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August 29, 2025 | Vol. MMXXV | Issue 127 |
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In this edition:
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FY26 Appropriations & New Campaign to Protect UCEDDs (ongoing campaign with a new update this week about House appropriations)
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Department of Labor Fair Labor Standards Act Rulemaking Comment Period Ends September 2
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Secretary Kennedy Autism Research
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White House Fires Centers for Disease Control and Prevention Director
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House Education & Workforce Report on Administration for Community Living
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Comment Request on IDEA Part B Data Requirement
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New Legislation
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AUCD Materials
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Words to Know
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FY26 Appropriations & New Campaign to Protect UCEDDs |
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*Note: FY26 appropriations are different from H.R.1, or the “One Big, Beautiful Bill Act.” H.R.1 was passed into law using the budget reconciliation process in July. FY26 appropriations are currently under consideration in the Senate.*
*UPDATE*
The House Appropriations Committee has scheduled a Subcommittee Markup for its Labor, Health and Human Services, Education, and Related Agencies bill for FY26. The markup will take place on Tuesday, September 2, at 5pm. Bill text has not yet been released.
AUCD has a new tool to protect funding for the University Centers for Excellence in Developmental Disabilities!
Take 2 minutes to act now: Campaign to Safeguard UCEDD Funding
1. Use the tool to contact both your Senators and Representative.
Thank the Senate for rejecting the proposed elimination of UCEDDs.
Urge the House to adopt the Senate’s bipartisan approach and protect disability programs in their bill.
2. Share the campaign widely.
Encourage families, students, staff, alumni, and community partners to join you.
Send the campaign to 3 people in your life and ask them to fill it out.
Post the campaign on social media, share that you participated, tag AUCD, and use hashtags #SaveUCEDDs and #DisabilityAdvocacy.
Important Note: This campaign does include direct requests for funding and constitutes lobbying. Please consider this when choosing the email address or list you use to send messages.
The Administration’s FY 2026 budget proposal recommended 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. On Thursday, July 31, the Senate Committee on Appropriations held a markup for the Labor, Health and Human Services, and Education (LHHS) FY26 Appropriations bill (S.2587). Bill markup is the process by which a bill gets voted out of committee. The bill passed out of committee 26-3. There was a lot of emphasis in the hearing about the bipartisan work that went into this bill. The bill text and report language were released on July 31.
The Senate’s bill shows a rejection by the Senate of the Administration’s desire to cut critical disability infrastructure. This is a result of strong advocacy from the disability community, but we still have a long way to go.
Senate: Now that the Senate bill has passed out of committee, it will have to be debated on the floor and put to a vote. We need to thank Senators for supporting UCEDDs and other programs in the markup but make sure they know we want this bill passed into law.
House: The House will hold a markup for its own LHHS appropriations bill on Tuesday, September 2, and this bill may not be as positive for disability programs. We need to advocate to the House ahead of markup to fund our Centers and Programs.
Congress: After the House bill passes committee and is voted on the floor, the House and Senate will have to work together to pass a funding bill they can both agree on. We need to have members advocating for us in both the Senate and the House. |
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Plain Language |
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Remember! FY26 appropriations are about spending money for many different programs. Appropriations means money that is set aside by Congress for a particular use. This is different from H.R.1, which is also called the reconciliation bill or the “One Big, Beautiful Bill Act.” H.R.1 became a law in July. H.R.1 made huge spending cuts to Medicaid, so a lot of people will have their health care taken away because of it. FY26 appropriations are different bills that haven’t yet been passed by Congress. FY26 appropriations bills are still being worked on in Congress, so we need to speak up to tell Congress what we want to see in the final bill BEFORE it becomes a law.
*UPDATE*
On Tuesday, September 2, the House will mark up their spending bill that will affect how much money the UCEDDs get. You can read more about what this means below.
AUCD has a new tool for people to tell their Members of Congress how important the UCEDDs are. The new tool explains that there is a spending bill in the Senate that gives UCEDDs a similar amount of money that they usually get, and this is good. It explains that UCEDDs support people with disabilities and their families, so we need to make sure that they have enough money to do this important work.
Take 2 minutes to act now: Campaign to Protect UCEDD Funding
1. Use the tool to contact both your Senators and Representative.
Thank the Senate for rejecting the President’s plan to get rid of UCEDDs.
Urge the House to use the same plan that the Senate used—tell them that both Democrats and Republicans in the House need to work together to protect disability programs in their bill.
2. Share the campaign widely.
Encourage families, students, staff, alumni, and community partners to join you.
Send the campaign to 3 people in your life and ask them to fill it out.
