plan will decide how much money the UCEDDs will get. Representative Robert Aderholt from Alabama says that the markup for this spending plan will take place during the first week of September.

During markup, lawmakers can look over a bill and share suggested changes. The committee then votes on these suggested changes. If the committee agrees on the suggested changes in a vote, the bill with the changes is sent to either the House or Senate for more discussion and voting.

Department of Education

The Supreme Court ruled that the Trump Administration can continue carrying out plans to dismantle the Department of Education, including firing nearly 1,400 employees. Previously, a group of Massachusetts cities and education groups sued the Administration over the plan and a district judge in Boston issued a preliminary injunction to put the plans on hold. The Administration appealed and the Supreme Court is now allowing the plans to move forward.

Key Takeaways

The President’s Executive Order to close the Department of Education from March, “Improving Education Outcomes by Empowering Parents, States, and Communities,” precipitated the major changes at the Department. The majority in the Supreme Court didn’t provide an explanation for their decision. Justice Sonia Sotomayor in dissent said that the Supreme Court’s decision “will unleash untold harm, delaying or denying educational opportunities and leaving students to suffer from discrimination, sexual assault, and other civil rights violations without the federal resources Congress intended. The majority apparently deems it more important to free the Government from paying employees it had no right to fire than to avert these very real harms while the litigation continues.”

The Department enforces protections for students with disabilities and houses the Office of Special Education Programs (OSEP). OSEP distributes funds from the Individuals with Disabilities Education Act (IDEA) as approved by Congress, funds essential programs to inform parents and train teachers, monitors states to make sure they’re complying with IDEA and enforces consequences for noncompliance, and more. Eight million children in the U.S. are now served under IDEA. Students with disabilities, families, and educators will all likely be affected by these changes, which AUCD will continue to monitor.

Action Item - Call your Members of Congress—your Representative and Senators—and reach out to your state officials, such as the governor’s office, to educate them on the important work that the Department of Education does to protect and support students with disabilities and their families. You can reach your Members of Congress by calling the Capitol Switchboard at 202-224-3121.

Plain Language

The Supreme Court said that the Trump Administration can continue with its plans to break up the Department of Education. The ruling says they can fire over a thousand employees in the department. A judge in Boston had ordered the Administration to pause their plans, but the Supreme Court is now letting the plans continue.

In March, President Trump signed an Executive Order to close the Department of Education. Executive Orders are official instructions the President gives to government agencies, telling them how to do their work.

The Department of Education protects students with disabilities through the Office of Special Education Programs (OSEP). OSEP gives out money from the Individuals with Disabilities Education Act (IDEA). Eight million students in the U.S. get help in school through the IDEA. Closing the Department of Education will be bad for students with disabilities, families, and teachers.

Action Item - Right now, people should let their Members of Congress know how important the Department of Education is for students with disabilities and their families. You can reach your Members of Congress by calling the Capitol Switchboard at 202-224-3121 to tell them how the Department of Education helps students with disabilities get special education services, speech therapy, job training, and more. If you have a personal story, it is really helpful to share!

New Guidance from Centers for Medicare & Medicaid Services

The Centers for Medicare & Medicaid Services (CMS) is issuing guidance to states to narrow Medicaid enrollment eligibility, saying it will not approve new or extending existing section 1115 demonstration authorities. Section 1115 of the Social Security Act allows states to use demonstration, or pilot, projects that give states flexibility to design and improve their Medicaid programs. CMS says that there are Section 1115 demonstration programs that have allowed people to stay enrolled in Medicaid or the Children’s Health Insurance Program (CHIP) for extended periods of time, sometimes beyond their eligibility. CMS says it will also not approve new or extended Medicaid-funded workforce initiatives. These initiatives use Medicaid funding for job training or employment-related activities.

Key Takeaways

This Administration has been very focused on narrowing the scope of Medicaid funding and reducing the number of people on CHIP and Medicaid. Its interest in taking Medicaid dollars away from job training and employment supports is concerning, especially considering recent statements from the Administration and the Republican majority in Congress about the need for people on Medicaid to work and the newly passed work requirements in the reconciliation bill. Advocates have stressed that access to healthcare is what helps many people gain employment; Medicaid helps keep people in the workforce by providing the upfront care and services necessary for people to work, including job supports for many people with disabilities. While Congress implements burdensome administrative requirements in the name of increasing employment among the Medicaid population, the Administration seeks to remove the job training and employment supports that help many people on Medicaid who want to work.

Plain Language

The Centers for Medicare & Medicaid Services (CMS) is a government agency that manages Medicare and Medicaid programs. CMS is telling states that it plans to make it harder for people to get and keep Medicaid coverage through certain programs. The agency says it will not approve new programs or keep current programs that let states try out new ideas to improve their Medicaid programs. CMS thinks these programs let people who do not qualify stay on Medicaid or CHIP (the Children’s Health Insurance Program) too long.

