June 13, 2025 | Vol. MMXXV | Issue # 115

President's Budget

This week, the Administration released two documents related to its Fiscal Year 2026 budget proposal that are relevant to the AUCD Network—one on its Justification of Estimates for Appropriations Committees for the Administration for a Healthy America, and one on its Justification of Estimates for Appropriations Committees for the Administration for Children, Families, and Communities. These documents provide detail on what the Administration proposes be spent on programs in both of those agencies within the U.S. Department of Health and Human Services.

Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Programs

The Administration released this FY26 Justification of Estimates for Appropriations Committees about the Administration for a Healthy America. Information about LENDs and Autism and Other Developmental Disabilities requests can be found beginning on page 182 of the PDF. 

Below is the Grants Award Table from page 184. 

University Centers for Excellence in Developmental Disabilities (UCEDD)

The Administration released this FY26 Justification of Estimates for Appropriations Committees about the Administration for Children, Families, and Communities. Information about UCEDDs can be found both on page 238 and page 254 of the PDF.

From the budget request section:

“The FY 2026 request for Independent Living is $228,183,000. It includes a proposal allowing the expanded funding to be used to continue the activities previously provided by University Centers for Excellence in Developmental Disabilities, Developmental Disabilities Projects of National Significance, the Limb Loss Resource Center, and the Paralysis Resource Center, and providing Voting Access for People with Disabilities. Allowing funding in each state to be distributed based on state need increases program flexibility and improves the ability to target funding as needed.” (Page 238)

We understand this to mean that funding would be block granted into “Independent Living” for states to decide what to fund for many different programs. The UCEDDs are still named explicitly as being eliminated. From the proposed elimination section:

“The FY 2026 President’s Budget eliminates discretionary funding for University Centers for Excellence in Developmental Disabilities, Projects of National Significance, Limb Loss Resource Center, Paralysis Resource Center, and Voting Access for People with Disabilities.” (Page 254)

Key Takeaways

LEND

While the LENDs’ funding is lower than in previous years’ budget proposals, the fact that they were only cut minimally and not eliminated is a good sign.

UCEDD

By eliminating discretionary funding for UCEDDs, Projects of National Significance (PNS), Limb Loss Resource Center, Paralysis Resource Center, and the Voting Access for People with Disabilities Program, and collapsing them into one single funding stream under the Independent Living (IL) program, the Administration’s FY26 budget proposal threatens to undermine and erode the efforts of each of these programs. If Congress were to take up these recommendations, it would directly conflict with federal law and would result in immense nationwide harm for people with disabilities, research institutions, and the disability workforce. UCEDD elimination and block granting jeopardizes decades of progress in areas like early intervention, inclusive education, health equity, and workforce development.

Previously, the Administration had justified its proposed elimination of UCEDDs by mischaracterizing and targeting them under the guise of eliminating so-called “DEI” programs. AUCD’s statement on this proposal pushes back on the use of “DEI” as a villainized label and emphasizes how vital UCEDDs are in addressing the range of needs within the developmental disability community.

Action Item – Reach out to your Members of Congress and their staff to educate them on why this proposal would be damaging for UCEDDs, people with disabilities, and the disability workforce. Leveraging relationships and making direct connections between this budget proposal and the UCEDD(s) in your Member’s state or district is important in making an impact here. You can use the National Disability Rights Network’s form to contact Congress.

The President's budget serves as a roadmap for Congress for how the Administration wants Congress to fund the government. Congress does not have to follow the recommendations of the Administration. This gives us opportunity to continue fighting for the programs we care about. AUCD is continuing to analyze and monitor how budget proposal would affect the broader DD Network. Read AUCD’s statement here. Read this article about the cuts to UCEDDs. Read NADSP’s statement here.

Reminder: please review the guidance on educating vs. lobbying, and as you personalize these messages, use your discretion on whether you contact Members of Congress personally versus professionally, and if you need alter the language to better meet your university’s requirements.

Plain Language

The Administration released two documents that describe how they want to cut some funding for Leadership Education in Neurodevelopmental Disabilities (LEND) Programs and stop giving money to University Centers for Excellence in Developmental Disabilities (UCEDDs). The Administration doesn’t take that much money away from LENDs in comparison to some other programs, so right now we are not as worried about it. The Administration wants to get rid of UCEDDs. They want to combine the work that UCEDDs do with the work of a few other disability programs and make the Independent Living Program do all of it. This would go against the law and would do a lot of damage to disability research, supports and services, and other programs that support people with disabilities.

UCEDDs do a lot of important work for people with disabilities and their families and have had support from both Republicans and Democrats in Congress. Now, it is up to Congress how they give money to important programs like UCEDDs. AUCD does not want Congress to follow this budget suggestion because it will be extremely harmful to people with disabilities in lots of ways.  

Action Item – Reach out to your Members of Congress and their staff to educate them on why this proposal would be bad for UCEDDs, people with disabilities, and the disability workforce. You can use the National Disability Rights Network’s form to contact Congress.

