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January 9, 2026 | Vol. MMXXVI | Issue 143 |
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In this edition:
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Appropriations & Healthcare
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Department of Health and Human Services
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GAO Report on Healthcare Accessibility
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ABLE Accounts
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Representative Steny Hoyer to Retire
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New Legislation
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AUCD Materials
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Words to Know
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Appropriations & Healthcare |
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The current continuing resolution (CR) expires at the end of January, which makes passing a new CR or full-year funding bill a time-sensitive priority in Congress. Senate and House leaders are working on a few funding bills. AUCD Network programs and other programs affecting people with disabilities will be covered under the Labor-Health and Human Services-Education (LHHS) bill, which looks like it will be last on the docket, along with the Defense funding bill. On Thursday, the House passed three government spending bills to fund the Departments of Energy, Commerce, Interior, and Justice, as well as an Energy-Water bill.
Meanwhile, there is still some interest in extending the Affordable Care Act (ACA) tax credits, even after they expired at the end of 2025 and sent premiums skyrocketing this month. On Thursday, the House passed a bill extending the subsidies for three years with 17 Republican Representatives voting for the bill. There are not enough votes in the Senate to pass the bill, but Senator Bernie Moreno (R-OH) and a few other Senators are working on their own deal to extend the tax credits. |
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Plain Language |
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At the end of last year, Congress passed a continuing resolution (also called a CR), which is a funding bill that makes sure the government has enough money for a few more months. This CR will fund the government until the end of January, so Congress needs to figure out how they will fund the government after that. This process is called "appropriations." Appropriations means money that is set aside by Congress for a particular use. Senate and House leaders are working on a few funding bills. On Thursday, the House passed a few bills. These bills would give money to programs under these Departments:
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Department of Energy (deals with things like fuel and gas or electricity)
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Department of Commerce (works on job creation and oversees trade)
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Department of the Interior (manages public land and protects nature)
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Department of Justice (makes sure the law is being followed)
The bills also give money to water programs and some science programs in the federal government. AUCD programs and other disability programs are going to be in different bills, which are called Labor-Health and Human Services-Education bills. Those will come later.
Many people are able to pay less for healthcare every month because of something called "tax credits." A tax credit is an amount of money that people can save when they file their taxes. Usually, they are a reward from the federal government. For example, if the federal government wants more people to get health insurance, they might offer a tax credit to people who get health insurance. The Affordable Care Act has special tax credits that ended on December 31, 2025. Democrats want to make sure that people can still use these tax credits in the future so they can save money and afford healthcare. Some Republicans also want people to be able to keep using the tax credits. Some Republicans and Democrats have different bills that would extend the tax credits for a while longer.
These Affordable Care Act tax credits expired, so a lot of people can't use them anymore. Because of that, a lot of people are paying much more money for their healthcare now. However, there are some Members of Congress who want to pass a bill to let people use the tax credits again. A bill passed in the House to extend the tax credits for three more years. It probably won't pass in the Senate, but there are some Senators working on their own version of a bill. |
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Department of Health and Human Services |
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Centers for Disease Control and Prevention (CDC) – Acting CDC Director Jim O’Neill signed off on recommendations to change the childhood vaccine schedule, easing guidance for the rotavirus, meningococcal disease, hepatitis A, respiratory syncytial virus (RSV), and flu vaccines. Directors of the National Institutes of Health (NIH), Food and Drug Administration, and Centers for Medicare and Medicaid Services (CMS) sent a memo to Acting Director O’Neill, recommending that the vaccines be moved from a universal recommendation to a category called “shared decision-making.” This means that families should consult a doctor to decide whether or not to get their child vaccinated for those diseases. The vaccines will still be required to be covered by insurance.
Centers for Medicare and Medicaid Services (CMS) – CMS is removing the requirements for states to report pediatric vaccination data. States have to report data on Medicaid and Children’s Health Insurance Program (CHIP) care delivered, including prenatal and pediatric immunization data. Now, CMS is removing the immunization data portion of what states have to report to CMS.