The Administration wants fewer people to have Medicaid and CHIP. They want to take Medicaid money away from job training programs. This is concerning because the Administration also wants people to be working to get Medicaid. Having healthcare helps people with disabilities get jobs. Medicaid helps people work by giving them the healthcare and services they need. The Administration says people must work to get Medicaid, but they are also taking away job training programs that helps people find work.

Hearings and Nominations

• Alex Adams Nomination at HHS – On Tuesday, July 22, the Senate Finance Committee will hold a hearing to consider the nomination of Alex Adams to be the Assistant Secretary at the Administration for Children and Families, soon to be called the Administration for Children, Families, and Communities, under the U.S. Department of Health and Human Services (HHS).
  
  

• Brian Christine Nomination at HHS – On Wednesday, July 16, the Senate Health, Education, Labor, and Pensions (HELP) Committee held a hearing to consider a few nominees, including Brian Christine to be Assistant Secretary for Health at HHS. If confirmed, he would help lead the new Administration for a Healthy America (AHA). Read Dr. Christine’s testimony here.
  
  

• Vaccine Hearing – On Tuesday, July 15, the Senate Homeland Security & Governmental Affairs Committee’s (HSGAC) Permanent Subcommittee on Investigations held a hearing called “Voices of the Vaccine Injured.” The hearing centered on witnesses who had lost loved ones or had become injured following vaccinations.

Key Takeaways

• Alex Adams Nomination at HHS - The Administration plans to move jurisdiction of the UCEDDs from the Administration for Community Living to the Administration for Children, Families, and Communities. If Alex Adams is confirmed as the Assistant Secretary, he would help lead that department. 
  
  

• HELP & HSGAC Hearings - The Administration plans to move jurisdiction of the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Programs to the Administration for a Healthy America (AHA). If Dr. Christine is confirmed as Assistant Secretary for Health, he would help lead AHA.
  
  Both the HELP and HSGAC hearing dove into current issues about vaccine safety and misinformation. In the HSGAC subcommittee hearing, Ranking Member Richard Blumenthal (D-CT) countered the dominant messaging of the majority by emphasizing the importance of vaccines for a healthy population and the established truth that vaccines do not cause autism. Senator Blumenthal entered six scientific papers into the Congressional Record that prove that vaccines do not cause autism and said this about continued efforts to link vaccines and autism:
  
  “Autism research is critically important and has made great strides in recent years, yet every dollar we devote to studying this thoroughly debunked claim is a dollar taken away from much more promising research. A dollar taken away from educators in special needs classrooms; a dollar taken away from caregivers to help overwhelmed parents. The truth is that for children born in the United States between 1994 and 2023, routine childhood vaccination is estimated to have saved well over 1 million lives.”
  
  In the HELP hearing, AHA nominee Brian Christine was questioned by many on the panel, including Chair Bill Cassidy (R-LA), about how he would promote vaccines and counter vaccine hesitancy working under HHS Secretary Robert F. Kennedy, Jr., who has promoted vaccine misinformation throughout his career. Chair Cassidy specifically mentioned that the science has shown over and over that vaccines are safe and don’t cause autism. Senator John Hickenlooper (D-CO) referenced previous reports about HHS establishing an autism registry that would rely on data from Medicare and Medicaid databases and wearable devices, and asked Dr. Christine if he was concerned by potential privacy issues. Dr. Christine said he would speak to Secretary Kennedy about it, and that he wanted to make sure the database upholds the highest level of privacy.

Plain Language

• Alex Adams Nomination at HHS – On Tuesday, July 22, a Senate Committee is holding a hearing to meet with Alex Adams to be the Assistant Secretary at the Administration for Children and Families (ACF) at the Department of Health and Human Services (HHS). This part of HHS will soon be renamed the Administration for Children, Families, and Communities (ACFC). The Administration plans to move control of the UCEDDs from the Administration for Community Living, which they closed, to the ACFC. If Alex Adams is confirmed as the new leader of the ACFC, he will help run the department that manages the UCEDDs.
  
  

• Brian Christine Nomination at HHS – The Senate Health, Education, Labor, and Pensions (HELP) Committee works on laws and makes decisions about topics like healthcare, education, and jobs. On Wednesday, July 16, the HELP Committee met with Brian Christine, who is the President’s choice to be the Assistant Secretary who manages the new Administration for a Healthy America (AHA) at HHS. The Administration plans to move control of the Leadership Education in Neurodevelopmental Disabilities (LEND) Programs to the AHA. If Brian Christine is confirmed as the new leader of AHA, he will run the department that manages the LENDs. Many Senators on the HELP Committee told Dr. Christine that he needs to make sure people know that vaccines are safe and that they don’t cause autism. People are worried because Secretary Robert F. Kennedy Jr., who is in charge of HHS, has said things that are not true about vaccines and autism. Many Senators are talking about how anyone who works for Secretary Kennedy needs to push back against his incorrect information about vaccines and autism.
  