Post the campaign on social media, share that you participated, tag AUCD, and use hashtags #SaveUCEDDs and #DisabilityAdvocacy.
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.
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.
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.
The Senate Appropriations Committee had their markup meeting to talk about their government spending bill and they passed the bill—26 members voted to support the bill and only 3 voted against it. Senators from both parties (Republicans and Democrats) worked together on this bill. The committee did not agree with the Administration’s plan to take away UCEDDs and other important disability programs. Instead, the Senate Appropriations Committee wants to keep giving money to the UCEDDs and other disability programs at the same level as last year. This shows that the Senate still supports these important programs and does not want them to go away.
This happened because people with disabilities, older adults, and advocates spoke up and told Senators these programs are important. There is still more work to do:
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The full Senate still needs to vote on this bill, so we need to make sure every Senator knows that we want this bill to pass.
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The House has scheduled a markup meeting for their spending bill on Tuesday, September 2. The House spending bill may not be as good as the Senate bill for the UCEDDs and disability programs, so we need to tell House Members of Congress what we want.
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After both the Senate and the House agree on their spending bills, they will need to work together to make one final bill.
We can make a difference in this process if we keep speaking up! Watch this Disability Policy for All with Liz video about why UCEDDs are important. |
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Department of Labor Fair Labor Standards Act Rulemaking Comment Period Ends September 2 |
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On July 1, U.S. Department of Labor Secretary Lori Chavez-DeRemer announced plans to rescind 63 regulations, including a rule that granted minimum wage and overtime pay to millions of home care workers. The proposed rule would change how the Fair Labor Standards Act (FLSA) applies to certain “domestic service” employees by reverting current regulations back to the 1975 version of the FLSA, which exempted many domestic service providers from minimum wage and overtime requirements. The comment period for this NPRM ends on September 2. You can read the press release from the Department of Labor here. |
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Key Takeaways |
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One of the Trump Administration actions that lays the groundwork for these new plans to rescind regulations is the Executive Order to eliminate ten existing regulations for every new rule. This announcement to change the home care worker overtime pay is justified by the Administration, who says that the current regulation “might discourage essential companionship services by making these services more expensive.” These regulations follow the Administration’s pattern of deregulation and putting hard-won advancements in fair pay for domestic service workers and home care workers in jeopardy. |
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Plain Language |
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The Secretary of Labor, Lori Chavez-DeRemer, is changing a rule that makes sure home care workers earn minimum wage and receive overtime pay. This change means many home care workers may not get fair pay, even though they do important work. These changes to rules are part of the Trump Administration’s bigger plan to have less government rules. People can tell the Department of Labor what they think about this rule change. The deadline to comment on the rule change is September 2. |
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Secretary Kennedy Autism Research |
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On Tuesday, U.S. Department of Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. said during a cabinet meeting that his research into autism interventions would be ready to present starting in September. In April, Secretary Kennedy pledged that “by September we will know what has caused the autism epidemic and we’ll be able to eliminate those exposures.” On Tuesday, President Trump asked Secretary Kennedy: “the autism is such a tremendous horror show…How are you doing?” In response, Secretary Kennedy said that his team was “finding interventions, certain interventions, now that are clearly almost certainly causing autism.” |
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Key Takeaways |
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Many of the Administration’s actions reveal a concerning stance on people with disabilities, including the appointment of HHS Secretary Kennedy, who has long espoused the view that vaccines cause autism, promoted autism “cures,” and spread misinformation about autism.
Secretary Kennedy has been describing increases in autism diagnoses as an “epidemic” to be cured, but autistic people do not need to be eliminated or cured. Government agencies dedicated to promoting health should work to support autistic people and better understand the autism community.
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 harms that Secretary Kennedy and the President have done in stigmatizing and demonizing autism. You can reach your Members of Congress by calling the Capitol Switchboard at 202-224-3121. |
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Plain Language |
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The President and the Secretary of the U.S. Department of Health and Human Services (HHS), Robert F. Kennedy, Jr., have said and done things that show they are not supportive of autistic people. On Tuesday, President Trump, Secretary Kennedy, and other members of the President’s team had a meeting. President Trump asked Secretary Kennedy: “the autism is such a tremendous horror show…How are you doing?” Secretary Kennedy responded that his team was finding things “that are clearly almost certainly causing autism.”
This is not respectful of people who are autistic. The Autistic Self Advocacy Network (ASAN) has said this: “Autism is a developmental disability — and disability is a natural part of human diversity. Autism is something we are born with, and that shouldn’t be changed. Autistic children should get the support they need to grow up into happy, self-determined autistic adults.”
