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May 29, 2026 | Vol. MMXXVI | Issue 163 |
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In this edition:
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Congress |
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Senate Appropriations Committee Hearing – On May 21, the Senate Appropriations Committee held a hearing in its Labor, Health and Human Services, Education, and Related Agencies Subcommittee on the National Institutes of Health (NIH) to review the President’s Fiscal Year 2027 budget request for the agency. The witnesses were:
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Dr. Jay Bhattacharya, NIH Director
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Dr. Griffin Rodgers, Director of the National Institute of Diabetes and Digestive Kidney Disease
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Dr. Anthony Letai, Director of the National Cancer Institute
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Dr. Nora Volkow, Director of the National Institute on Drug Abuse
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Dr. Richard Hodes, Director of the National Institute on Aging
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Dr. Joni Rutter, Director of the National Center for Advancing Translational Sciences
Senators questioned the witnesses about biomedical research, addiction and opioids, and investment in research institutions and facilities.
Key Takeaways
Senate Appropriations Chair Susan Collins (R-ME) was particularly upset about the President’s Budget request for NIH, which would cut funding for the agency by about $5 billion. Chair Collins has expressed her concern about the President’s proposed cap on indirect costs at research facilities, which Congress rejected last year. She said that “a cap would negatively affect cutting-edge research happening at universities, nonprofit laboratories, medical centers around the country.”
Subcommittee Ranking Member Tammy Baldwin (D-WI) contended that the Administration is anti-science and anti-vaccine. She and Committee Ranking Member Patty Murray (D-WA) questioned Director Bhattacharya specifically about how NIH has terminated over 5,000 grants, slashed nearly a quarter of workforce, and cut research grants by 22 percent.
Senator Baldwin also mentioned that HHS canceled $500 million for mRNA vaccine research, and redirected some of it to outdated vaccine technology and research being done by a “vaccine skeptic”. She alleged that Secretary Kennedy is pushing his own negative ideology about mRNA vaccines while dismantling infectious disease research.
House Ways and Means Committee Markup – On May 21, the House Ways and Means Committee marked up a few bills and passed them out of committee. One bill, the Protecting Seniors and Stopping Fraudsters Act (H.R.8883), would implement stricter oversight for hospice and home health agencies. It would implement increased survey frequency for newly enrolled hospices and home health agencies, providers with ownership changes, or providers displaying signs of fraudulent behavior. You can read more about the bill and markup here. |
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Plain Language |
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Senate Appropriations Committee Hearing – On May 21, the Senate Appropriations committee had a hearing, which is when Senators meet with people to publicly talk about a topic. This hearing was on the President's Budget request for the National Institutes of Health (NIH). The President writes a budget that they have to send to Congress every year. This 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 sent out some information on it. The budget shows they want to cut funding for a lot of things that NIH does, like research.
A part of the Senate Appropriations committee is the Labor, Health and Human Services, Education, and Related Agencies Subcommittee. This was the part of the committee that had the hearing. These were the people who met with the Subcommittee at the hearing:
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Dr. Jay Bhattacharya, NIH Director
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Dr. Griffin Rodgers, Director of the National Institute of Diabetes and Digestive Kidney Disease
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Dr. Anthony Letai, Director of the National Cancer Institute
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Dr. Nora Volkow, Director of the National Institute on Drug Abuse
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Dr. Richard Hodes, Director of the National Institute on Aging
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Dr. Joni Rutter, Director of the National Center for Advancing Translational Sciences
Senators asked these people about research, addiction, and money for universities and companies that do important research into health and diseases like cancer. Addiction is when you can't stop drinking, taking a drug, or doing something else that is bad for you.
