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May 16, 2025 | Vol. MMXXV | Issue 112 |
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Reconciliation |
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On Wednesday, the House Energy and Commerce Committee advanced their reconciliation bill after almost 27 hours of debate and votes on many amendments. The Congressional Budget Office has scored that the bill’s Medicaid provisions could lead to 7.6 million people going uninsured. The legislation would:
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Implement work requirements for “able-bodied adults” ages 19-64
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Freeze state provider taxes at their current rates and prohibit them from establishing any new taxes
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Repeal the Medicaid Enrollment and Eligibility Rules
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Make pharmacy benefit manager reforms
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Allow states to charge low-income Americans up to $35 per healthcare service
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Cut Medicaid funds for states that use their own state dollars to provide health insurance coverage to undocumented immigrants
This morning, House Republican leadership in the Budget Committee began to bundle the pieces of their reconciliation package into one bill. They did not finish deliberation on the bill after some more conservative Members of the Republican caucus had objections to the bill, saying it didn’t go far enough to make budget cuts. After they get the bill through the Budget Committee, leadership plans to hold a floor vote for the full bill next week.
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Key Takeaways |
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The Congressional Budget Office has scored that limiting or eliminating provider taxes would leave 3.9 million people without coverage, repealing the Medicaid Eligibility and Enrollment rules would leave 600,000 people without coverage, and implementing work requirements could leave 2.5 million uninsured. The bill would disqualify people from getting “health insurance at lower costs through the Affordable Care Act marketplace if they otherwise qualified to receive Medicaid but failed to meet new work requirements.”
Congressional Republicans want to make these cuts to finance two main things:
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An extension of the Trump tax package from his first term—which gave massive tax breaks to billionaires and corporations
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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. They are also split within their caucus on whether to start the work requirements in 2029 or earlier.
Congressional Republicans have been saying that the bill will not take health care away from people with disabilities and other “deserving” beneficiaries. However, previous models of work requirements (in Georgia and Arkansas) resulted in many people with disabilities and older adults losing health care coverage, despite their eligibility, and did not boost employment. Additionally, decreasing federal funding for Medicaid will leave states with less money to spend on all Medicaid services, putting optional services like home and community-based services in jeopardy.
There are Republican Members 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 Members 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. Continue to reach out to your Members of Congress to educate on the negative effects of these cuts to Medicaid—you can use 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.
Read Top 10 Reasons Why House Republicans’ Reconciliation Bill is Bad for Medicaid (and the ACA) from the National Health Law Program here.
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Plain Language |
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Congress is in the middle of a long process of passing bills that affect how the government spends money, which is called reconciliation. Committees are groups of lawmakers who work on a particular issue, like health care or farming. The Energy and Commerce Committee is in charge of the part of the reconciliation bill about Medicaid. This Committee passed a bill that would take money away from Medicaid. Next, it will need to be voted on in a different committee. If this bill becomes a law, it will take Medicaid away from millions of people and even make it harder for people to get health insurance in other ways. Republicans are in charge of this reconciliation process, and 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.
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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.
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U.S. Department of Health and Human Services |
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Secretary Kennedy Hearings – On Wednesday, U.S. Department of Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. testified in front of the House Appropriations Labor, Health and Human Services, Education, and Related Agencies Subcommittee at 9:30 AM and the Senate Health, Education, Labor, and Pensions (HELP) Committee at 1:30 PM on the President’s fiscal year 2026 budget for HHS.
New Strategy from CMS – The Center for Medicare and Medicaid Innovation (CMMI) within the Centers for Medicare & Medicaid Services (CMS) announced a new strategy for promoting preventive care and addressing chronic diseases. CMMI tests alternatives to the model it uses to pay Medicare and Medicaid providers. The announcement says that CMMI’s strategy hinges on “evidence-based prevention” and promotion of “choice and competition for people.” The strategy strongly emphasizes the importance of prevention to improve health outcomes and reduce costs to the health system. It would implement pilot programs to test payment models that reward prevention and health promotion services like providers promoting nutrition guidance and physical activity, as well as screenings for diseases. |
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Key Takeaways |
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In his hearings this week, Secretary Kennedy was again unfamiliar with the structure of his own agency, the extent of the mass firings that had taken place since his tenure began, and the consequences of the significant cuts to personnel and funding. You can read AUCD’s statement on the hearings here.
