 |
|
August 1, 2025 | Vol. MMXXV | Issue 123 |
|
|
|
|
In this edition:
|
|
|
FY26 Appropriations |
|
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. 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. Many other important agencies and programs that serve individuals with disabilities were proposed to be eliminated or received massive funding cuts.
On Thursday, July 31st the Senate Committee on Appropriations held a markup for the Labor Health and Human Services FY 26 Appropriations Bill. Bill markup is the process by which the 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 Thursday afternoon. Below are highlights from the bill.
-
Appropriations are directed to the Administration for Community Living (ACL): This suggests there is no senate support for dissolution (as proposed by the Administration) of ACL.
-
UCEDDs: Provides flat funding at $43,119,000
-
Autism and Other Developmental Disorders funded at $56,344,000. Flat funded from FY2024.
-
LENDs- funded at $38,245,000, FY 2024 LEND funded at $37,224,625
-
TPSID- flat funded at $13,800,000
-
Eunice Kennedy Shriver National Institute of Child Health and Human Development
-
(NICHD in NIH) – $1,779,078,000, increase of $20,000,000
-
DD Protection and Advocacy: Provides flat funding at $45,000,000
-
DD State Councils: Provides flat funding at $81,000,000
-
Independent Living: Provides flat funding at $128,183,000 from FY 2024
-
PB proposed $228,183,000 which included an increase to assume the duties of the eliminated UCEDDS, PNS, Limb Loss Resource Center, Paralysis Resource Center, and Voting Access for People with Disabilities
-
Other Eliminated Programs in PB:
-
Limb Loss Resource Center: Provides flat funding at $4,200,000
-
Paralysis Resource Center: Provides flat funding at $10,700,000
-
Voting Access for People with Disabilities: Provides flat funding at $10,000,000
-
Developmental Disabilities Projects of National Significance: Provides flat funding at $12,250,000
|
|
|
Key Takeaways |
|
The Bipartisan 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. 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. 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. 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 |
|
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. UCEDDs are important because they help people with disabilities live, learn, work, and be a part of their communities. The Administration’s plan would break up a network of programs that help people with disabilities and their families in every state and U.S. territory. Many other important agencies and programs that serve individuals with disabilities were proposed to be eliminated or received large funding cuts.
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.
On Thursday, July 31st, the Senate Appropriations Committee had their markup meeting to talk about what their government spending bill should look like. During this meeting, the Senate committee voted on how much money to give to different programs. The committee 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. 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. 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. |
|
|
|
|
|
Hearings and Markups |
-
Senate Appropriations Markup – The Senate and House Appropriations Committee’s Labor, Health and Human Services, and Education (LHHS) subcommittees have jurisdiction over funding for AUCD Network programs. The Senate Appropriations Committee marked up their Labor, Health and Human Services, and Education appropriation legislation on Thursday, July 31.
-
Senate HELP Hearing – on Thursday, July 31, the Senate Health, Education, Labor, and Pensions (HELP) Committee held a hearing on how to lower health costs and make health care more affordable.
-
Senate Finance Hearing – On Thursday, July 31, the Senate Finance Committee held a hearing to consider a few nominations, including Gustav Chiarello to be an Assistant Secretary of Health and Human Services.
|
|
|
Key Takeaways |
|
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. |
|
|
Plain Language |
-
Senate Appropriations Markup – Right now, the Senate and House Appropriations Committees are working on their plans for next year’s funding. Those plans will decide how much money AUCD Network programs will get. The Senate Committee met on Thursday, July 31 to vote on the Senate’s government spending bill. (See the FY 26 Appropriations section for more details)
-
Senate HELP Hearing – The Senate Health, Education, Labor, and Pensions (HELP) Committee works on laws and makes decisions about topics like healthcare, education, and jobs. On Thursday, July 31, the HELP Committee had a meeting to talk about ways to lower how much people pay for healthcare.