Subcommittee Ranking Member Tammy Baldwin (D-Wisconsin), Committee Ranking Member Patty Murray (D-Washington), and Committee Chair Susan Collins (R-Maine) were upset that the President wanted to cut a lot of money from the NIH. They said that the money was really important to do research into diseases and help find cures to help people. Senators Baldwin and Murray talked about how the Administration had fired a lot of people from NIH, which makes it harder for NIH to do important work. They also said that the Administration canceled $500 million for mRNA vaccine research, even though that research could help a lot of people stay safe from diseases. mRNA vaccines are a kind of vaccines, which are shots that keep people safe from diseases.
House Ways and Means Committee – On May 21, the House Ways and Means Committee had a markup, which is a meeting where Members decide whether or not to make changes to bills and then vote to pass bills. During this markup, the Committee decided to pass the Protecting Seniors and Stopping Fraudsters Act (H.R.8883). This bill would create more rules to make sure that hospice and home health agencies are not committing fraud. Fraud is when you pretend to do something or be someone else in order to get money. Hospice care is for people who are going to die from a disease. Many Republicans in Congress and the Administration say that there is a lot of fraud in hospice and in home health. |
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Supreme Court IQ Case |
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The Supreme Court was slated to hear a case that hinged on whether or not a diagnosis of intellectual disability should be based on more than an IQ score. Last week, the Court dismissed the case in a 5-4 vote. The case, Hamm v. Smith, sought to determine if a person who was convicted of capital murder in Alabama has an intellectual disability. After he was convicted, Joseph Clifton Smith's death sentence was vacated by the U.S. District Court for the Southern District of Alabama because they concluded that he is intellectually disabled. Smith had taken five IQ tests, with scores no higher than 72. The state of Alabama says that because his scores were not lower than 70, he is still eligible for execution. Smith’s lawyers say that because his scores were low, he could still be considered intellectually disabled based on other evidence. Read more in this previous issue of DPN. |
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Key Takeaways |
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Writing for the majority opinion, Justice Sotomayor quoted an amicus brief filed by The Arc of the United States, the Bazelon Center for Mental Health Law, the National Disability Rights Network (NDRN), and the American Association on Intellectual and Developmental Disabilities (AAIDD) in affirming that intellectual disability is diagnosed with both quantitative and qualitative data, not just by a number like an IQ score. Justice Thomas dissented and said that the Eighth Amendment does not prohibit the execution of the people with intellectual disability. The dismissal of the case means that means that the lower court's decision that Mr. Smith is intellectually disabled will stand, and he will not be executed. |
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Plain Language |
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The Supreme Court is the highest court in the United States. They were going to look at a case to see if intellectual disability can be decided on an IQ score. An IQ score is a number that you get when you take a test to see how smart you are. Last week, the Court dismissed the case, which means they decided not to make an official decision on it.
In Alabama, a person with a low IQ score committed a murder. Some people say that this low IQ score is not low enough to say that the person has an intellectual disability. Alabama law says that the government can legally kill someone who commits certain crimes, such as murder. The murderer’s lawyers say that he has an IQ score that is low enough to say that he has an intellectual disability. They say that because he has an intellectual disability, he should not be killed. The Supreme Court was going to decide whether or not IQ can be the only way to prove someone has an intellectual disability or not. Some disability organizations say there are many other ways to prove someone has an intellectual disability or not.
Justice Sotomayor wrote about her decision to dismiss the case. She said that intellectual disability is decided through many different ways. She said that it can't be diagnosed with just one number, like having an IQ score. Justice Thomas disagreed, and said that the Eighth Amendment of the U.S. Constitution said that the justice system can kill a criminal with an intellectual disability. Because the Supreme Court dismissed the case, the official decision on the case is from a different court that said that this person will not be killed. |
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Department of Health and Human Services |
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Medicaid State-Directed Payments NPRM – The Centers for Medicare and Medicaid Services (CMS) has a new Notice of Proposed Rulemaking (NPRM) changing Medicaid Managed Care State Directed Payments (SDP). This rule would change SDP policy by bringing Medicaid reimbursement rates closer to Medicare rates in states. There is a 60 day comment period for this NPRM.