Health Resources and Services Administration (HRSA) – On December 29, the Advisory Commission on Childhood Vaccines (ACCV) met to review the Vaccine Injury Compensation Program (VICP). The ACCV reviews issues relating to the VICP, is required to meet four times a year, and makes recommendations to the HHS Secretary. This was the only meeting in 2025, and it did not result in any policy changes. |
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Key Takeaways |
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Secretary Kennedy has made reshaping vaccine policy a pillar of his policy priorities since he began his tenure at the Department of Health and Human Services (HHS). Weakening vaccine guidance for these diseases is very concerning, and public health experts are sounding the alarm—especially for the potentially deadly effects of weakening flu vaccine guidance. The U.S. recorded 289 child deaths from flu last year. This marked the deadliest flu season since the country began recording pediatric deaths.
Previously, President Trump released a memo directing HHS and CDC to make changes to the childhood vaccine schedule to more closely mirror countries that recommend fewer vaccines for children. Public health experts warn that these nations are smaller and typically provide universal health care, making the U.S. an incompatible comparison.
The CDC vaccine updates “were made without formal public comment or input from vaccine makers, officials confirmed,” which is different than the usual process that the federal government uses to change the vaccine schedule. Typically, the Advisory Committee on Immunization Practices weighs in and makes recommendations.
On Monday, Senator Bill Cassidy (R-LA), Chair of the Senate Health, Education, Labor, and Pensions (HELP) Committee, posted on social media seemingly weighing in on these changes. He said that the vaccine schedule is not a mandate, but a recommendation, and that “[c]hanging the pediatric vaccine schedule based on no scientific input on safety risks and little transparency will cause unnecessary fear for patients and doctors, and will make America sicker.”
These new recommendations may be confusing for people who want to get vaccinated and for pharmacies who provide the vaccines. Shifting guidelines and a previous weaker endorsement of COVID vaccines could result in fewer adults getting a vaccine, which could disproportionately affect people with disabilities—especially people who are immunocompromised or use assistive technology to help them breathe. |
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Plain Language |
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Vaccines are shots that keep people from getting diseases.
Centers for Disease Control and Prevention (CDC) – The CDC is making an official change to the childhood vaccine schedule. The childhood vaccine schedule is a list of vaccines and timeline for when children should get them. The CDC is going to change the guidance for vaccines that stop people from getting a few different viruses, including the flu. Previously, it was recommended that all kids get these vaccines no matter what. Now, the CDC is putting those vaccines in another category called "shared decision-making." This means that families should talk to their doctor to decide whether or not to get these vaccines for their kids.
Health experts are worried because this new advice might mean that fewer kids get vaccinated for these diseases. People might be confused and think that vaccines aren't safe. They might get fewer vaccines, which means more kids might be at risk of getting those diseases. People might be confused about this advice, and they might not get a vaccine. This could be bad for people with disabilities, especially people who have a disability that makes it easier for them to get sick or people who use a device to help them breathe.
Why is this happening?
Previously, President Trump sent a memo to HHS and CDC. He said that he wanted those agencies to make changes to the childhood vaccine schedule so it looks more like the childhood vaccine schedule in a few other countries. The countries he listed usually recommend fewer vaccines for children.
Secretary Kennedy is very interested in changing vaccine policy in the U.S. Public health experts are really worried about changing the government's advice about the childhood vaccine schedule. This is because these diseases can be really dangerous, and there have already been 289 child deaths from the flu last year. It was the deadliest flu season in a very long time.
What are people saying about it?
When President Trump's memo came out, public health experts were worried. They said that the countries listed in the memo are different from the U.S. in a few different ways, so we should not try to be more like them when it comes to vaccines.
