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May 22, 2026 | Vol. MMXXVI | Issue 162 |
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In this edition:
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Appropriations and Budget |
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Appropriators have begun drafting legislation to fund various federal agencies, as well as holding markups and hearings to consider the President’s Budget for Fiscal Year 2027. The House Labor, Health and Human Services, Education, and Related Agencies Bill—which funds AUCD programs—is going to be marked up on June 5 by the LHHS subcommittee and on June 11 for the full Appropriations Committee.
Additionally, Congressional Republicans are moving forward with their second party-line budget reconciliation bill this Congress. This bill would fund the immigration enforcement agencies in the Department of Homeland Security (DHS). It previously included Secret Service upgrades related to the President’s White House ballroom project, but that part was removed when the Senate parliamentarian ruled that Republicans could not include it in the legislation, per Senate rules. Several Republican Senators have also voiced opposition to spending taxpayer dollars to build the proposed White House ballroom. President Trump subsequently demanded that Senate Republicans fire the parliamentarian.
On Wednesday, the Senate Budget Committee voted the reconciliation bill out of committee. On Thursday night, Senate Republican leadership canceled a vote on the bill because they couldn’t come to an agreement on a particular provision. The Senate is now in recess until June 1, which President Trump has set as a deadline for the bill to pass. |
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Plain Language |
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Appropriations means money that is set aside by Congress for a particular use.
Congress is starting to write and pass appropriations bills for different federal government departments and programs. They are having budget hearings, where they meet with agency leaders who talk about the President's Budget. The Department of Health and Human Services (HHS) is in charge of funding and other support that AUCD programs get. Congress will also hold markups, which is when they meet to work on bills and make updates and changes. The House Labor, Health and Human Services, Education, and Related Agencies Bill—which funds AUCD programs—is going to be marked up on June 5 by the subcommittee (a smaller group that just focuses on Labor, Health and Human Services, and Education) and on June 11 for the full Appropriations Committee.
Congressional Republicans want to pass a bill to give money to the part of the Department of Homeland Security that includes immigration police: Immigration and Customs Enforcement (ICE) and Customs and Border Protection (CBP). They are using a special process called reconciliation. This process can be used for bills that are about spending money. It can be used when the same political party (Republicans or Democrats) are in charge of the Senate, the House, and the Presidency. 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.
This reconciliation bill was also going to include money for some safety and security work at the White House, including making some change to the ballroom, which is one of the fancier event rooms. However, the Senate Parliamentarian, who tells Senators about what the rules are, said that the part about the ballroom was against Senate rules. Some Republicans also didn't want that part in the bill as well. The Senate was going to vote on the bill, but they couldn't agree on a different part. The Senate is in recess (working in their states instead of D.C.) until June 1. The President wants this bill passed by June 1. He also wants the Senate to fire the Senate Parliamentarian. |
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Congress |
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Long-Term Care Initiative – On May 20, Senate Finance Committee Ranking Member Ron Wyden (D-OR) and 16 Senate Democrats announced a new initiative to improve long-term care services for people with disabilities, older adults, and their families. The Senators sent a letter to Senate colleagues detailing the plan's goals: to make home care affordable and accessible, improve the quality of care in nursing homes, and strengthen the long-term care workforce. The Senators write that the cost of care threatens families’ savings and financial stability, and the looming changes to Medicaid via H.R.1 will exacerbate that financial burden. They propose expanding access to home care, improving wages and benefits for home care workers, creating training incentives to address care workforce shortages, and protecting family caregivers, among other policies.
The Senators also propose policies to improve quality of care in nursing homes, including addressing nursing home staffing shortages and improving transparency and oversight over facilities. They point to private equity companies driving up costs while care worsens.
In addition to Senator Wyden, Senate Aging Committee Ranking Member Kirsten Gillibrand (D-NY) and Senators Ben Ray Luján (D-NM), Tammy Duckworth (D-IL), Angela Alsobrooks (D-MD), Tim Kaine (D-VA), Angus King (I-ME), Andy Kim (D-NJ), Richard Blumenthal (D-CT), Cory Booker (D-NJ), Elizabeth Warren (D-MA), Mazie Hirono (D-HI), Chris Murphy (D-CT), Jeanne Shaheen (D-NH), Sheldon Whitehouse (D-RI), Lisa Blunt Rochester (D-DE), and Jeff Merkley (D-OR) signed the letter.
Key Takeaways
The Senators plan to release more details about the policies in this plan in the coming weeks. Disability and aging advocates have been pushing for these policies for a long time, so this is an exciting and positive announcement.
