What Trump's First 100 Days Mean for Medically Complex Children and Their Families

The first 100 days of the Trump administration were a five-alarm fire for families of medically complex children. Trump appointees are threatening medical research; critical programs children and families rely upon for survival; and continued access to medical supplies, equipment, and medications. The uncertainty and chaos caused by constantly-shifting policy announcements have real impacts on the daily lives of children and families.  

Here’s what you need to know about the lowlights of the first 100 days: 

The Future of Medical Research 

Medical research is essential for medically complex and disabled children, especially those with rare and orphan diseases. The administration’s funding freeze on the National Institutes of Health has effectively ended research programs into a wide swath of diseases, syndromes, genetic conditions, and more. NIH grant funding normally supports billions of dollars in medical research across the United States; the agency funds more biomedical research than any other entity in the world.  

Medical research in the United States could be thrown into turmoil, with active projects losing funding that will make it impossible to continue, including those working on pilot programs and experimental therapies with medically complex children. Suppressing medical research in the United States will drive researchers overseas, causing a major brain drain for a nation that has played a critical role in developing cutting-edge medicine. Moving overseas isn’t simple, either: Researchers will be forced to abandon existing experiments and biobanks, and set up labs in other countries, often from scratch, setting their projects back years if not decades.

The administration’s attacks on immigrants are also directly harming medical research. For example, Harvard researcher Kseniia Petrova, a critical and irreplaceable cancer researcher, is facing deportation for a minor customs violation. The United States should be a nation that attracts international talent to the most advanced labs and hospitals in the world, building on a legacy of scientific excellence, and instead, it’s driving talent away.  

The Future of Medicaid and Disability Programs 

In 2017, the Trump administration came for Medicaid, and was soundly defeated by disability activists, families of medically complex children, and their allies. In 2025, they’re going to try again. Cuts to Medicaid would have an immediate and deadly impact for children and families that count on Medicaid across the United States: It could threaten access to medications and supplies; routine medical care; critical medical devices; and treatments and therapies. It will also undermine the Home and Community Based Services programs that provide immediate, necessary supports to children and families.  

Medicaid isn’t the only program at risk. The Administration for Community Living, which provides critical funding, research, and services that keep people in their communities, was abolished by HHS Secretary Robert F. Kennedy, Jr. in March. This organization is a critical part of the social safety net keeping medically complex children safe at home with their families, NOT in institutional settings, and works with more that 2,500 community organizations nationwide that count on ACL funding to serve disabled people and families in their regions. The National Institute of Child Health and Human Development has also been targeted with cuts, as has the Center for Medicare and Medicaid Services. 

Medically complex children also count on laws such as the Individuals with Disabilities Education Act, which protects access to a free, appropriate public education for all Americans, including disabled children. Implementation of IDEA and related special education services could suffer under Trump’s cuts to the Department of Education. The Trump administration is also withdrawing guidance related to the Americans with Disabilities Act and directing the Department of Justice to stop pursuing civil rights complaints, including those related to disability discrimination.  

This is a cradle to grave problem: The administration has even come for Meals on Wheels, a much-beloved nutrition program that feeds two million seniors annually across the United States.  

Secretary of Health and Human Services Robert F. Kennedy, JR. and the Make America Healthy Again Scam 

Robert F. Kennedy, Jr. is under the impression that basic, established science and medicine is up for debate. He doesn’t believe in the germ theory of disease, thinks autistic children can’t grow up to contribute to society, and has threatened to send autistic kids and people on psychiatric medication into camps, saying they need “wellness farms.” His “Make America Healthy Again” plan is more like Make America Sick Again, and some of his moves, such as his push to shutter the Substance Abuse and Mental Health Support Administration, may not even be legal. 

Under Kennedy’s supervision, the Department of Health and Human Services has fired 10,000 people and gutted or terminated a huge number of critical public health projects. These include a facility that studies dangerous infectious diseases such as Ebola, a program to address childhood lead exposure, and childhood vaccination programs. Without these programs providing oversight, medically complex children will be at increased risk of illnesses from infectious disease and contamination in the food and medicine supply. These firings have also affected departments such as those that oversee the Affordable Care Act marketplace, with remaining staff warning that they are inadequately prepared to meet the needs of the American public.  

