May 9, 2025 | Vol. MMXXV | Issue 111

President's Budget

Last week, the President released his “skinny” budget, which proposes massive cuts to government departments and agencies, including a 26 percent cut to the U.S. Department of Health and Human Services (HHS). Appropriators are waiting for the White House to release a bigger, more detailed budget later this month. Agency heads have started testifying in front of various Congressional committees to discuss the President’s budget proposal.

Read AUCD’s Statement: President’s Budget Undermines Decades of Disability Progress.

Plain Language

The President writes a budget that they have to send to Congress every year. The budget shows how much money they want to give to different parts of the government. It is not a law. The Administration wrote a budget and even though there is a lot of information missing from it, it recommends huge funding cuts. AUCD wrote a statement saying that we are worried about this budget and we do not want Congress to make these cuts.

Reconciliation

Committee Markups – The House Energy and Commerce Committee, Agriculture Committee, and Ways and Means Committee will start their markups next week. They are expected to make changes to Medicaid, the Supplemental Nutrition Assistance Program (SNAP), and the tax code, respectively. The Ways and Means Committee and the Energy and Commerce Committee will both start their markups on May 12 at 2:00 PM.

Resolution Against Benefit Reductions – U.S. Representatives Zachary Nunn (R-IA), Don Bacon (R-NE), and Derrick Van Orden (R-WI) introduced a resolution providing a point of order against reconciliation measures that reduce benefits under the Medicaid program or SNAP. The resolution states that people under the age of 19, people 65 or older, pregnant women, and people with a disability (as defined in the Social Security Act) are the population for which this resolution applies.

New CBO Report on Medicaid Cuts - The Congressional Budget Office (CBO) came out with a new report that analyzes the 5 topline proposals under consideration by Congressional Republicans and the estimated amount of people it would leave without health care:

1. Lowering the Federal Medical Assistance Percentage (FMAP) for the population in each state that became eligible for Medicaid under Affordable Care Act Medicaid expansion would leave 2.4 million people without coverage.
   
   

2. Most states help finance their Medicaid costs by collecting taxes from health care providers. Those amounts are returned to providers in the form of higher Medicaid payments from the federal government. Limiting or eliminating these provider taxes would leave 3.9 million people without coverage.
   
   

3. Implementing per capita caps, meaning the federal government would pay states a fixed amount of funding per Medicaid enrollee, would leave 2.9 million people without coverage.
   
   

4. Implementing per capita caps for the Medicaid expansion population in each state would leave 1.5 million people without coverage.
   
   

5. Repealing the Medicaid Eligibility and Enrollment rules, which help people in the Medicare Savings Programs cover costs and reduce administrative burdens and barriers to enrollment for applications and renewals in Medicaid and the Children’s Health Insurance Program (CHIP). Repealing these rules would leave 600,000 people without coverage.

Key Takeaways

The CBO is a non-partisan entity that analyzes Congressional proposals. The report found that millions of Americans would lose health coverage under the proposals mentioned above. It found that, in the event that any of the aforementioned proposals are implemented, states would likely have to modify their Medicaid programs and reduce spending “using three levers: reduce provider payment rates, reduce the scope or amount of optional services, and reduce Medicaid enrollment.” Previously, the CBO had scored that implementing work requirements could leave 2.5 million uninsured.

Congressional Republicans want to make these cuts to finance two main things: 

1. An extension of the Trump tax package from his first term—which gave massive tax breaks to billionaires and corporations
   
   

2. Increased immigration enforcement
   
   

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.

As Congressional Republicans plan to make changes to Medicaid and begin the markup of the House reconciliation bill in the Energy and Commerce Committee, it is vital that people let their Members of Congress know how detrimental any cuts to Medicaid would be. These cuts might be in the form of work requirements, per capita caps, decreasing the federal match, and beyond—they would all have negative consequences for people with disabilities.

Read AUCD’s Medicaid fact sheet and talking points.

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.

• Action Item - Protect Our Care has an easy tool to find your elected official and some advice on what to say - https://www.protectourcare.org/hands-off-medicaid. Call your Member of Congress and educate them on the importance of Medicaid for people with disabilities and their families and caregivers. Reminder: AUCD Network members should educate rather than lobby when talking to Members of Congress and their staff. Learn more here.

Plain Language

Congress is in the middle of a long process of passing bills that that affect how the government spends money, which is called reconciliation. Now, Congressional committees will work on their different parts of the bill. Committees are groups of lawmakers who work on a particular issue, like health care or farming. Some lawmakers are talking about taking money away from Medicaid.

Republicans in Congress want this reconciliation bill to move forward. There are some who don’t want to take Medicaid away from people, like Representatives Zachary Nunn (R-IA), Don Bacon (R-NE), and Derrick Van Orden (R-WI), who introduced a resolution in Congress to make sure a certain group of people don’t lose their Medicaid.

There is a new report from the Congressional Budget Office, which is a part of the government that is not part of either political party—like Democrats or Republicans—and does research into how much different things would cost. They found that the 5 proposals that Republicans in Congress are most likely to use to cut Medicaid would leave millions of people without health care.

• Action Item - Right now, people should let Members of Congress know how important Medicaid is for people with disabilities and their families. They can use this link to call them 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.

U.S. Department of Health and Human Services

Secretary Kennedy Hearings – On May 14, U.S. Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. will testify in front of the House Appropriations Labor, Health and Human Services Subcommittee at 9:30 AM and the Senate Health, Education, Labor, and Pensions Committee at 1:30 PM on the President’s fiscal year 2026 budget for HHS.