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In his remarks and his answers to Members’ questions, Secretary Kennedy continued using stigmatizing, harmful language to describe autism and autistic people. This past week, AUCD and seven other national organizations invited Secretary Kennedy to a roundtable to hear directly from autistic self-advocates, parents, caregivers, researchers, and service providers to discuss the urgent needs faced by our community and chart a united path forward. Secretary Kennedy did not respond to the request to attend; Mary Lazare, Principal Deputy Administrator at the Administration for Community Living, was in attendance. Read the joint statement from AUCD and the other organizations about the roundtable and the hearings here.
This announcement from CMMI is in line with the goals that the Administration has established to address chronic disease and reduce health care costs. |
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Plain Language |
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Secretary Kennedy is in charge of the Department of Health and Human Services. The Administration wrote a budget that shows they want to make billions in cuts to this department. They want to take money away from many government programs that support people with disabilities and their families, and have already started firing a lot of people and stopping a lot of money from going to important programs. Secretary Kennedy met with a committee in the House of Representatives and a committee in the Senate to talk about this budget. Members of Congress asked him about these firings and about the money that is being stopped from going to important programs that affect people with disabilities, children, older adults, and more. Secretary Kennedy showed that he did not know a lot about the firings or the money.
Secretary Kennedy said things about autistic people that are disrespectful and not true. He defended a person he hired who has done dangerous experiments on autistic children and said that autistic people could be cured. Autistic people do not need to be cured, they should be supported and listened to. 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. |
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Illinois Executive Order Pushing Back on Autism Registry |
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This week, Illinois Governor JB Pritzker signed an executive order to block the federal government from collecting personal data on autism. Last month, the National Institutes of Health (NIH) announced that it would be establishing a registry to track Americans with autism and then shortly afterwards walked it back, announcing that they would not be establishing 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. |
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Key Takeaways |
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In the midst of HHS Secretary Kennedy’s and President Trump’s disparaging remarks towards autistic people and opaque federal policy about the autism registry, Governor Pritzker’s directive is a positive sign that states can take action to push back. Autistic people and disability advocates have been concerned that the government is compiling data without the consent of the autistic individuals they plan on studying, which raises significant legal and ethical concerns. |
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Plain Language |
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The Department of Health and Human Services 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 National Institutes of Health said they were not going to make the list anymore. The Governor of Illinois made an official order, called an Executive Order, that he would not let the federal government take this private information from people in Illinois. This shows that he cares about autistic people keeping their information private, because it is their choice to share it or not. |
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New Legislation
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Plain Language |
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The Websites and Software Applications Accessibility Act would help make sure more websites are accessible for people with disabilities
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The Strengthening Medicaid for Serious Mental Illness Act would get more money to Medicaid services that help people who have mental illnesses get the help they need.
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AUCD Story Collection |
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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:
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Medicaid and its impact on people's lives
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The impact of dismantling ACL
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The impact of zeroing out UCEDDs, LENDs, IDDRCs, PNS’s, DD Councils, P&As
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Impact of grants that are being cut
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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. |
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AUCD Policy Blog |
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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. |
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Disability Policy for All with Liz |
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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 Bridger Reed-Lewis on autism. |
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Words to Know |
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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.
Work Requirements
Work requirements are a part of the law that makes people fill out a form or prove to their government that they are working at a job for a certain number of hours every month in order to get services. These services might be Medicaid, SNAP (which helps people afford food), or other services that the government is in charge of. Sometimes, work requirements can include things like volunteering or going to school, if you can prove that you can’t get a job. Work requirements can be very hard for the government to check, because it takes a lot of people and a lot of time to check if people are reporting their work. Sometimes people think that work requirements get more people to have jobs, but in the examples we have seen, it doesn’t really help people get jobs.
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.
Chronic
When something is chronic, that means it is ongoing. It usually doesn’t go away, but people have it for a long time. Diabetes is an example of a chronic disability. |
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