States pay Medicaid managed care organizations (MCOs), which oversee Medicaid services administered by qualified providers. States pay a fixed amount for MCOs to administer these benefits, regardless of how many services a person uses. When the rate of reimbursement for these services (the provider rate) is low, fewer providers participate in Medicaid, leading to limited care options and longer wait times for people to receive services. In order to address this, CMS has allowed states to use state-directed payments. SDPs allow states to require MCOs to pay certain providers more to improve care and expand provider options. Under SDPs, states can set minimum or maximum provider rates for certain services. States can also require MCOs to use certain payment systems, such as pay-for-performance programs.
The new proposed rule follows the new provisions in H.R.1 (the One Big Beautiful Bill Act), which passed in July 2025. The rule would cap SDP provider payment rates at 100% of Medicare payment rates for states that expanded Medicaid under the Affordable Care Act. It would cap SDP provider payment rates at 110% of Medicare payment rates for states that did not expand Medicaid. CMS has a factsheet on the proposed rule.
Key Takeaways
This new rule also goes beyond the mandated changes from H.R.1 and proposes limits to certain Medicaid fee-for-service payments, not just MCO rates. Advocates are concerned that the NPRM would restrict SDPs more than H.R.1 dictates, which mean lower provider rates across the country and fewer providers participating in Medicaid, leading to limited care options and longer wait times for people to receive services.
Medicaid Fraud – The Department of Justice arrested and indicted 15 people in Minnesota for $90 million in Medicaid fraud in what HHS Secretary Kennedy called “the largest autism fraud bust in American history”. The defendants are charged with fraudulently billing for autism services that were never provided. At a press conference, CMS Administrator Dr. Oz, HHS Secretary Kennedy, and Assistant Attorney General Colin McDonald announced the charges, and Assistant AG McDonald said that “said that a man was supposed to receive around-the-clock care, but instead was not served at all and died.” During the press conference, speakers said the defendants were “accused of paying kickbacks to parents who brought their children to autism centers where the children were diagnosed with the neurological condition, ‘regardless of medical necessity,’ and then billed for autism services that were never provided.” They also said that Minnesota Governor Tim Walz was not doing enough to prevent and root out fraud in the state. Minnesota has agreed to revalidate health providers that provide services like home care—and other services the Administration deems at high risk of fraud—by May 31.
Key Takeaways
The Administration has found previous instances of Medicaid fraud in Minnesota and subsequently withheld multiple tranches of Medicaid funding to the state this year. Advocates are concerned that the Administration’s choice to withhold funds—in California as well as Minnesota—will end up negatively affecting people who need Medicaid services. Because states beyond Minnesota are also being asked by the Administration to revalidate providers, there is broad concern that states’ federal Medicaid funding could be impacted by their engagement in these anti-fraud efforts.
Sec. Kennedy and Gavi – Gavi, the international vaccine relief group, offered to phase out vaccines using thimerosal to try and get the U.S. to release funding it was withholding from the organization. Senator Jeanne Shaheen (D-NH) has been trying to broker a deal to get the State Department to release that funding, and said that if Gavi doesn’t get the $600 million that Congress approved to send for FY25 and FY26, “we would see a resurgence of deadly infectious diseases that would make Americans and the world less safe.”
Key Takeaways
HHS Secretary Kennedy has made reshaping vaccine policy a pillar of his policy priorities since he began his tenure at HHS. He believes that thimerosal likely causes autism and is unsafe, despite consensus from the medical community that it is safe and does not cause autism. In addition to Senator Shaheen’s efforts, there has been bipartisan pushback to the Secretary’s stance on Gavi, led by Senate Appropriations Chair Susan Collins (R-ME) and Ranking Member Patty Murray (D-WA). Earlier this month, Senators Mitch McConnell (R-KY) and Lisa Murkowski (R-AK) joined Senators Collins and Murray in sending a letter to Secretary of State Marco Rubio asking why the State Department has not sent out the $600 million that Congress approved to send to Gavi in FY25 and FY26. |
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Plain Language |
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Medicaid State-Directed Payments – Medicaid state-directed payments (SDPs) are a way for states to decide how much money healthcare providers will get for giving healthcare services to people with Medicaid. The Centers for Medicare and Medicaid Services (CMS) has a new rule they want to make that would change SDPs and lower the amount that these healthcare providers can get so the amount is similar to what they would get for Medicare services. People have 60 days to comment on the rule and tell CMS what they think about it. It is not an official rule yet.