-
Senate Finance Hearing – On Thursday, July 31, a Senate Committee held a hearing to consider making Gustav Chiarello to be an Assistant Secretary of Health and Human Services (HHS). If Gustav Chiarello is confirmed as the Assistant Secretary for Financial Resources at HHS, he will manage the Department’s money and spending.
-
House Appropriations Markup – Representative Robert Aderholt from Alabama leads the House Appropriations group that decides how much money AUCD Network programs will get. He says that the markup for the House’s government spending plan will take place during the first week of September.
|
|
|
|
|
|
National Institutes of Health |
|
On July 15, Senator Katie Britt (R-AL) sent a letter with 13 other Republican Senators urging the Trump Administration to release National Institutes of Health (NIH) funding that was appropriated in the Fiscal Year 2025 Full-Year Continuing Appropriations and Extensions Act. President Trump signed that legislation into law earlier this year, and the Senators are expressing concern about the “slow disbursement rate of FY25 NIH funds, as it risks undermining critical research and the thousands of American jobs it supports.” You can read Senator Britt’s press release here. |
|
|
Key Takeaways |
|
Republican Members of Congress have been mostly publicly deferential/supportive// to President Trump, but there have been a few Republican Members who have spoken out about ensuring medical advances and important health care research is not impeded by the Administration’s Department of Government Efficiency and widespread freezing of federally appropriated funds. |
|
|
Plain Language |
|
On July 15, Republican Senator Katie Britt from Alabama and 13 other Republication Senators sent a letter asking the Trump Administration to give out the money for the National Institutes of Health. Congress had already allowed this money to be used for medical research as part of their spending bill. President Trump signed this spending bill into law earlier this year, but the money is being released slowly. The Senators are worried that this slowdown will hurt important medical research and all the jobs that depend on it.
Most Republican Members of Congress support and stand by President Trump. But some are now speaking up to make sure the Administration’s efforts to slow down or remove government spending does not harm medical research. |
|
|
|
|
|
Department of Education |
|
In June, the U.S. Department of Education released the results of its annual review of state compliance with the Individuals with Disabilities Education Act (IDEA). This evaluation is required under the IDEA and assigns states to one of four classifications: meets requirements, needs assistance, needs intervention or needs substantial intervention. The Department designated only 19 states as “meets requirements” regarding how they support students with disabilities ages 3 to 21 during the 2022-2023 school year. This number was down from 20 the previous year. The agency classified the remaining states as “needs assistance.” The District of Columbia received a more significant “needs intervention” label. In fact, all but three of states listed as “needs assistance” have maintained this deficient status for consecutive years.
This IDEA implementation rating is based on State Performance Plans and Annual Performance Reports, which assesses how states implement IDEA and outline their plans to improve implementation. |
|
|
Key Takeaways |
|
These findings indicate most American students with disabilities receive their education and services in states that are not fully meeting federal standards. Only 44% of students with disabilities live in states that “meet requirements” set by the IDEA. The inconsistency with meeting these federal requirements appear to be concerning. Only six states have held their satisfactory status over the past 12 years. This suggests that most states face challenges with effectively sustaining their special education programs.
However, it is important to note that the Department’s rating process has its flaws. From this article in Disability Scoop:
“In particular, Cortiella [Director at The Advocacy Institute] noted that scoring does not factor targets in state performance plans or how students with disabilities perform on state assessments. In addition, she said that because scoring is based on a rank-ordering of states, it is not mathematically possible for all states to achieve the “meets requirements” status.”
As the Administration proposes cuts to the Department of Education, these findings show just how important federal investment is in special education. |
|
|
Plain Language |
|
This June, the U.S. Department of Education looked at how well states follow the Individuals with Disabilities Education Act (IDEA), which helps students with disabilities. The government puts each state into groups based on how well they meet students’ needs. In the 2022-203 school year, only 19 states met the rules for helping students with disabilities ages 3 to 21. The other states were not meeting the rules set but the act. Most American students with disabilities go to school in states that are not fully meeting federal rules set by IDEA.