  

• Vaccine Hearing – On Tuesday, July 15, a Senate committee held a hearing called “Voices of the Vaccine Injured.” The hearing included people who said they or their loved were hurt after getting a vaccination. In the hearing, Senator Richard Blumenthal (D-CT) said that vaccines are important for keeping people healthy and that vaccines do not cause autism.

Administration Proposes Changes to Section 503 Regulations

The Administration issued a proposed rule to revise regulations implementing Section 503 of the Rehabilitation Act. Section 503 prohibits federal contractors from discriminating against employees and applicants because of their disability status. It also requires many employers to take proactive steps to recruit and advance the employment of qualified people with disabilities. The Department of Labor, which enforces Section 503 of the Rehabilitation Act, seeks to revise regulations to better align with President Trump’s Executive Orders: “Ending Illegal Discrimination and Restoring Merit-Based Opportunity” and “Ensuring Lawful Governance and Implementing the President's ‘Department of Government Efficiency’ Deregulatory Initiative.” Those Executive Orders revoked previous executive orders which “prohibited covered contractors from discriminating in employment based on race, color, religion, sex, sexual orientation, gender identity, and national origin and required them to take affirmative action” and “prohibited covered contractors from taking adverse employment actions against applicants or employees because they inquired about, discussed, or disclosed information about their pay or the pay of their co-workers, subject to certain limitations.”

In particular, the Administration wants to rescind “the regulations at 41 CFR 60-741.42, which require contractors to invite applicants and employees to self-identify their disability status, as well as the utilization goal requirements at 41 CFR 60-741.45.” Utilization goal requirements refer to a goal that contractors should set to increase employment of people with disabilities in their company. DOL asserts that utilization goal regulations may be inconsistent with the Americans with Disabilities Act (ADA), which states that “an employer may not, prior to an offer of employment, make any disability-related inquiries, even if that inquiry is related to the job.”

Key Takeaways

Past regulations and rules under the Rehabilitation Act, the ADA, and other landmark disability laws were created to address and rectify years of discrimination and marginalization in all public settings for people with disabilities. Many of these regulations—and regulations created to address discrimination in other marginalized groups—are seen by the current Administration as discriminatory. The Administration has repeatedly used rhetoric relaying their belief that America is a meritocracy where discrimination against marginalized communities has been largely exaggerated by those communities. It is concerning that this proposed rule invokes the ADA as a reason to rescind a regulation whose aim is to increase disability employment for federal contractors.

The comment period for this rule is open until September 9, 2025.

Plain Language

The Administration wants to change how companies that work with the federal government treat employees with disabilities. Companies that work with the federal government are called contractors. The Administration wants to change parts of Section 503 of the Rehabilitation Act. Section 503 says that it is illegal for contractors to discriminate against people with disabilities who work for them or who want to work for them. Section 503 also says that these companies should make an effort to hire and promote people with disabilities.

The Department of Labor manages these rules. They want to change Section 503 so it better matches with President Trump’s Executive Orders. Executive Orders are official instructions the President gives to government agencies, telling them how to do their work.

The Administration wants to remove two requirements in Section 503 that help make sure that more people with disabilities are hired to work for contractors. First, they want to stop making these companies automatically have to ask job applicants and employees if they have a disability. Second, they want to stop making contractors set goals to hire more people with disabilities. The Department of Labor thinks these rules do not fit with the Americans with Disabilities Act (ADA). This is because the because the ADA says employers should not ask about disability status before offering someone a job.

The Rehabilitation Act and the ADA were created to stop discrimination against people with disabilities. However, the current Administration now believes these rules contribute to discrimination. It is concerning that the Administration is using the ADA to remove rules that help more people with disabilities get jobs at companies that work with the government.

People can share their opinions on the planned changes to Section 503 until September 9, 2025.

New Guidance from Pediatrician Group

The American Academy of Pediatrics recently published a clinical report in the journal Pediatrics updating guidance for evaluating children who are showing signs of developmental delays or an intellectual disability. The guidance recommends that doctors use genetic testing to more efficiently diagnose children.

Key Takeaways

While genetic testing is often recommended for children with developmental or intellectual disabilities, most children on Medicaid or the Children’s Health Insurance Program (CHIP) do not receive it. Read more highlights about the new guidance here.

