December 19, 2025 | Vol. MMXXV | Issue 142

In this edition:

• Healthcare

• Department of Health and Human Services

• Department of Education

• New Legislation

• AUCD Materials

• Words to Know

Healthcare

The Affordable Care Act (ACA) tax credits will expire at the end of the year. If Congress doesn’t take action to extend them, many Americans will see their healthcare premiums more than double in January.

On Wednesday, the House of Representatives voted to pass House Republicans’ healthcare bill. According to a new report from the Congressional Budget Office (CBO), the legislation would decrease the number of people with health insurance by an average of 100,000 and would reduce the deficit by $35.6 billion. It does not include an extension of the ACA tax credits and Democrats aren’t supportive of it. The House and Senate took their last votes of the year on Thursday.

Key Takeaways

The healthcare fight in Congress has led to tensions between two factions within the Republican caucus. There are those who are pushing for an extension of the tax credits because they are concerned about the skyrocketing healthcare costs their constituents will soon face, and those who believe the ACA is so flawed that any element of it that can be curbed should be. Because the ACA tax credits will not be extended by the end of the year, they will expire, leaving many people with much more expensive premiums each month.

Plain Language

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 will end 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, but those bills are not making progress in Congress.

On Wednesday, the House of Representatives voted to pass House Republicans’ healthcare bill. The bill would decrease the number of people with health insurance. The Congressional Budget Office did a report on the bill, and they say that about 100,000 people could lose their health insurance. The bill would save the government money. The CBO says it would save the government $35.6 billion. It does not include an extension of the ACA tax credits. Democrats aren’t supportive of it. The House and Senate took their last votes of the year on Thursday.

There has been disagreement between two different groups of Republican lawmakers in Congress. Some of them want to extend the tax credits because they are worried about the big healthcare costs that people will have if the tax credits go away. Other lawmakers believe the Affordable Care Act is a bad law. They think that because the tax credits are from the ACA and they were created during COVID, they should end. Because the ACA tax credits will not be extended by the end of the year, they will go away. Many people will have to pay a lot more for healthcare every month starting in January.

Department of Health and Human Services

National Institutes of Health (NIH) – According to new reporting, Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. appointed three new members to the Interagency Autism Coordinating Committee (IACC). All three have espoused a belief in a potential link between vaccines and autism. The IACC is a federal committee that advises the HHS Secretary, coordinates across the federal government, and provides a public forum for discussion on issues related to autism.

Centers for Disease Control and Prevention (CDC) – On December 16, the CDC signed off on the new recommendations from the Advisory Committee on Immunization Practices (ACIP) on the hepatitis B vaccine. ACIP changed the guidance for the vaccine, recommending that only infants whose mothers have tested positive for hepatitis B or have unknown status get the vaccination at birth. They suggest that infants whose mothers test negative for the disease get vaccinated no earlier than two months. Previously, it was recommended that all infants get vaccinated against hepatitis B at birth. Read more in this previous issue of Disability Policy News.

Health Resources and Services Administration (HRSA) – The Advisory Commission on Childhood Vaccines (ACCV) has announced it will hold meetings on December 29. The ACCV reviews issues relating to the Vaccine Injury Compensation Program (VICP) and makes recommendations to the HHS Secretary.

American Academy of Pediatrics – HHS canceled seven federal grants worth millions of dollars for the American Academy of Pediatrics (AAP). The funding included money for projects to prevent fetal alcohol syndrome, reduce sudden infant death syndrome, and identify autism early. The AAP works to improve the health and wellbeing of infants, children, and young adults. It is currently suing HHS over its changed vaccine policies. The Washington Post reports that "Administration officials cited a range of reasons" for the cancelation, including AAP's "use of 'identity-based language,' such as references to racial disparities and 'pregnant people,' and insufficient focus in at least one grant program on nutrition and chronic disease prevention, which they said do not align with the agency's priorities."