On Monday, Senator Bill Cassidy (R-Louisiana), Chair of the Senate Health, Education, Labor, and Pensions (HELP) Committee, posted on social media. It seemed like he was reacting to these vaccine guidance changes. He said that the childhood vaccine schedule is not mandatory, which means that people don't have to follow it like they would follow the law. He said that changing the childhood vaccine schedule based on no input from vaccine scientists is dangerous. He said that these changes will make America sicker and make people more afraid of vaccines for no reason.
Centers for Medicare and Medicaid Services (CMS) – CMS says that states don't have to report information on kids getting vaccines. States usually have to tell CMS how many kids are getting vaccines and other information like that. Now, CMS is saying that states don't have to tell them that information anymore. This is part of Secretary Kennedy's work to make vaccines less important to the government.
Health Resources and Services Administration (HRSA) – On December 29, the Advisory Commission on Childhood Vaccines (ACCV) met. This is a group that is supposed to meet four times a year to review the Vaccine Injury Compensation Program (VICP). The VICP is a program where people can go if they think a vaccine hurt them. This was the only meeting in 2025, and it did not result in any policy changes. |
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GAO Report on Healthcare Accessibility |
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The Government Accountability Office (GAO) released a new report on barriers to healthcare that people with disabilities face. GAO examined barriers in medical facilities, medical equipment, and technology, as well as issues regarding provider training, communication, and bias. Because the Department of Health and Human Services (HHS) does not collect national data from people with disabilities about healthcare accessibility, GAO also analyzed where there are gaps in federal data collection and made recommendations to fix them. GAO conducted a survey of 1,194 adults with disabilities and “interviewed HHS officials and representatives from nine disability associations and research groups and two accrediting organizations” in order to collect data on the experiences of people with disabilities in medical environments. |
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Key Takeaways |
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Medical equipment, exam rooms, and medical facilities are often inaccessible to people with disabilities; this includes things like scales, exam tables, mammography equipment, and dental chairs.
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A lack of accessible communication options makes it harder for people with disabilities to get the information they need about their health. This was a significant challenge among people who are blind or have low vision, deaf people, and people with intellectual or developmental disabilities.
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While HHS has acknowledged the importance of collecting nationwide data on healthcare accessibility, “HHS does not have plans to collect national-level data from people with disabilities on the accessibility of health care.” Different agencies within HHS collect data, but they use different standards and are not uniform.
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HHS conducts oversight of healthcare organizations to assess accessibility through the Centers for Medicare and Medicaid Services (CMS) and the Office of Civil Rights (OCR). However, information is not collected routinely or consistently across these agencies.
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GAO recommends that HHS develop a plan to figure out how to make progress to improving healthcare accessibility across the country, including ensuring accountability for healthcare organizations.
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GAO recommends that OCR “develop a mechanism to compile and publicly share on an annual basis summary data on resolved complaints and compliance reviews” and provide more guidance to healthcare organizations about their responsibilities under Section 504 of the Rehabilitation Act.
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Plain Language |
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The Government Accountability Office (GAO) is a government agency that does research and looks into different government agencies. GAO released a new report on barriers to healthcare for people with disabilities. You can read an easy read version of the report.
The report looked at accessibility issues with medical facilities (like a doctor's office), medical equipment (like a scale or an exam table), and technology. The Department of Health and Human Services (HHS) does not collect information on healthcare accessibility across the country. GAO made recommendations to start getting HHS to collect this important information.
In order to do this report, GAO did a survey of 1,194 adults with disabilities, interviewed people at nine different disability organizations, and talked to people at a few different organizations that do healthcare or research. They found a few important things about how people with disabilities have trouble accessing healthcare.
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Medical equipment, exam rooms, and medical facilities are often inaccessible to people with disabilities. This includes things like scales, exam tables, and dental chairs. It can be hard for people to get up on exam tables or to use the scales to get weighed.
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There are issues with a lot of communication options. Many people with disabilities are not able to communicate with healthcare organizations or doctors. This might be because they are blind or have low vision, are deaf or hard of hearing, or have an intellectual or developmental disability. Communication is important because people need to have information about their healthcare.