The rating system used by the Department of Education has problems though. The system does not look at each state’s goals or how students with disabilities do on state tests.
As the Administration talks about taking money away from the Department of Education, this review of state programs for students with disabilities shows how important it is to keep funding special education. |
|
|
|
|
|
Department of Justice |
|
On July 29, 2025, Attorney General Pam Bondi issued guidance to recipients of federal financial assistance regarding unfair discriminatory practices. Even though the memo is framed to reinforce existing federal antidiscrimination laws, it primarily targets Diversity, Equity, and Inclusion (DEI) programs. The Department of Justice (DOJ) warns that the use of protected characteristics—like race, sex, or religion —in processes like hiring, program eligibility, and promotions will violate federal law regardless of the program’s goals or missions. The guidance also criticizes the use of criteria like “lived experience” or “cultural competence” citing the connection to protected characteristics.
The memo’s extensive list of best practices to comply with federal law includes the elimination of diversity quotas and removal of training programs for specific demographics. If entities are found to be non-compliant, they risk losing their federal funding.
|
|
|
Key Takeaways |
|
While this memo does not explicitly address disability a protected characteristics under the listed statutes— Title VI of Civil Rights Act of 1964, Title VII of Civil Rights Act of 1964, and Title IX of the Education Amendments of 1972—advocates should monitor how this guidance is implemented and possibly expanded. The DOJ’s characterization of equity-focused program as discriminatory has implications for the disability community. This stance could create uncertainty around disability initiatives, especially those intended to increase employment or educational outcomes for people with disabilities. The memo signals increased scrutiny of inclusion-based programs supported by federal funding. |
|
|
Plain Language |
|
Attorney General Pam Bondi shared new rules for organizations that get money from the federal government. Even though these rules are meant to stop the unfair treatment of people, they target programs that help people from different backgrounds feel welcome and represented. The Department of Justice (DOJ) gave a list of changes that programs should make, like ending requirements to hire certain numbers of people from different groups. If programs break these rules, they could lose their government funding.
These rules do not talk about disability, but they could affect disability programs. Advocates should watch how these rules are used and affect programs that receive money from the government. |
|
|
|
|
|
New Legislation
|
-
The Disability and Age in Jury Service Nondiscrimination Act (S.2476)
-
Introduced by Senator Edward Markey (D-MA) and Representative Lateefah Simon (D-CA)
-
Would prohibit exclusion from federal jury service based on their disability or age, ensuring that seniors and people with disabilities can serve on a jury
-
You can read Representative Simon’s press release here.
-
The Keep Kids Covered Act (S.2496) (H.R.4641)
-
Introduced by Senator Michael Bennet (D-CO) and Representatives Kathy Castor (D-FL) and Derek Tran (D-CA)
-
Would guarantee continuous health coverage for children enrolled in Medicaid and the Children’s Health Insurance Program (CHIP) in response to the recent government spending bill (H.R.1) that cut funding to these programs
-
You can read Senator Bennet’s press release here, Representative Castor’s press release here, and Representative Tran’s press release here.
-
The Protect Our Hospitals Act (H.R.4807)
-
Introduced by Representative Greg Landsman (D-OH)
-
Would repeal a provision in H.R.1 that reduces the amount states can levy through provider taxes, which help states fund Medicaid and receive higher Medicaid funds from the federal government.
|
|
|
Plain Language |
-
The Protect Our Hospitals Act would take away a rule from H.R.1 that makes it harder for states to get money for Medicaid from the federal government. That bill takes money away from healthcare providers, like doctors and hospitals, who help people on Medicaid.
|
|
|
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, “Celebrating Mills and the Families Who Won This Important Case” by Denise Stile Marshall, MS. |
|
|
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 The Transformation to Competitive Integrated Employment Act. |
|
|
 |
|
|
|
|
|
|
|
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. |
|
|
|
|
|
|