The new proposed rule follows some of the parts of H.R.1 (the One Big Beautiful Bill Act), which passed in July 2025. It also adds some new parts that disability advocates were not expecting. They say that lowering these payments could mean fewer healthcare providers giving healthcare services through Medicaid. This could mean it might be harder for people to get healthcare they need.
Medicaid Fraud – Fraud is when someone pretends to be someone or does something so they can get money. The Administration found 15 people who committed Medicaid fraud in Minnesota. They said they were providing services for people with autism and for people who needed home care but they were not. The President and his Administration have talked a lot about how they think there is a lot of fraud in Medicaid. Many Republican Members of Congress have talked about this too. Advocates are worried that the Administration is using fraud as an excuse to take Medicaid away from people and spend less on it. The Administration cut off millions of Medicaid dollars to Minnesota earlier this year when they found examples of fraud there, so people are worried that the Administration will do the same thing to other states. Now, Minnesota has to prove that other people who provide these services–including home care–are not committing fraud.
Sec. Kennedy and Gavi – Gavi is an organization that is made up of a lot of different countries. It helps children get vaccines all around the world. Vaccines are shots with medicine that keep from getting sick. Congress decided to give Gavi $600 million for 2025 and 2026, but the Administration is not giving Gavi that money even though they are supposed to. Now, Gavi is saying they will get rid of their vaccines that have thimerosal in them to try and get the U.S. to give them the money. A few months ago, Secretary Kennedy said the U.S. would start giving money to Gavi again if they stop using vaccines with thimerosal in them. Thimerosal helps vaccines stay effective for a long time so they will still work even after they have been stored in pharmacies, doctor’s offices, and hospitals for a while. Even though there isn’t evidence that proves it, Secretary Kennedy says that thimerosal in vaccines has harmed many people and hurt brain development in children. He says that more people have autism because they got flu shots with thimerosal in them. This isn’t true. Vaccines do not cause autism. People might not get vaccines if they are scared vaccines will make them disabled. If people don’t get vaccines, they are more likely to get sick from diseases.
Senator Jeanne Shaheen (D-New Hampshire) has been working to get the U.S. to give the money to Gavi. Without vaccines, many diseases could spread could spread around the world. Earlier this month, Senate Appropriations Chair Susan Collins (R-Maine) and Ranking Member Patty Murray (D-Washington) wrote a letter to the State Department, which is in charge of Gavi money. Senators Mitch McConnell (R-Kentucky) and Lisa Murkowski (R-Alaska) joined Senators Collins and Murray in sending this letter. In the letter, the Senators ask Secretary of State Marco Rubio why he hasn't sent Gavi the money yet. They tell him to send it soon. It's important that both Republicans and Democrats care about this issue, especially Senators Collins and McConnell, who are both high up in the Republican party, and Republicans are in charge of Congress right now. |
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New Legislation
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Plain Language |
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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 Lillian Olsen: The Federal Tax Credit Scholarship Program and Its Threat to Students with Disabilities |
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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 the President's Budget. |
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Words to Know |
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Fraud
Fraud is when someone pretends to be someone or does something so they can get money.
Thimerosal
Thimerosal helps vaccines stay effective for a long time so they will still work even after they have been stored in pharmacies, doctor’s offices, and hospitals for a while.
Gavi
Gavi is an organization that is made up of a lot of different countries. It helps children get vaccines all around the world |
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