Plain Language

The American Academy of Pediatrics is a group of doctors that care for children. They released new guidance saying that doctors should use genetic testing for children who show signs of developmental delays or intellectual disabilities. Genetic testing is a test that looks at how your body works to see if you have a certain medical condition. This testing can help find answers for children and their families sooner. Most children who have Medicaid or Children’s Health Insurance Program (CHIP) insurance usually do not receive this testing.

New Legislation

• The Protect Medicaid and Rural Hospitals Act (S.2279)

  • Introduced by Senator Josh Hawley (R-MO)

  • Would repeal the provisions in H.R.1 (the recently passed reconciliation bill for which Senator Hawley voted) that reduce the amount that expansion states can levy through provider taxes to receive higher Medicaid funds from the federal government, as well as the provisions related to state directed payments that could reduce Medicaid reimbursements

  • You can read Senator Hawley’s press release here.
    
    

• The Hospital Inpatient Services Modernization Act (S.2237) (H.R.4313)

  • Introduced by Senator Tim Scott (R-SC) and Representative Vern Buchanan (R-FL)

  • Would extend the Acute Hospital at Home Waiver program past its set expiration in September 2025

  • You can read Senator Scott’s press release here and Representative Buchanan’s press release here.
    
    

• The Autonomous Vehicle Accessibility Act (H.R.4419)

  • Introduced by Representative Greg Stanton (D-AZ)

  • Would help people with disabilities better access ride-hail autonomous vehicles

Plain Language

There are a few new bills in the U.S. Congress.

• The Protect Medicaid and Rural Hospital Act would remove part of the recent government spending bill (H.R.1), which is usually referred to as the reconciliation bill. That bill will make it harder for states to get enough Medicaid funding to give health care to everyone who is eligible for it. It will take money away from the health care providers, like doctors and hospitals, who help people on Medicaid. Senator Hawley voted for this bill and it became a law. Now, Senator Hawley wants to undo these parts of the law.
  
  

• The Hospital Inpatient Services Modernization Act would make sure a program that lets hospitals provide medical care to patients in their own homes instead of the hospital can continue.
  
  

• The Autonomous Vehicle Accessibility Act would make it easier for people with disabilities to use self-driving cars through apps like Uber or Lyft.

AUCD Story Collection

AUCD is collecting stories from the Network on a variety of topics to amplify the effects of this Administration on real people and our programs. If you have a story, we want to hear it. 

We are interested in stories about: 

• Medicaid and its impact on people's lives 

• The impact of dismantling ACL 

• The important work of UCEDDs, LENDs, IDDRCs, PNS’s, DD Councils, P&As

• The impact of zeroing out UCEDDs, LENDs, IDDRCs, PNS’s, DD Councils, P&As  

• Impact of grants that are being cut
  

• Stories responding to RFK Jr.’s claims about autism or the autism registry 

You can use this link to provide information and let us know if you are comfortable sharing your story with Members of Congress and their staff. 

AUCD Policy Blog

AUCD invites Network members to fill out this form if you’re interested in writing for the AUCD policy blog. We are open to a variety of issues areas, and we will follow up with you as relevant issues come up that we’d like you to write about. 

Check out our most recent blog, “A Nurse’s Training and a Mother’s Heart: Why I’m Speaking Out Against H.R.1,” written by Gloria Smith, Registered Nurse and Medical Support Coordinator at Delta Community Supports, and parent of a son with Emery-Dreifuss Muscular Dystrophy.

Disability Policy for All with Liz

Join Liz on Instagram Reels, where she provides plain language updates on policy, highlighting current issues and hot topics in federal disability policy.

Liz Weintraub is AUCD's Senior Advocacy Specialist and the host of “Disability Policy for All with Liz.” She has extensive experience practicing leadership in self-advocacy and has held many board and advisory positions at state and national organizations, including the Council on Quality & Leadership (CQL) and the Maryland Developmental Disabilities Council.

Watch Liz’s most recent video on Medicaid and work requirements.

Words to Know

Markup

This is a process where a group of lawmakers in Congress review a bill and talk about the changes they want to make to it. These changes to the bill are called amendments. During markup, lawmakers suggest changes and then vote on each change. This happens in a smaller group called a committee. Both the Senate and the House have committees, which include Senators or Representatives from the bigger group. Once markup is done in these committees and the committee votes to approve the bill, it goes to the full Senate or House for more discussion and voting.

Appropriations 

This is money that is set aside by Congress for a particular use. The appropriations process happens once a year. Money is sometimes requested by the President’s Administration or by Congress for a specific use.

CHIP 

CHIP stands for Children’s Health Insurance Program. CHIP is a program that gives health insurance to children whose parents can’t get Medicaid.

Executive Order

This is a rule made by the President that tells people in federal government what they should do. An Executive Order can change how programs in the government work, but they do not create new laws like Congress does. Presidents use Executive Orders to help put their ideas and goals into action. They can be very powerful and affect many people.