Action Item - Call your Members of Congress—your Representative and Senators—and reach out to the government officials in your state, such as the governor’s office, to educate them about the harm that President Trump and Secretary Kennedy have done by speaking so negatively and disrespectfully about autistic people. You can reach your Members of Congress by calling the Capitol Switchboard at 202-224-3121. |
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White House Fires Centers for Disease Control and Prevention Director |
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On Wednesday, the U.S. Department of Health and Human Services (HHS) announced that Centers for Disease Control and Prevention (CDC) Director Susan Monarez would no longer be the director after only a month in the position. As reported by Politico, Monarez was directed to fire a few agency leaders and refused. Additionally, HHS Secretary Kennedy’s new panel of vaccine advisers had made changes to vaccines, and Monarez had refused to sign off on those changes. The White House said that Monarez wasn’t aligned with HHS’ agenda, and three CDC officials resigned after she was fired. Secretary Kennedy is scheduled to testify about changes at the CDC at a Senate Finance Committee hearing on September 4. |
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Key Takeaways |
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In June, Secretary Kennedy fired all 17 members of the vaccine advisory panel at CDC and replaced it with 8 new advisers. Public health advocates were concerned by the new advisers, because many have expressed vaccine skepticism in the past, spread vaccine misinformation, or disagreed with the public health measures taken to keep people safe during the COVID-19 pandemic. For example, one of the members, Dr. Robert Malone, “has gained a large following for undermining the COVID-19 vaccine. A scientist who worked on early research into the mRNA technology, he became critical of the shot and made baseless and disproven claims, including falsely stating that getting vaccinated puts people who have already had COVID-19 at higher risk,” according to NPR reporting. Senate Democrats on the Finance Committee will likely question Secretary Kennedy about the instability at the CDC during his hearing. Senator Bill Cassidy (R-LA), a member of the Senate Finance committee (and Chair of the Senate Health, Education, Labor, and Pensions Committee) has said that oversight of high-profiles departures at CDC is necessary. |
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Plain Language |
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Susan Monarez, the Director of the Centers for Disease Control and Prevent (CDC) was fired because she didn’t do some things that her boss, Department of Health and Human Services Secretary Kennedy, wanted her to do. She refused to fire a few people who lead different parts of the CDC. She also refused to agree on some changes that Secretary Kennedy and a different team made to vaccines. Secretary Kennedy and this team have said some concerning things about vaccines. Vaccines are shots doctors give people to keep people from getting sick. Some people think that vaccines cause autism, but this is not true. In June, Secretary Kennedy fired a group of people who vote on what advice they will give to HHS about vaccines. Then, he hired new people. Many advocates were concerned with this new group of people. The people in this new group have all done or said things that spread incorrect information about vaccines or show they don’t agree with the things the government did to keep people safe during the COVID-19 pandemic.
Secretary Kennedy will talk more about what’s going on at the CDC at a hearing at the Senate Finance Committee hearing on September 4. A hearing is a meeting in a group of lawmakers in Congress where they invite someone to share information on a specific topic. |
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House Education & Workforce Report on Administration for Community Living |
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House Committee on Education and Workforce Ranking Member Bobby Scott (D-VA) released a new report detailing the harms of the Trump Administration’s attacks on people with disabilities. The report, “Living Independently, Participating Fully: Defending Against the Trump Administration's Attacks on People with Disabilities,” highlights the expected negative consequences of the Administration’s proposal to dismantle the Administration for Community Living (ACL). |
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Key Takeaways |
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The report references the President’s Budget proposal to eliminate the University Centers for Excellence in Developmental Disabilities (UCEDDs) (which get their core funding from ACL), Secretary Kennedy’s remarks perpetuating misinformation and insulting stereotypes of autistic people, the historic cuts made to Medicaid in H.R.1 (the reconciliation bill or “One Big, Beautiful Bill”), and how huge reductions in force (RIFs) at HHS will weaken ACL’s ability to promote community living. It also references the oversight actions that House Democrats have taken in response to these issues, including sending letters to Secretary Kennedy requesting more information about the RIFs and introducing a resolution of inquiry into the ACL dismantling, which included requesting documents from the Administration.