Centers for Medicare & Medicaid Services (CMS) – On December 18, the Administration announced two new proposed rules that would block most forms of gender-affirming care for minors. One rule would prohibit doctors and hospitals from receiving federal Medicaid reimbursement for gender-affirming care provided to patients under 18. The other rule would prohibit federal Medicaid or Medicare funding for hospitals that provide gender-affirming care provided to patients under 18. The Administration also announced that HHS would no longer classify gender dysphoria as a disability. The proposed rules are subject to a public comment period before they can be finalized.

Key Takeaways

Secretary Kennedy has made reshaping vaccine policy a pillar of his policy priorities since he began his tenure at HHS. This includes changing the makeup of various committees and staff at HHS, including ACIP and now IACC. Under Secretary Kennedy, HHS has also consistently canceled significant sums of funding for grantees doing work the Administration disagrees with and entities spending more money than they think is necessary.

Restricting transgender care has been a priority for the Administration. Because almost every hospital in the country receives Medicare and Medicaid reimbursement, these new rules could effectively end gender-affirming care provided in hospitals across the country. According to the World Health Organization, gender-affirming care is a range of "social, psychological, behavioral or medical (including hormonal treatment or surgery) interventions designed to support and affirm an individual’s gender identity." Several leading health organizations have pushed back on the Administration's new rules and disparaging rhetoric around gender-affirming care. You can read a statement from disability rights organizations—who say that the new rulemaking may violate Section 504 of the Rehabilitation Act—here.

Plain Language

Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. cares a lot about changing vaccine policy in the U.S. Vaccines are shots people get to stay healthy and not get diseases. To change vaccine policy, Secretary Kennedy has made a lot of changes to people in different committees and groups working at HHS. This includes the Advisory Committee on Immunization Practices (ACIP), which makes decisions about vaccines. This also includes a committee called the Interagency Autism Coordinating Committee (IACC). IACC helps the HHS Secretary make decisions about autism policy. This committee works with many people across the whole federal government to give information about autism.

Here are some things that have happened at HHS recently.

National Institutes of Health (NIH) – According to a new article, Secretary Kennedy chose three new members to be in IACC. All three have said they believe there might be a connection between vaccines and autism.

Centers for Disease Control and Prevention (CDC) – On December 16, the CDC made a decision to approve new advice from ACIP. This new advice was about a disease called hepatitis B. Before, the government said that all babies have to get the vaccine when they are born. Now, ACIP is saying that if a baby's mother has hepatitis B or hasn't gotten a test to see if they have it, then the baby has to be vaccinated. If the baby's mother takes a test to see if she has hepatitis B and the test says she doesn't have it, that baby doesn't have to be vaccinated yet. ACIP suggests parents should wait until the baby is two months before the baby gets vaccinated. You can read more about this in an earlier newsletter from Disability Policy News.

Health Resources and Services Administration (HRSA) – The Advisory Commission on Childhood Vaccines (ACCV) is a group in HHS. This group reviews information about whether people got hurt by a vaccine. They give advice to the HHS Secretary about this.

American Academy of Pediatrics – The American Academy of Pediatrics (AAP) is an organization that works on health issues that affect children. HHS canceled seven federal grants for AAP. This federal funding included millions of dollars for different projects. One project worked on stopping babies from getting "fetal alcohol syndrome," which is a disability babies can get if their mother drinks alcohol when she is pregnant. Another project was working on how to stop "sudden infant death syndrome," which is a way that babies die mysteriously. AAP was also working on projects to figure out if a child has autism.

AAP is suing HHS, which means it wants HHS to change something. AAP wants HHS to change its vaccine policies. The Washington Post said that people in the Administration had a few reasons for canceling this funding. They said AAP used certain words they don't agree with, and talked about how people from different races have different experiences. Race means the color of your skin. The Administration thinks the government shouldn't give money to organizations that talk about that kind of thing. The Administration also said AAP didn't focus enough on nutrition. Under Secretary Kennedy, HHS has canceled a lot of money for many different organizations if they disagree with their work.

On December 18, the Administration announced two new rules that affect gender-affirming care for people under 18 years old. Gender-affirming care is health care that helps people feel more comfortable in their bodies. Many people who are transgender get gender-affirming care. A transgender person is someone whose gender is not the same as the sex they were assigned at birth. A transgender woman is a woman who was assigned male at birth. A transgender man is a man who was assigned female at birth. Gender-affirming health care can help with gender dysphoria. Gender dysphoria is when someone feels like their body and their gender do not match and they feel upset because of that. This information is from the Autistic Self Advocacy Network (ASAN), which has a lot more information about this topic, here.

