NAPA, Calif. — Jessica Pequeño of Napa has been taking breaks from watching the news lately. But when she opens her social media feeds for the support groups she frequents for parents of children with disabilities, they’re full of panicked chatter about the news she’s been trying to avoid.

Medicaid — the state and federally funded program that provides health coverage for almost 15 million Californians and about half of the state’s children — could face billions of dollars in federal cuts under a budget proposal from Republicans in the U.S. House of Representatives. That’s alarmed families like the Pequeños, who rely on Medicaid, called Medi-Cal in California, to pay for medical care and other support for their children with chronic conditions.

Pequeño’s 11-year-old son, Xavier, has a rare genetic immune disorder that undermines his body’s ability to fight disease. Thanks to Medi-Cal, Xavier receives medications that keep him alive and would otherwise cost his family around $100,000 a month. The program also pays for Xavier’s medical equipment such as a wheelchair and portable oxygen tank, antibody and respiratory treatments, and hospital stays when he gets sick.

“It’s allowed him to go to school. It’s allowed him to be home and not living in a hospital 24 hours a day,” said Pequeño, who cares for Xavier while her husband works as a forklift driver. “There’s no way right now we can afford his monthly medications, his treatments or his hospitalizations. Without Medi-Cal it would essentially be a death sentence for him.”

Parents of children with special health care needs aren’t the only ones alarmed about the potential cuts — disability advocates, health care providers, budget analysts and state lawmakers have also expressed concern. Although the House proposal, passed Feb. 25, doesn’t specifically call for Medicaid cuts, it does direct the House Energy and Commerce Committee, which oversees Medicaid, to come up with $880 billion in savings over the next 10 years. Achieving that amount of savings would be difficult without making cuts to Medicaid, experts said.

The requested budget cuts still need to be adopted by the Senate, written into legislation and passed by Congress. But Aaron Carruthers, executive director of the California State Council on Developmental Disabilities, said he doesn’t see how cuts to Medicaid can be avoided under the Republican plan. The council is an independent state body that advises the governor and legislature on policies related to adults and children with developmental challenges.

“This is a four-alarm fire, this is all-hands-on-deck, there is no messing around,” Carruthers said. “The cuts are so big that it’s going to (impact) everyone in the program, there’s no way around it.”

President Donald Trump and House Speaker Mike Johnson have said Republicans — who have sought to cut Medicaid in the past — won’t touch it this time, but will look to reduce fraud, waste and abuse. But information from the Congressional Budget Office shows that there is no way to reduce the budget by the proposed $880 billion without making cuts to Medicaid (the only other option is cutting Medicare — the health insurance program for people over 65 — and Republicans have ruled that out too). Republicans have also floated proposals aimed at reducing spending on the program such as through work requirements (although most people with Medicaid already work), capping the amount of Medicaid funding sent to states, and making it harder for people to enroll and renew coverage.

“We don’t really have specific proposals to react to yet, it’s kind of a list of ideas and most of them are bad ideas,” said Mike Odeh, senior director of health policy at Children Now, a children’s research and advocacy organization. “For kids with special health care needs, thinking about their access to specialty care, to medical equipment, to prescription drugs — all of that could be jeopardized, as well as the care and coverage of their family members.”

Medi-Cal is especially important for children with disabilities because they often need more specialized and expensive care than children without special health care needs. The program recognizes this and allows some of these children to qualify for Medi-Cal even if their families earn too much to make them eligible under standard rules, or if a parent already has insurance through an employer. Private insurance typically doesn’t cover the full cost of care for people with severe disabilities, and copays and coinsurance add up when someone needs a lot of medical care. In these instances, Medi-Cal covers the costs that private insurance doesn’t.

Anita Morris of Fresno relies on Medi-Cal to cover costs for her daughter, Jayline, that her employer insurance won’t cover. These include daily nursing care, diapers and a wheelchair. Previously, Jayline also received physical and occupational therapy. Jayline, 26, has severe epilepsy and autism due to a genetic disorder. She can’t talk, walk or eat by herself. Without the nursing that Medi-Cal provides, Morris said she’d have to quit her job as a clinical social worker to take care of her.

