August 8, 2025 | Vol. MMXXV | Issue 124

In this edition:

• FY26 Appropriations & New Campaign to Protect UCEDDs

• National Institutes of Health

• Department of Health and Human Services

• AUCD Materials

• Words to Know

FY26 Appropriations & New Campaign to Protect UCEDDs

*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.*

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 also 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 bill in early September, 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.

Plain Language

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 is the bill that 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.

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 full 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:

• 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.

• The House will have a markup meeting for their spending bill in early September. The House spending bill may not be as good as the Senate bill for the UCEDDs and disability programs, so we need to tell Members of Congress in the House what we want.

• 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.

National Institutes of Health

After initially freezing a tranche of funding that was supposed to go to the National Institutes of Health (NIH), the Administration last week released the funding after pressure from lawmakers on both sides of the aisle in Congress. The President’s Budget has proposed a 40 percent budget cut to NIH; this was rejected by the Senate Appropriations Committee, which recently passed appropriations legislation out of committee that increases the NIH budget by $400 million.

The Government Accountability Office (GAO) on Tuesday released a report saying that NIH has illegally withheld funds appropriated by Congress. The report states that the Trump Administration has failed to follow requirements in the Impoundment Control Act, which lays out rules for when a president can cancel funding appropriated by Congress. The Administration had directed NIH to cancel grants, contracts, and other funds “related to diversity, equity, and inclusion. In doing so, the agency terminated more than 1,800 grants between February and June, and did not publish grant review meeting notices between late January and early March, effectively freezing funding.” The fact that the Department of Health and Human Services, which the NIH is under, failed to inform Congress or GAO of whether the funding was being spent in another way was also an issue flagged in the report.

Key Takeaways

Previously, Senator Katie Britt (R-AL) sent a letter with 13 other Republican Senators urging the Trump Administration to release NIH funding that was appropriated in the Fiscal Year 2025 Full-Year Continuing Appropriations and Extensions Act, which President Trump signed into law earlier this year. Pressure seems to be mounting on the Administration to release funds to NIH and not withhold funding that Congress has appropriated. This is good, because the Administration’s actions have paused or completely ended critical research into disease and health conditions, including research into disability.

Plain Language

The Administration stopped money from going to programs that the National Institutes of Health (NIH) oversee. Then, they agreed to let the money go to those programs because Members of Congress in both the Democratic and Republican parties said they wanted the money to go to the programs. This funding had already been appropriated by Congress. Appropriated means that Congress passed a bill into law that said exactly where money should go. The Government Accountability Office (GAO) is a government agency that provides Congress, government agencies, and the public with important information about how the government is working. The GAO released a report that said the Administration broke the law when it stopped money from going to NIH programs. The Department of Health and Human Services (HHS) didn’t tell Congress or GAO whether the funding was being spent in another way, and the GAO said this was also a big problem.

Both Republican and Democratic Senators have said publicly that they are concerned about what the Administration is doing. They want NIH to get the funding it is supposed to have, because that funding goes towards really important research into diseases, disabilities, and healthcare issues. The Senate Appropriations Committee did not listen to the President when they made their appropriations bill. The President’s Budget shows that he wants a big cut in NIH funding, but the Senate appropriations bill gives NIH more money.

Department of Health and Human Services

On August 2, Department of Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. announced that HHS would withdraw recommendations allowing thimerosal to be used in vaccines. Thimerosal is a mercury-based preservative that has been used for decades in the United States in medicines and vaccines. There is no evidence of harm caused by the low doses of thimerosal in vaccines, except for minor reactions like redness and swelling at the injection site. Secretary Kennedy claims that thimerosal is a neurotoxin that has affected brain development in children for years, and uses the phrase “mental retardation” multiple times, despite the fact that it is a highly offensive phrase and an outdated label that disability advocates have worked hard to remove from the public’s lexicon. The Secretary also links higher rates of autism with flu shots that had thimerosal in them. Vaccines do not cause autism, but Secretary Kennedy has pushed this debunked claim for years.

Plain Language

For many years, the Department of Health and Human Services (HHS) has said that vaccines can have something called thimerosal in them. Thimerosal helps vaccines stay effective for a long time so they will still work even after they have been stored in pharmacies, doctor’s offices, and hospitals for a while. On August 2, HHS Secretary Robert F. Kennedy, Jr. announced that vaccines are not allowed to use thimerosal anymore. Even though there isn’t evidence that proves it, Secretary Kennedy says that thimerosal in vaccines has harmed many people and hurt brain development in children. He says that more people have autism because they got flu shots with thimerosal in them. This isn’t true. Vaccines do not cause autism. People might not get vaccines if they are scared vaccines will make them disabled. If people don’t get vaccines, they are more likely to get sick from diseases. 

Secretary Kennedy used the phrase “mental retardation” many times when he made this announcement. This phrase is hurtful to many people and he should not have said it. It shows that he does not respect people with disabilities and does not listen when we say that we don’t want people to use the “r” word ever again.

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 issue 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.

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 interviewing Rincon Jagarlamudi, AUCD’s Summer 2025 Policy Intern.

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. 

Thimerosal

Thimerosal helps vaccines stay effective for a long time so they will still work even after they have been stored in pharmacies, doctor’s offices, and hospitals for a while. It has been in vaccines for a long time.