The Finance Committee’s Democratic staff will host office hours starting June 2 through July 29 for initial feedback on the plan, focusing on the long-term care policies. Office hours will be held on Tuesdays from 3:00 – 4:00 PM ET and Wednesdays from 1:00 – 4:00 PM ET. Please schedule a time to meet at this link: https://zcal.co/lexishimanovsky/30min. Given the anticipated volume of requests, it is preferred that you use this link (rather than emailing staff individually) for all scheduling related to the letter. You can also reach out to Homecare@finance.senate.gov with any questions in the meantime.
HELP Chair Cassidy – Senate Health, Education, Labor, and Pensions (HELP) Committee Chair Bill Cassidy (R-LA) lost his primary race this past week, meaning his re-election campaign has ended. He will not be returning to Congress next session.
Key Takeaways
Senator Cassidy has been consistently pushing back on HHS Secretary Kennedy’s misinformation regarding vaccines, which is unique in the Republican caucus right now. Julia Letlow, who won the Louisiana primary, has been supportive of Secretary Kennedy and the MAHA movement. There is reporting that Senator Roger Marshall (R-KS) is interested in HELP Committee leadership; Senator Marshall has been one of Sec. Kennedy’s allies in Congress, supporting many of the Secretary’s anti-vaccine policies. |
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Plain Language |
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Long-Term Care Plan from Senators – On May 20, Senate Finance Committee Ranking Member Ron Wyden (D-Oregon) and 16 other Senate Democrats announced a new plan to improve long-term care services like home care and nursing home care. They sent a letter to the other Senators with details about their plan and why it is so important to make sure that people with disabilities, older adults, and their families can afford care. The Senators wrote about how H.R.1 (the One Big Beautiful Bill) that was passed last year will make care more expensive, because it makes cuts to Medicaid. They say that the government should help home care workers make more money and have better benefits–such as health care–and get more people to train to be home care workers.
The Senators also write about how nursing homes need to have better care, including more staff. They say that certain companies that own nursing homes are making nursing home care more expensive and not investing in good healthcare.
The other Senators who signed the letter are Senate Aging Committee Ranking Member Kirsten Gillibrand (D-New York) and Senators Ben Ray Luján (D-New Mexico), Tammy Duckworth (D-Illinois), Angela Alsobrooks (D-Maryland), Tim Kaine (D-Virginia), Angus King (I-Maine), Andy Kim (D-New Jersey), Richard Blumenthal (D-Connecticut), Cory Booker (D-New Jersey), Elizabeth Warren (D-Massachusetts), Mazie Hirono (D-Hawaii), Chris Murphy (D-Connecticut), Jeanne Shaheen (D-New Hampshire), Sheldon Whitehouse (D-Rhode Island), Lisa Blunt Rochester (D-Delaware), and Jeff Merkley (D-Oregon) signed the letter.
The Finance Committee's Democratic staff will have office hours for people to say what they think about the plan starting June 2 through July 29, focusing on the long-term care policies. Office hours will be held on Tuesdays from 3:00 – 4:00 PM ET and Wednesdays from 1:00 – 4:00 PM ET. You can find a time to meet at this link: https://zcal.co/lexishimanovsky/30min.
HELP Chair Cassidy – Senate Health, Education, Labor, and Pensions (HELP) Committee Chair Bill Cassidy (R-Louisiana) was running for reelection. Reelection is when you need to run for office again. First, he had to run against another Republican to see who would be in the final election against a Democrat. Senator Cassidy lost his race against the other Republican, so he is finished with his campaign. He will not be coming back to Congress next session.
Senator Cassidy has been one of only a few Republicans in Congress who has disagreed with HHS Secretary Kennedy. He has talked about how Secretary Kennedy is saying incorrect information about vaccines. Some other Senators might want to be in charge of the HELP Committee, like Senator Roger Marshall (R-Kansas), who agrees with Secretary Kennedy about vaccines. |
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Department of Health and Human Services |
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Administration for Community Living (ACL) – ACL is launching Phase 1 of its Cultivating Connected Communities Challenge, which engages community garden organizers to expand inclusive and sustainable practices to improve healthy eating and wellness and reduce social isolation with focused outreach to people with disabilities and older adults.
Surgeon General – HHS Secretary Robert F. Kennedy, Jr. has chosen Stephanie Haridopolos to take on the responsibilities of the surgeon general while the President’s new pick goes through the confirmation process. Stephanie Haridopolos is a federal health official who works in the surgeon general’s office.