Nominations – On May 6, the U.S. Senate Finance Committee held a hearing to consider the nomination of James O'Neill to be Deputy Secretary of Health and Human Services and Gary Andres to be an Assistant Secretary of Health and Human Services. On May 8, the U.S. Senate Health, Education, Labor, and Pensions (HELP) Committee held a hearing to also consider James O'Neill’s nomination.

Autism Research – The National Institutes of Health (NIH) and Centers for Medicare and Medicaid & Services (CMS) announced that NIH would be building a data platform that will aggregate existing data to study the root causes of autism. CMS and NIH will establish a data use agreement under CMS’ Research Data Disclosure Program focused on Medicare and Medicaid enrollees with an autism diagnosis.

Key Takeaways

• Disability advocates and Members of Congress alike have sounded the alarm about the changes that have begun to take place at HHS. Secretary Kennedy’s hearing will be an opportunity for some Members to highlight how problematic these changes are and press the Secretary to answer their questions about how HHS will continue to serve people with disabilities and older adults.
  
  

• President Trump’s nominees, including those nominated to lead key health agencies, have typically been confirmed by the U.S. Senate, which currently has a Republican majority. The nominees mentioned above are expected to be confirmed when their nominations are brought to the Senate floor. 
  
  

• Advocates continue to be concerned that the government is compiling data without the consent of the autistic individuals they plan on studying. This raises significant legal and ethical concerns as the government had previously said they would be culling private data from multiple sources and providing it to between “10 and 20 outside groups of researchers” and have made conflicting statements about establishing an autism registry that would compile private medical records from various databases. 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.
  
  Given Secretary Kennedy’s negative rhetoric around autism, this announcement is concerning. His focus on uncovering “the root causes of autism and other chronic disease” has been concerning; evidence has shown that autism is genetic, and Secretary Kennedy seems to think that there are environmental factors to be uncovered. His descriptions of increases in autism diagnoses as an “epidemic” to be cured are concerning, as they offer some insight into the reasons behind his interest in studying autism. 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. Unethical research practices do not help people with autism or their families—the autism community must be meaningfully involved in any research into autism.

Plain Language

The U.S. Department of Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. will come to Congress to meet with two different committees to discuss the proposed changes to HHS. Many people are upset about these changes because they could take resources and money away from programs that support people with disabilities and older adults.

Two parts of the Department of Health and Human Services—the Centers for Disease Control and Prevention and the National Institutes of Health—announced they would start studying the causes of autism. The President and the Secretary Kennedy have said and done things that show they are not supportive of autistic people. That is why this announcement is concerning. 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.

Georgia Considers Changing Medicaid Program

Georgia is considering changes to its Georgia Pathways to Coverage Section 1115 demonstration program. Currently, Georgia imposes work requirements for Medicaid enrollees. This new proposal would end monthly reporting requirements in exchange for reporting upon application and during annual renewal. The state is also proposing changes that include expanding qualifying activities to include caregiving for children under six who are covered by Medicaid and compliance with the state’s SNAP Able-Bodied Adults Without Dependents (AWAWD) program.

Key Takeaways

Georgia is the only state that currently imposes Medicaid work requirements. Georgia’s Pathways program—an alternative to Medicaid expansion—has been characterized by lackluster enrollment, burdensome administrative requirements for applicants and beneficiaries, technical hurdles, steep increases in administrative and overhead, and slower wait times to get coverage. It has cost taxpayers more than $86 million, with 90 percent of that money going towards administrative and overhead costs. Eighteen months after the program started, only 6,500 people had enrolled, which was 75 percent fewer than the state had projected for the program’s first year.

These proposed changes to the Pathways program may reflect Georgia’s attempts to mitigate the aforementioned negative consequences. As federal lawmakers consider implementing nationwide Medicaid work requirements in their reconciliation bill, Georgia’s Pathways program can serve as a potent warning that work requirements don’t actually work, but rather result in people losing health coverage and states paying millions for burdensome administrative systems and consultants, when they could be putting those funds towards ensuring people can access health care. The federal comment period for the changes to Pathways is open through June 1, 2025. 

Plain Language

Work requirements are when the government makes some people who get Medicaid report to the government how much they are working. Georgia has work requirements for its Medicaid program. Ever since they started making people report how much they are working, Georgia’s Medicaid program has had a lot of problems. Many people have not been able to get health care even if they should be able to, a lot of money has been spent on an expensive program that tracks who is working and who isn’t, and a lot of people have had a really hard time using the website because the technology has issues. Now, Georgia wants to make some changes to this program. Hopefully these changes will make it easier for people to get Medicaid who need it.

New Legislation

• The Bridge to Medicaid Act (H.R. 3257)

  • Introduced by Representatives Terri Sewell (D-AL) and Shomari C. Figures (D-AL)

  • Would provide a temporary health care option for people who live in states who haven’t expanded Medicaid, extending subsidies to people who are in the Medicaid coverage gap

  • You can read Rep. Sewell’s press release here.

Plain Language

The Bridge to Medicaid Act would help people who can’t afford regular insurance but make too much money to get Medicaid in many states.

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 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.

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.

Words to Know

Reconciliation

This is a process of passing bills that affect 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.

Testify

During a hearing—a meeting in Congress in a special group called a committee—lawmakers discuss topics of interest or proposed legislation or talk about what the federal or state government is doing. To testify means to be invited to a hearing and talk about an issue in front of lawmakers. Someone might be invited to testify because they are an expert on an issue or a person with lived experience. For example, Members of Congress might invite the person in charge of a government agency to testify about a plan or a rule from that government agency. They might also bring in a person with a disability who could talk about how they would be affected by things like bills, rules, and other things that the government does. Someone who testifies is called a witness.