One rule would stop the federal government from sending Medicaid money to doctors and hospitals for gender-affirming care for people under 18. The other rule would stop the federal government from sending Medicaid and Medicare money to hospitals if the hospital provides gender-affirming care to people under 18. Because so many hospitals get Medicaid and Medicare money for different services, this means that most hospitals in the U.S. would have to stop giving gender-affirming care to people younger than 18. This could be very hard for people who have gender dysphoria and people who are transgender. The Administration also announced that HHS would no longer say that gender dysphoria as a disability.

Before these rules can be final and official, they will have a comment period. This is an amount of time where anyone can submit a comment and say if they are for or against the rule. A few major health organizations have pushed back on the Administration's new rules and the negative way the Administration talks about transgender people. A few disability rights organizations put out a statement against the new rules. They say that these new rules could be against the Rehabilitation Act, which is a law that gives a lot of rights and services for people with disabilities.

Department of Education

On December 17, disability rights advocates met with Department of Education Secretary Linda McMahon and other department officials to talk about anticipated changes to the Office of Special Education Programs (OSEP), Rehabilitation Services Administration (RSA), and the Office for Civil Rights (OCR). Advocates had previously heard that those offices would be moved to the Department of Health and Human Services on December 24, which has been a significant concern. Department officials told members of the Consortium for Constituents with Disabilities Education Taskforce, a coalition of disability advocates from different organizations, that while those program transfers are still planned, they won’t happen on Christmas Eve, and they may be moved to the Department of Labor instead of HHS.

Key Takeaways

The Administration wants to close the Department of Education and has begun to shift its work to other federal agencies through interagency agreements. During the government shutdown, the Administration carried out sweeping layoffs at the aforementioned special education and civil rights offices before hiring back most staff when the government opened again.

Moving these offices to the Department of Labor may be preferable to HHS—the Administration has already moved many early education programs to the Department of Labor, so keeping those programs together may mitigate some harm. In any case, the fragmentation of the Department will be harmful for students with disabilities and has already created issues for students and their families seeking justice for civil rights infractions.

Read more about the IAAs here.

Plain Language

On December 17, disability rights advocates met with Department of Education Secretary Linda McMahon and other department officials. This meeting included people from the Consortium for Constituents with Disabilities Education Taskforce, a group of disability advocates from different organizations. They talked about changes the Administration wants to make to the Office of Special Education Programs (OSEP), Rehabilitation Services Administration (RSA), and the Office for Civil Rights (OCR). These offices support students with disabilities.

Advocates had heard that those offices would be moved to the Department of Health and Human Services (HHS) on December 24. Officials from the Department of Education told people in the meeting that the offices will be moved on a different day and they might be moved to the Department of Labor instead of HHS. Moving these offices to the Department of Labor may be better than HHS. The Administration has already moved many early education programs to the Department of Labor, so it would keep those programs together. In any case, breaking up the Education Department makes it harder for students and parents to get the services and resources they need. Other federal agencies do not have the experts that you need to work on education policy.

The Administration wants to close the Department of Education and has started to move its work to other departments. On November 18, the Administration announced that the Education Department is signing six new agreements. These agreements will move some parts of the Department of Education to the Department of Labor, the Department of the Interior, the Department of Health and Human Services, and the State Department. During the government shutdown, the Administration fired a lot of people at the special education and civil rights offices. They hired most of those people back when the government opened again.

New Legislation

• The Essential Caregivers Act (S.3492) (H.R.6766)

  • Introduced by Senator Richard Blumenthal (D-CT) and Representative Claudia Tenney (R-NY)

  • Would require various nursing and long-term care facilities to permit essential caregivers access during any period in which regular visitation is restricted

  • You can ready Senator Blumenthal's press release here.
    