U.S. Preventive Services Task Force – Secretary Kennedy has fired the two leaders of the USPSTF, a group of experts that decide what medical services are preventive and must be covered by insurers. Nominations for the panel are due by May 23.
In March, HHS postponed a meeting of the USPSTF. In April, Secretary Kennedy announced that he was beginning to search for new members to serve on the panel. Last year, HHS canceled two meetings (out of three scheduled meetings total for the year), preventing the group from making any final recommendations for preventive services. It was previously reported that Secretary Kennedy intended to remove all 16 members of the panel “because he viewed them as too ‘woke.’” The Secretary alleged that the USPSTF has been negligent and corrupt. One of the USPSTF’s draft recommendations was about autism screening in children, among others. |
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Plain Language |
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Administration for Community Living (ACL) – ACL is starting the first part of its Cultivating Connected Communities Challenge. This is a program where ACL is giving money to local groups that are working on community gardens. The goal is to include people with disabilities and older adults so that they can eat healthy food from the gardens and be together.
Surgeon General – HHS Secretary Kennedy chose Stephanie Haridopolos to be the Surgeon General for a short period of time. She will not be the official Surgeon General, because President Trump chose someone else to do that. While that person goes through the process to become the official Surgeon General, Stephanie Haridopolos will do that work. The Surgeon General is in charge of telling Americans how to stay healthy.
U.S. Preventive Services Task Force – Secretary Kennedy fired the two leaders of the USPSTF, which is a group of experts who meet to make recommendations about preventive healthcare (how to stop people from getting sick). The Secretary is supposed to choose people to be on the panel by May 23.
HHS was supposed to have USPSTF meet in March, but they delayed the meeting. Last year, HHS canceled two meetings (out of three scheduled meetings total for the year). A news article says that Secretary Kennedy wanted to get rid of all 16 members of the group because he didn't agree with their beliefs. He hasn't removed them yet. One of the things that USPSTF was working on was making recommendations about autism screening (checking to see if someone has autism) in children.
Secretary Kennedy said in April that he was beginning to search for new members to serve on the USPSTF. This panel makes recommendations for what care services health insurance companies have to cover for free under the Affordable Care Act. The Secretary has said that the USPSTF hasn’t done enough. Considering the Secretary’s changes to other groups at HHS, some people are worried that he will add people to USPSTF who will say things about healthcare and disability that aren’t true. |
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New Legislation
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The KIDS Act (S.4590)
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Introduced by Senator Michael Bennet (D-CO)
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Would prohibit the Department of Homeland Security from detaining children, individuals with cognitive disabilities, or their primary caregivers
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You can read Senator Bennet’s press release here.
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Removing Barriers to Work for Disabled Americans Act (H.R.8884)
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The Planning for Long-term Aging Needs (PLAN) Act (H.R.8867)
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Introduced by Representative Thomas Suozzi (D-NY)
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Would create a public education campaign with the Department of Health and Human Services to educate families about planning for long term care
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You can read Rep. Suozzi’s press release here.
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The Reproductive Health Care Accessibility Act (H.R.8829) (S.4540)
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Introduced by Representative Ayanna Pressley (D-MA) and Senator Patty Murray (D-WA)
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Would help women with disabilities get better access to timely, informed, and culturally competent reproductive health care
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You can read Rep. Pressley’s press release here and Senator Murray’s press release here.
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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 KIDS Act would make changes to how the Department of Homeland Security arrests people. It would stop DHS from arresting children, people with intellectual or developmental disabilities, or their caregivers.
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The Removing Barriers to Work for Disabled Americans Act would update some projects under some disability insurance programs so they can keep going.
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The Planning for Long-term Aging Needs (PLAN) Act would create a public education plan to make sure families know about their options for long term care.
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The Reproductive Health Care Accessibility Act would help women with disabilities get better access to reproductive healthcare, which is healthcare that has to do with the parts of people that are involved in having kids.
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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 important work of UCEDDs, LENDs, IDDRCs, PNS’s, DD Councils, P&As
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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.
Read our newest blog from Cobey Meyer on his IPSE experience. |
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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 recent video on the President's Budget. |
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Words to Know |
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Appropriations
Appropriations means money that is set aside by Congress for a particular use.
Reconciliation
This process can be used for bills that are about spending money. It can be used when the same political party (Republicans or Democrats) are in charge of the Senate, the House, and the Presidency. 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.
Senate Parliamentarian
The Parliamentarian is in charge of telling Senators what the rules are in the Senate when it comes to passing legislation.
Reelection
Reelection is when you need to run for office again. |
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