ACL is integral to the network of state, local, and federal government agencies that work to fulfill the spirit of the Olmstead decision and the promise of the Americans with Disabilities Act, protecting the hard-won civil rights that people with disabilities fought for. At a time when the vast majority of aging adults, and nearly all disabled people want to live in their communities, the Administration’s disruptive changes threaten to increase rates of institutionalization, homelessness, and long-lasting economic hardships. |
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Plain Language |
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The House Committee on Education and the Workforce is a group of lawmakers in Congress that work on issues around education and work. One of the lawmakers in charge of the committee, Representative Bobby Scott (D-VA), released a new report that talks about how the Trump Administration has done a lot of harm to people with disabilities. Here are some items the report mentioned:
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President Trump’s plan to close the Administration for Community Living (ACL), which is a government department that helps people with disabilities live in the community
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The Administration’s budget proposal, where they wanted to get rid of University Centers for Excellence in Developmental Disabilities (UCEDDs), which get money from ACL
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How the Department of Health and Human Services (HHS) will have a harder time helping people with disabilities because so many HHS employees were fired
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The hurtful things that HHS Secretary Kennedy has said about autistic people
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H.R.1 (also known as the reconciliation bill or the “One, Big, Beautiful Bill”) and how it will hurt a lot of people with disabilities because it makes huge cuts to Medicaid
People with disabilities and older adults deserve to be able to live in the community if they want to – it is their right. Many Democratic lawmakers on the Education & Workforce Committee are trying to make sure the Trump Administration is still following the law and supporting people with disabilities living and working in the community. |
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Comment Request on IDEA Part B Data Requirement |
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The Department of Education’s Office of Special Education and Rehabilitative Services (OSERS) is seeking comments on a proposed change to how states apply for IDEA Part B funds. Currently, under IDEA section 618(d), states are required to collect and examine data about whether “significant disproportionality” is occurring based on race in their state. This means that they need to look into whether race is playing a part in the identification of children with disabilities, disciplinary actions, and placement of children with disabilities in different educational settings. Disproportionality is a measure of educational equity which “occurs when students from a racial or ethnic group are identified for special education, placed in more restrictive settings, or disciplined at markedly higher rates than their peers.” Because the IDEA doesn’t specifically define what “significant disproportionality” means in terms of data, states are required to set a standard way to define what might constitute it quantitatively.
The new request for comments invites people to submit comments on removing the “significant disproportionality” data requirement when states apply for IDEA Part B funds. Comments are due by October 21, 2025. |
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Key Takeaways |
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Children of color who have a disability are often marginalized, are less likely to have their needs met, and disproportionately receive disciplinary action, including seclusion and restraint.
The Trump Administration has disparaged any use of federal government involvement in investigating or addressing discrimination based on race or ethnicity. The Administration has targeted and worked to stop spending federal funds on addressing and rectifying years of discrimination against marginalized communities. Programs that work to address and rectify these issues are seen by the current Administration as discriminatory; Administration officials have repeatedly used rhetoric relaying their belief that America is a meritocracy where discrimination against marginalized communities has been largely exaggerated by those communities. They often label systems or policies they don’t like as ‘DEI,’ but diversity, equity, and inclusion are not dirty words. Diversity, equity, and inclusion are central to meeting the range of needs within many marginalized communities, including the disability community. |
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Plain Language |
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The Individuals with Disabilities Education Act (IDEA) has a section called Part B. Part B has rules about how states need to support children in special education. It gives states money to make sure children with disabilities have the support they need at school. States have to ask for this money every year. There is a rule that states have to collect information about whether or not children with disabilities are being treated differently at school based on their race. Race means the color of your skin. The Administration wants to stop making states collect this information, even though it is helpful information. Many children who are not white are treated worse at school.
The Administration is asking people to comment on changing this rule. Comments are due by October 21, 2025.
The Administration has said many times that they don’t want to give any money from the federal government to anything that mentions “diversity, equity, and inclusion.” Diversity means different kinds of people who look different from each other or have different life experiences. Equity means everyone having access to the same resources, places, and information. Inclusion means including people in society. The Trump Administration has done a lot of things to stop programs that work on diversity, equity, and inclusion. |
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New Legislation |
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Plain Language |
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There are a few new bills in the U.S. Congress.
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The Wheelchair Right to Repair Act would make more information available about certain mobility devices, like a powered wheelchair. This bill would make sure the companies who made the devices provide information about how the devices can be repaired.
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The Train More Nurses Act would help the government figure out how to help more people become nurses and improve their training.
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AUCD Story Collection |
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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:
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Medicaid and its impact on people's lives
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The impact of dismantling ACL
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The important work of UCEDDs, LENDs, IDDRCs, PNS’s, DD Councils, P&As
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The impact of zeroing out UCEDDs, LENDs, IDDRCs, PNS’s, DD Councils, P&As
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Impact of grants that are being cut
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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. |
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AUCD Policy Blog |
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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, “My Summer at AUCD,” by Rincon Jagarlamudi, AUCD’s Summer 2025 Policy Intern. |
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Disability Policy for All with Liz |
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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 explaining the difference between budget reconciliation and annual appropriations. |
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Words to Know |
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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.
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. |
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