    

• The Protecting Supplemental Security Income for Disaster Victims Act (H.R.6724)

  • Introduced by Representative Michael Rulli (R-OH)

  • Would ensure that Supplemental Security Income (SSI) recipients do not lose or have their benefits reduced when they receive settlement payments after a tragedy

  • You can read Representative Chris Deluzio's (D-PA) press release here.
    
    

• The Continuous Skilled Nursing (CSN) Quality Improvement Act (H.R.6592)

  • Introduced by Representative Michael Rulli (R-OH)

  • Would develop national quality standards for continuous skilled nursing services provided through Medicaid

  • You can read Rep. Rulli's press release here.
    
    

• The Connecting Caregivers to Medicare Act (H.R.6735) (S.3439)

  • Introduced by Representative Mike Carey (R-OH) and Senator Thom Tillis (R-NC)

  • Would improve outreach and education to Medicare beneficiaries to simplify access to information for family caregivers

  • You can read Rep. Carey's press release here.
    
    

• The Lower Health Care Premiums for All Americans Act (H.R.6703)

  • Introduced by Representative Mariannette Miller-Meeks (R-IA)

  • Would lower healthcare premiums and expand healthcare options for employees

  • You can read Rep. Miller-Meeks' press release here.
    
    

• The Protecting Access to Affordable Coverage Act (H.R.6760)

  • Introduced by Representative Chris Pappas (D-NH)

  • Would extend the 2026 Open Enrollment period and restore auto-reenrollment and the Special Enrollment Period (SEP) which were repealed in H.R.1

  • You can read Rep. Pappas' press release here.
    
    

• H.R.6727

  • Introduced by Representative Ritchie Torres (D-NY)

  • Would remove the exclusion from medical assistance under the Medicaid program of items and services for patients in an institution for mental diseases
    
    

• H.R.6690

  • Introduced by Del. Kimberlyn King-Hinds (R-MP)

  • Would increase the payment limit under Medicaid for the Northern Mariana Islands

Plain Language

There are a few new bills in the U.S. Congress.

• The Essential Caregivers Act would make nursing homes (and other places where older adults and people with disabilities live) allow some caregivers to come provide care during situations when other visitors can't come.
  
  

• The Protecting Supplemental Security Income for Disaster Victims Act would make sure people who get Supplemental Security Income (SSI) do not lose their benefits when they get payments after a tragedy. If you get SSI, you can't have more than $2,000 if you are single, and $3,000 if you are married. Sometimes people get payments from the government or from companies if a disaster happens. This bill would make sure that people can still get their usual SSI benefits even if they get these payments.
  
  

• The Continuous Skilled Nursing (CSN) Quality Improvement Act would make everyone in the country use the same standards for nursing services under Medicaid. This means everyone who provides Medicaid nursing services would have the same rules for how to be good at their jobs.
  
  

• The Connecting Caregivers to Medicare Act would improve outreach and education to people who get Medicare so family caregivers can get important information easily.
  
  

• The Lower Health Care Premiums for All Americans Act would lower healthcare costs for people and give employees more healthcare options.
  
  

• The Protecting Access to Affordable Coverage Act would give people more time to choose healthcare in 2026.
  
  

• A bill to help people who have mental health diseases and live in institutions get healthcare.
  
  

• A bill to allow higher payments for Medicaid services in the Northern Mariana Islands, which is part of the U.S.

AUCD Story Collection

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: 

• Medicaid and its impact on people's lives 

• The impact of dismantling ACL 

• The important work of UCEDDs, LENDs, IDDRCs, PNS’s, DD Councils, P&As

• The impact of zeroing out UCEDDs, LENDs, IDDRCs, PNS’s, DD Councils, P&As  

• Impact of grants that are being cut

• 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. 

AUCD Policy Blog

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. 

This month, we are honoring the life and legacy of disability justice activist and leader Alice Wong with a blog post from three contributors in the AUCD Network: Honoring the Life of Alice Wong

Disability Policy for All with Liz

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 AUCD's Interim Director, Sandy Root-Elledge.

Words to Know

Fetal Alcohol

A disability babies can get if their mother drinks alcohol when she is pregnant.

Sudden Infant Death Syndrome

A way that babies die mysteriously.