August 15, 2025 | Vol. MMXXV | Issue 125

In this edition:

• FY26 Appropriations & New Campaign to Protect UCEDDs

• Trump Administration Issues New Executive Order on Federal Grantmaking
  

• Supplemental Security Income
  

• New Legislation

• 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 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 House Members of Congress 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.

Trump Administration Issues New Executive Order on Federal Grantmaking

On August 8, the White House issued a new Executive Order (EO) that changes the federal grantmaking process. The EO, titled Improving Oversight of Federal Grantmaking, creates new guidelines for reviewing federal grant applications; namely, it stipulates that senior-level staff in each federal agency will have to review grants, in addition to the usual staff who would typically review grants. The EO also gives permission to agencies to terminate existing grants if they don’t line up with the Administration’s policy goals and ideologies.

The EO states that grant awards should “demonstrably advance the President’s policy priorities” and can’t be used to “fund, promote, encourage, subsidize, or facilitate: (A) racial preferences or other forms of racial discrimination by the grant recipient, including activities where race or intentional proxies for race will be used as a selection criterion for employment or program participation; (B) denial by the grant recipient of the sex binary in humans or the notion that sex is a chosen or mutable characteristic; (C) illegal immigration; or (D) any other initiatives that compromise public safety or promote anti-American values.”

Key Takeaways

This EO will significantly slow down federal grantmaking processes by adding more levels of review. Over the last 8 months, the Administration has shown blatant disregard for Congress’ power of the purse as it has frozen and rescinded funding for programs that Congress appropriated money to. Adding a requirement for senior level staff to review grants is another way for the Administration to impose its agenda onto what Congress has already authorized and appropriated.

It is also another specific example of the Administration’s targeted elimination of federal funds that address and rectify years of discrimination against marginalized communities. Programs that work to address and rectify these issues 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. 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. While disability is not explicitly mentioned in the EO, the disability community should monitor how this will be implemented. Disability affects every other community so where people of color or the LGBTQ community are being targeted, people with disabilities will be undoubtedly impacted.

Plain Language

On August 8, the White House made a new Executive Order (EO), which is a rule that government agencies have to follow. Many organizations across the country ask the federal government for money—this is called a grant. When people apply for a grant, someone in the government has to review that application. For example, if an organization wants to start a program where they provide free meals in their community, they might apply for a grant from the U.S. Department of Agriculture and ask for that money. Then, people who work at the Department of Agriculture would review that application and either agree to give the money or refuse to give the money. Now, this new EO would make it so that more people have to review grants applications. Specifically, more staff who are higher up in the department or agency will have to review grant applications. This will slow down the process of getting money to organizations who need it. This Administration has done a lot of things to give out less money to programs.

The EO says that the federal government will not give money to programs that try to make up for past discrimination by specifically supporting people who are not white. Discrimination means to treat someone badly because of who they are, including how they look. People in the Trump Administration, including the President, have said many times that they don’t think that discrimination is a big problem. The EO also says that any program that gets a grant from the federal government can’t support transgender people and can’t support nonbinary people. A transgender person is someone whose gender is not the same as the sex they were assigned at birth. A nonbinary person is someone who is not a man or a woman. Even though the EO didn’t mention disability, people with disabilities are also many different races and many disabled people are also transgender or nonbinary, so this will affect the disability community.

Supplemental Security Income

The Social Security Administration (SSA) issued a notice that laid out its plans to rescind the “Expand the Definition of a Public Assistance Household” rule, which was issued by the Biden Administration and expanded Supplemental Security Income (SSI) eligibility. This Biden-era rule had expanded the category of what counts as a “public assistance household.” Originally, this term referred to a household where everyone living in the house receives public assistance of some kind. The "Expand the Definition of a Public Assistance Household" rule changed this term to mean that there is an applicant or recipient of SSI and at least one other person who receives public income assistance in some other way. Now, under the Trump Administration, the SSA wants to change the term back to its original meaning, which was first established in 1980. SSA wants to narrow eligibility for SSI and cut benefits for some people who currently receive SSI.

The federal government can cut how much SSI beneficiaries receive if they also receive “in-kind support and maintenance,” which can include housing provided by family, as well as assets like a car. However, beneficiaries who live in “public assistance households” are exempt from this penalty because it is assumed that the other people they live with in their house are not providing them with financial or other asset assistance.

Key Takeaways

This proposal could take SSI away from hundreds of thousands of older adults and people with disabilities. The Biden Administration had changed the definition of a public assistance household with the understanding that, even if there are some people in a household who do not receive public assistance, it doesn’t mean that an SSI applicant doesn’t need that public assistance themselves. Someone could have a job that provides them with enough income to cover their own expenses—that doesn’t automatically mean that it is enough to cover the expenses of their family member or housemate.

This new proposal would change the rules so that if someone lives in a house with another person or multiple other people who are not receiving public assistance, that person is no longer considered to live in a "public assistance household." Without that protection, that person would have their benefits cut under the “in-kind support and maintenance” justification. This proposal ignores the reality of how challenging it can be to make ends meet and penalizes people who live with loved ones who do not need public assistance.

You can read more about what this will mean for people in this issue brief from the Center on Budget and Policy Priorities: Trump Administration Poised to Cut SSI Benefits for Nearly 400,000 Low-Income Disabled and Older People. An excerpt here:

“To understand how the Trump Administration’s SSI benefit cut would hurt struggling families, consider an adult with Down Syndrome requiring daily support from her parents, who themselves have low incomes and receive SNAP. Today, her monthly SSI benefit is $967, the full federal benefit rate — which is only about three-quarters of the poverty line for a single person.7 But because she lives with her parents, the expected Trump rule would subject her to the in-kind support and maintenance (ISM) penalty, which would count the cash value of her bedroom and reduce her SSI benefit. She could see her benefits slashed by one-third, leaving her with less than $700 a month to get by. She would also need to make a detailed report to SSA each time her family’s circumstances change — and the depleted SSA staff would have to analyze the report and determine whether her benefits need to change.”

Plain Language

The Social Security Administration (SSA) is in charge of Supplemental Security Income (SSI), which is a program that gives money to older adults and people with disabilities who have very little money. The SSA announced that they plan on making a new rule that would take SSI away from a lot of people. Right now, people can get SSI if they live with at least one other person who also gets money or some other kind of support from the government. The SSA wants to change the rules so that someone can only get SSI if everyone in their house gets money or other support from the government. This will take SSI away from a lot of people who really need it.

New Legislation

• The BENES 2.0 Act (H.R.4960)

  • Introduced by Representative Raul Ruiz (D-CA)

  • Would establish a system to notify people who are approaching Medicare eligibility so that they don’t have to pay late enrollment fines or face gaps in coverage

  • You can read cosponsor Rep. Dwight Evans’ (D-PA) press release here.

Plain Language

The BENES 2.0 Act would create a system that would give people important information they need to know when they are close to turning 65 years old. People can get Medicare when they turn 65 years old, but if they don’t give the government certain information at the right time, they might have to pay the government or lose health care for a little while.

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, “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 explaining the difference between budget reconciliation and annual appropriations.

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. 

Supplemental Security Income

This is money that the federal government gives to older adults, some people with disabilities, and people who have a very low income. The federal government gives this money every month.