Reconciliation

The reconciliation bill is in flux between proposed timelines as Senate Republicans juggle their own priorities and rules, House Republicans’ stances on proposed changes to their version of the bill, and President Trump’s interests. The House has made some changes to their bill after its passing in order to satisfy Senate reconciliation rules. The Senate will mostly be conducting closed-door negotiations to prepare their retooled bill, although Senator Thune has said he thinks some chairs of committees will opt to hold markups. After a full Senate markup of the bill, the Senate will likely then hold another vote-a-rama, which is a long process on the floor where Senators consider a bill and can add as many amendments as they want. Once they finish, they need a simple majority to pass their budget resolution.

Key Takeaways

Previously, Congressional Republicans and Administration officials had declared July 4 to be the deadline to get the reconciliation bill to the President’s desk; now, some are publicly saying that a July 4 deadline is not feasible. These small delays represent the discord that has ebbed and flowed since the beginning of the reconciliation process, and are a positive sign that the group pushing for passage is facing roadblocks. Because of pushback from people with disabilities, older adults, healthcare providers, and many more advocates, Congressional Republicans are feeling pressure to limit their proposals to cut Medicaid. We have helped to slow down this process, and we need to keep our efforts up.

If this bill passes, it would be disastrous for people with disabilities and their families, older adults, and rural communities. There are Republican Senators who are not fully sold on the Medicaid cuts and are expressing concern about how they might negatively impact rural communities, people with disabilities, families, hospitals, and more. There are also Republican Senators who have been vocal about how this reconciliation bill would not impact people with disabilities—it is important that they hear from the disability community that they are not correct in that assertion. If the House’s bill passes, states will have to change how they finance their programs and they will reduce benefits. Folks must continue to let their Members of Congress know how painful, misguided, and cruel any cuts to Medicaid would be.

Read Answers to FAQ on Medicaid and Budget Reconciliation Proposals from the Consortium for Constituents with Disabilities (CCD) and the Disability and Aging Collaborative here. 

Read Top 10 Reasons Why House Republicans’ Reconciliation Bill is Bad for Medicaid (and the ACA) from the National Health Law Program here.

Action Item - Call your Senators and educate them on the importance of Medicaid for people with disabilities and their families and caregivers--you can use AUCD’s Medicaid fact sheet and talking points. Reach your Senators by calling the Capitol Switchboard at 202-224-3121.

Plain Language

Congress is in the middle of a long process of passing bills that affect how the government spends money, which is called reconciliation. Reconciliation is sometimes a long and complicated process. This is because you don’t need as many lawmakers to vote ‘yes.’ It is usually used when lawmakers in one political party (either Democrat or Republican) want to pass bills they know the other political party wouldn’t like very much. They can do this when there is the same political party in charge of the House of Representatives, the Senate, and the Presidency. Right now, it is the Senate’s turn to work on the bill. Republicans in the House might have different priorities than Republicans in the Senate, and the Senate has different rules than the House, so some things might change about the bill.

Republicans in both the Senate and House are trying to cut Medicaid and take it away from millions of people and even make it harder for people to get health insurance in other ways. They want to spend less money on Medicaid so that the government can spend more money on immigration police and helping some rich people spend less on their taxes. We do not think this is fair.

Because many people with disabilities, older adults, and advocates are speaking out, Republicans are having a hard time moving this process forward. We can make a difference if we keep speaking out.

Action Item - Right now, people should let their Senators know how important Medicaid is for people with disabilities and their families. You can reach your Members of Congress by calling the Capitol Switchboard at 202-224-3121 and talk about how Medicaid helps people get home and community-based services, employment support, and more. If you have a personal story, it is really helpful to share! Here is some more information about Medicaid in plain language.

National Institutes of Health

On Tuesday, June 10, the Senate Appropriations Committee held a hearing on the President’s budget proposal for the National Institutes of Health (NIH). NIH Director Jay Bhattacharya testified on the budget and was questioned by Senators on both sides of the aisle about the Administration’s drastic cuts to the agency’s budget and the workforce.

The Trump Administration had previously announced $4 billion in cuts to National Institutes of Health (NIH) medical research funding by cutting from the indirect expenses that NIH pays universities and grantees to cover administrative and overhead costs. A federal court ruling paused that motion. On April 8, the Administration appealed that court ruling and is currently in litigation, which Director Bhattacharya cited as his reason for not directly answering Senator Susan Collins’ (R-ME) question about the funding cap.

In Director Bhattacharya’s testimony, he says:

“NIH remains steadfast in its commitment to advance our understanding of autism, a complex heterogenous condition that affects approximately 1 in 31 children. The FY 2026 Budget requests support for a comprehensive research effort aimed at understanding the causes of autism and improving interventions and therapies for people living with autism spectrum disorders (ASD). Leveraging highly secure, large-scale data resources and cross-agency partnerships, this initiative will take a proven research approach to analyze de-identified data to better understand the causes of conditions like autism.

Additionally, NIH will continue to build on its research into the full range of symptoms—from biological to behavioral—that people with ASD may experience. Existing NIH research also seeks to find better ways to meet the individual needs of people with ASD, including studies on early screening in childhood and on support for people with ASD as they age.”

