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April 25, 2025 | Vol. MMXXVVVIV | Issue 109 |
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Reconciliation |
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House Republicans are slated to start marking up their reconciliation legislation next week. House committees that may be among the first to mark up the legislation include Judiciary, Homeland Security, and Armed Forces, because House Republicans want to start writing the parts of the bill that will increase funding for border security, defense, and immigration enforcement.
The House Energy and Commerce Committee, which is tasked with cutting $880 billion, could begin marking up its portion of the reconciliation bill as soon as the week of May 5. Speaker Mike Johnson (R-LA) wants to bring the bill to the floor for a vote by Memorial Day. |
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Key Takeaways |
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Congressional Republicans want to cut into safety net programs to extend the Trump tax package from his first term, which gave massive tax breaks to billionaires and corporations, and increased immigration enforcement. As Congressional Republicans plan to make cuts to Medicaid, 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.
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Plain Language |
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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 that both the Senate and the House of Representatives have passed their official plans to fund the government, they need to start telling Congressional committees what to do to pass the final 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. AUCD and other organizations will work to protect Medicaid.
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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 Autism Research |
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This past week, the National Institutes of Health (NIH) announced that it would be establishing a registry to track Americans with autism. NIH would compile private medical records from various databases to deliver on Secretary Kennedy’s promises to determine the cause of autism.
About the registry, NIH Director Jay Bhattacharya said: “Medication records from pharmacy chains, lab testing and genomics data from patients treated by the Department of Veterans Affairs and Indian Health Service, claims from private insurers and data from smartwatches and fitness trackers will all be linked together.”
On April 25, the U.S. Department of Health and Human Services (HHS) announced that they would not be establishing the registry. |
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Key Takeaways |
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Advocates continue to be concerned that the government might still compile this data without the consent of the 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.” Unethical research practices do not help people with autism or their families—the autism community must be meaningfully involved in any research into autism. |
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Plain Language |
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The National Institutes of Health, which is part of the U.S. 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 in the week, the National Institutes of Health said they were not going to make the list anymore. |
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Representatives Introduce Formal Inquiry into Administration for Community Living Dismantling |
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U.S. Representatives Suzanne Bonamici (D-OR) and Bobby Scott (D-VA) introduced a formal inquiry (H.Res. 344) into the dismantling of the Administration for Community Living (ACL) amidst the massive layoffs and restructuring of the U.S. Department of Health and Human Services (HHS). Representatives Bonamici and Scott are demanding more information from HHS Secretary Robert F. Kennedy, Jr. on these changes, including all communications from President Trump and Secretary Kennedy about eliminating ACL and “evidence of actions showing that laws governing ACL’s congressionally mandated work will still be followed.” This inquiry was referred to the House Committee on Education and the Workforce. |
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Key Takeaways |
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ACL was created to enable people with disabilities and older adults to choose where they want to live and to support them if they choose to live in the community. Dismantling it is a sign of the Administration’s ongoing assault against people with disabilities. Because agencies within ACL were authorized by law—including the Developmental Disabilities (DD) Act—its dismantling cannot run afoul of the authorizing statues that govern its mission. If Secretary Kennedy doesn’t respond to the inquiry within 14 days, there aren’t many options for the Representatives to enforce consequences. The Committee on Education and the Workforce could issue a subpoena to force Secretary Kennedy to bring forward certain documents or testimony, but they would have to get Committee Chairman Tim Walberg (R-MI) to issue that subpoena, which is unlikely, considering his public support of the Trump Administration. |
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Plain Language |
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The Administration for Community Living (ACL) is part of the U.S. Department of Health and Human Services. They do a lot of work that affects people with disabilities, including helping people live in the community and making sure people with disabilities can go to the doctor’s office and get healthcare just like nondisabled people. The Trump Administration decided to fire many people in the Department of Health and Human Services and close the Administration for Community Living. This is bad for people with disabilities because it will take away resources, make people in the Department stop working on their projects, and remove workers in the Department who are experts in helping people stay healthy and live in the community.
Representatives Suzanne Bonamici (D-OR) and Bobby Scott (D-VA) made a formal request for HHS Secretary Robert F. Kennedy, Jr. to give them information about how this decision was made. They are concerned that closing ACL is a big problem and they want to know how the Trump Administration is going to follow the laws about supporting people with disabilities without the ACL. |
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New Legislation
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Plain Language |
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There are a few new bills in the U.S. Congress.
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The Gabriel Rosenberg Dyspraxia/DCD Coverage Act would make the government study health insurance for people with dyspraxia, which is a disability that affects how people can move around.
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The Deafblind Disabled Americans Table Approximation (DATA) Act would make the government collect information on people who are both deaf and blind.
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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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The 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 on Medicaid. |
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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.
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. |
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