The Impact of Tariffs on Pharmaceuticals, Medical Supplies, and Medical Equipment 

The Trump administration has announced, revised, delayed, and re-announced tariffs, a tax on imports into the United States, a number of times. While tariffs are paid by the importer, importers pass these costs on to consumers. Uncertainty over tariffs is scary for planning, and it’s also wreaking havoc with imports. Companies warn that it may be difficult or impossible to obtain some goods as the added tariffs may cause some things to skyrocket in cost, in some cases more than doubling.  

Medically complex children and their families rely on critical supplies from all over the world, and these are NOT exempt from tariffs, even when they are life-saving necessities. Products from China, a nation that manufactures many basic medical supplies, could face tariffs as high as 145%, though on Monday, May 12, the administration announced a 90-day “pause” and a possibility of lower tariffs. India, a major pharmaceutical producer that also makes 60% of the world’s vaccines, has been threatened with a tariff rate of 26%, with the administration deferring enforcement until July 9.  

The Trump administration says tariffs will lure manufacturing back to the United States by encouraging companies to manufacture domestically. However, many manufacturers say it’s not that simple: Moving production into the United States will be difficult or even impossible, especially on the short timeline needed to ensure that there are no delays in the supply chain.  

Just last week, President Trump suggested that kids will simply have to live with “two dolls instead of 30 dolls,” but dolls may be the least of parents’ concerns as they struggle to find basic supplies. The supply chain disruptions caused by COVID-19 in 2020 could be a preview of what’s to come, with some products not available at any price. 

Confusion and conflicting information about tariffs has also had an explosive impact on financial markets, which is cutting directly into the bottom line of 401(k)s, mutual funds, and other investments. Many families with medically complex children count on long-term investments to ensure that their children will be cared for into adulthood, and, critically, that they will continue to receive the support they need after their parents are gone.  

Elon Musk and the Department of Government Efficiency 

Elon Musk, who hasn’t faced Senate confirmation or any other safeguards, has headed up a campaign targeting nearly every federal government agency for drastic cuts, in some cases shuttering entire departments. Musk claims that this is necessary to prevent fraud and waste — incidentally, speaking of fraud, the entity is resorting to faking its own numbers — and has also proposed that government diversity, equity, and inclusion programs are causing “reverse discrimination.” In fact, just the opposite may be true: Diversity, equity, and inclusion in government agencies and the services they provide pays off in a big way, creating a more level playing field and ensuring access to opportunity for everyone.  

At times, Musk’s hasty and indiscriminate approach has caused severe disruptions. Experienced federal auditors say he’s not following basic procedures that could actually identify fraud and waste; instead, he’s creating more waste and confusion. 

Even Musk admits that his slash and burn approach could cause “temporary economic hardship,” but he didn’t say for who, so we will: These policies will hit children and families particularly hard. 

Here's the Good News 

When we fight, we win.  

When RFK, Jr. proposed a “registry” of autistic children that could be used to create profiles for targeting and discrimination, disabled Americans and supporters said NO, and it worked: The agency rolled back the proposal. When RFK, Jr. revived the proposal several days later, Illinois Governor JB Pritzger quickly moved to protect autistic residents of his state, establishing critical safeguards that other states could adopt as well. 

When the Department of Health and Human Services announced that it was going to cut funding to the Women’s Health Initiative, which among other things provides critical funding supports for researching high-risk pregnancies, Americans said NO, and the agency reversed its plan.  

When states and research institutions joined forces to say NO to the Trump administration over NIH funding cuts, the judge agreed with them, issuing an injunction to block them. 

These events suggest the administration is responsive to public outcry — and legal challenges — and united voices have a real impact on policy. Many of the programs under attack are very popular, and the discovery that the administration wants to defund or severely limit them has mobilized members of the public. Medically complex children, their families, and their allies are rising together, and it’s working.