“I’m not freaking out yet, but it does cause me concern,” Morris said. “If they need to look at abuse and fraud, do that, but don’t take away the services in that process because the services aren’t causing the abuse and fraud.”

Cuts would also impact children with special health care needs who aren’t enrolled in Medi-Cal, said Ann Kuhns, executive director of the Children’s Hospital Association. That’s because, for most hospitals and providers of specialty care to children, about two-thirds of their income comes from Medi-Cal patients, she explained.

“If you start reducing support for that network you jeopardize access to care for all of the children that rely on those services, not just the ones on Medi-Cal,” she said. “The whole system is knitted together.”
Beyond Medi-Cal health insurance, Medicaid dollars support other important programs and services for children and youth with disabilities, including Regional Centers, early intervention programs for children with developmental delays, California Children’s Services, in-home nursing, and special education services such as speech therapy and school health aides.

Fernando Gomez of West Los Angeles has two sons who receive Medicaid-funded services through their local Regional Center. Oscar Antonio, who is 18 and has Down syndrome, has a physical therapist who works with him to navigate daily life and build independence. He’s also received speech therapy to help him learn to talk. As a result, a dream that once seemed impossible — attending college — has become feasible, Gomez said. Meanwhile, Gomez’s other son, Diego, 15, who has autism, is receiving educational support.

Gomez, who’s retired, said it would be impossible for him and his wife to afford those services themselves. He also worries that Medicaid cuts could destabilize the lives of other Latinx families and their children and undermine progress he believes California has made toward reducing disparities in access to Regional Center services.

“I call it a death blow because it will be, it literally will be,” he said. “It will kill many of our family members’ ability to have a productive and engaged … life.”

While California contributes state funds to Medi-Cal, more than half of the funding — $98 billion out of $161 billion in Medi-Cal spending — comes from the federal government. That makes it difficult for the state to backfill any large federal cuts to the program, health policy advocates and budget experts said.
For now, many organizations and advocacy groups are focused on trying to avoid cuts to the program. Some groups are offering guidance and trainings for parents of children with special health care needs on how to share their concerns and Medi-Cal stories with their congressional representatives. Others said they are connecting directly with those representatives to urge against cuts.

Nevertheless, some said California could do more to prepare for potential changes to Medicaid. The California Budget and Policy Center has suggested the state raise corporate tax rates, eliminate certain tax loopholes, and reduce tax breaks for the wealthy.
“State leaders really could proactively develop contingency plans and explore solutions to safeguard health care coverage,” said Adriana Ramos-Yamamoto, a senior policy analyst with the center. “We know that there are actions that state leaders can take to raise additional revenue equitably, making sure that profitable corporations pay their fair share in order to support critical health care programs like Medi-Cal.”

Aides for the chairs of California’s Assembly and Senate health committees, Assemblymember Mia Bonta and Senator Caroline Menjivar respectively, said they were both unavailable for interviews. However, Assemblymember Bonta’s office sent a written response that said she is “committed to ensuring our communities can continue to access the care they need.”

Pequeño said she’d like to see more evidence that the California legislature is trying to keep the cuts from happening, and wants to know what the state will do to protect children like Xavier if cuts do go ahead.

“What is the backup plan?” she said. “What are they doing and what can they legally do to help protect families like ours that are going through these things and are wondering, ‘What’s next?'”

In the meantime, she and her family are trying to come up with their own backup plan. Pequeño said she’s even considering taking Xavier to another country, such as Canada, so he can get care.

“The thought of losing benefits that keep him alive and the possibility of having to watch things get cut and watch his quality of life deteriorate … watch him essentially die because of a choice the government made, it’s terrifying,” she said. “No one’s life should be cut short because of the government’s choices.”

This story was produced in collaboration with the California Health Report.