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HHS does not have plans to collect national-level information from people with disabilities on the accessibility of healthcare. Different agencies within HHS collect information. However, they use different questions and are different from each other. It is hard to get clear information that matches when different agencies are not using the same kinds of questions or surveys.
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The Centers for Medicare and Medicaid Services (CMS) and the Office of Civil Rights (OCR) look at healthcare accessibility. However, CMS and OCR are not getting this information on a regular basis.
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GAO recommends that HHS develop a plan to figure out how to improve healthcare accessibility across the country.
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GAO recommends that OCR work on publicly sharing information about accessibility issues. They want OCR to give healthcare organizations more information about how they need to follow the law of the Rehabilitation Act.
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ABLE Accounts |
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Beginning this month, ABLE accounts are now available to many more people. Previously, only people who had a disability acquired by the age of 26 were eligible to open ABLE accounts. Because of the ABLE Age Adjustment Act, people who acquired their disability by the age of 46 are now eligible as well. The law also means that people can now save more in their ABLE accounts—the contribution limit is increasing from $19,000 to $20,000. The ABLE Age Adjustment Act was included in the Fiscal Year 2023 Omnibus funding bill.
ABLE accounts were created by the Achieving a Better Life Experience (ABLE) Act in 2014. This law allows people with disabilities to open savings accounts where they can save up to $100,000 without losing their benefits. Because many government benefit programs have asset limits, people often cannot save for the future without risking their eligibility for programs like Social Security or Medicaid. |
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Plain Language |
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ABLE accounts help people save money for the future. They allow people to keep their benefits like Social Security or Medicaid, while still letting them save money. Beginning this month, ABLE accounts are now available to many more people. Before, only people who got their disability before they turned 26 were allowed to open ABLE accounts. Because of the ABLE Age Adjustment Act, people who got their disability by the age of 46 are now allowed to get ABLE accounts too. The law also means that people can now save more in their ABLE accounts. The ABLE Age Adjustment Act was included in the Fiscal Year 2023 funding bill.
ABLE accounts were created by the Achieving a Better Life Experience (ABLE) Act in 2014. This law allows people with disabilities to open savings accounts where they can save up to $100,000 without losing their benefits. Many government benefit programs make people prove that they don't have very much money. People with disabilities often cannot save for the future without risking losing these programs, which sometimes keeps people with disabilities poorer than nondisabled people. |
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Representative Steny Hoyer to Retire |
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U.S. Representative Steny Hoyer (D-MD) announced he will retire at the end of his term, which is in early 2027. Representative Hoyer has been a champion for disability rights, serving as the lead House sponsor of the Americans with Disabilities Act (ADA). He has served in Congress for nearly 45 years, making him the longest-serving Democrat in Congress. |
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Plain Language |
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U.S. Representative Steny Hoyer (D-Maryland) announced he will leave Congress at the end of his term. His term ends in early 2027. He has been in Congress for almost 45 years. He has been a champion for disability rights, including when he was the lead of the Americans with Disabilities Act (ADA) in the House. |
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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 Stop Unfair Medicaid Recoveries Act would end a rule that makes states do Medicaid repayments when people die. The rule says that when someone who got long-term care dies, states have to try to get a payment from the person’s family. It is very hard for the families to repay the money.
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A bill to take back some money that the Department of Education isn’t using, and give it to states for some programs under the Individuals with Disabilities Education Act
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The BRIDGE for Young-Onset Alzheimer’s Disease Act would help people get their disability insurance benefits faster if they get Alzheimer’s. Alzheimer's is a disease that makes people forget things.
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A bill to provide helpful information about choosing the right college to students with disabilities and their families
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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 past blog posts here. |
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Words to Know |
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Continuing Resolution
A continuing resolution (also called a CR), which is a funding bill that makes sure the government has enough money for a few more months.
Vaccines
Vaccines are shots that keep people from getting diseases.
Dismantle
Dismantling something means to take it apart. |
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