Key Takeaways

The Administration has made a 40 percent budget cut for NIH and cut about 2,500 jobs. The research grants frozen or canceled by the Administration are included in a tracker released in April by Representative Rosa DeLauro (D-CT) and Senator Patty Murray (D-WA).

Administration officials have made conflicting statements about establishing an autism registry. First, it was announced that NIH would create an autism registry by compiling private medical records from various databases, and provide that registry data to U.S. Department of Health and Human Services Secretary Robert F. Kennedy, Jr. for his proposed research into autism. NIH then said it would not proceed with the registry. Later, NIH and the Centers for Medicare & Medicaid Services (CMS) announced that NIH would be building a data platform that will aggregate existing data to study the root causes of autism, which, to many advocates, sounded a lot like an autism registry.

Advocates expressed concern that the government would compile data without the consent of the autistic individuals they plan on studying. NIH officials said they would be culling private data from multiple sources and providing it to between “10 and 20 outside groups of researchers.” The press release announcing this data platform said that it would enable “advanced research across claims data, electronic medical records, and consumer wearables”—all of these constitute data that is not necessarily voluntarily given to the federal government.

Plain Language

The Senate Appropriations Committee held a hearing to discuss the President’s budget proposal for the National Institutes of Health (NIH). The NIH Director, Jay Bhattacharya, talked about the Administration’s goals for the NIH and what they want to work on. Both Democratic and Republican Senators asked him why the Administration wanted to cut so much funding from NIH and why they fired so many people. Congress decided how certain funding would be spent, but the Administration has stopped that funding to going to the universities, research centers, and other programs that it was supposed to go to. This affects really important health research.

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. NIH is a part of HHS. The Administration is taking away a lot of money from HHS, including programs that help people with disabilities, and saying that they want to stop people from having autism. The NIH was going to make a list of everyone in the country who has autism. They were going to get this information from a lot of different places. Autistic people were not asked about whether they wanted to be part of it or not.

Then later, the NIH said they were not going to make the list anymore, but would still do research into the causes of autism. Autism is a genetic disability, which means autistic people are born autistic. Many studies have proved this, so it is concerning that Secretary Kennedy keeps saying that he wants to find out the cause of autism. He has said things that show that he thinks there are other causes, which is not true.

New Legislation

• The Helping Communities with Better Support (HBCS) Act (S. 1989)

  • Introduced by Senator Eric Schmitt (R-MO)

  • Would expand access to home and community-based services for people with developmental disabilities

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

• The Stop Funding Genital Mutilation Act (S. 2008)

  • Introduced by Senator John Cornyn (R-TX)

  • Would prohibit Medicaid or CHIP federal funds from being used to provide gender transition procedures at any age

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

Plain Language

There are a few new bills in Congress:

• The Helping Communities with Better Support (HCBS) Act would help more people with developmental disabilities get home and community-based services.
  
  

• The Stop Funding Genital Mutilation Act would make it illegal for states to have Medicaid or CHIP (the Children’s Health Insurance Program) cover health care services that help people look and feel like the gender they want to be seen as.

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 first blog, "Personal Reflections on Fifty Years Since the Signing of the Willowbrook Consent Decree: Litigation, Policy, and the Importance of Medicaid," written by Joanne Florio Siegel, ACSW, LCSW. 

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 Gale Hann on autism and workplace accommodations.

Words to Know

Reconciliation 

This is a process of passing bills that affects how the government spends money. It is unique because usually, you need more people to vote ‘yes’ for a bill. With reconciliation, you don’t need as many lawmakers to vote ‘yes.’ This is why reconciliation is usually used when lawmakers in one political party (either Democrat or Republican) want to pass bills they know the other political party wouldn’t like very much. They can do this when there is the same political party in charge of the House of Representatives, the Senate, and the Presidency. 

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.

Block Grant

A block grant is a single sum of money that the federal government gives to states to support a group of related programs, instead of funding each program separately. This puts responsibility on states to figure out how they should fairly give out the money across different programs. This is different from some other kinds of grants from the federal government. For example, some other grants might be given to states in multiple payments instead of just one, depending on the unique needs of the people who live in the state. Some grants might have more specific instructions on how to use the money. Block grants don't tend to have those specific instructions. People are worried that states might not use the money in the way that it is supposed to be used, such as for funding UCEDDs.

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.

Gender-Affirming Care

Gender-affirming care is an example of health care. Gender-affirming care helps people’ bodies look and feel like the gender they want to be seen as.

Workforce

A workforce is a group of people who have jobs that are connected to each other. There can be many different kinds of jobs in a workforce. For example, in the caregiving workforce, there are direct support professionals, caregivers, nurses, and drivers. These jobs are not all the same but they all support people with disabilities.

Registry

A registry is a list of things or people. It could be a list of gifts that someone wants for their wedding, or a list of people who have a certain disease. The government has kept registries for different things like diseases or people who have committed certain crimes.