Medicaid Cuts May Upend Lives of Youngsters With Disabilities. Can California Do Extra to Put together?

By Claudia Boyd-Barrett

Jessica Pequeño of Napa has been taking breaks from watching the information these days. However when she opens her social media feeds for the assist teams she frequents for fogeys of kids with disabilities, they’re filled with panicked chatter concerning the information she’s been making an attempt to keep away from.

Medicaid — the state and federally funded program that gives well being protection for nearly 15 million Californians and about half of the state’s kids — might face billions of {dollars} in federal cuts beneath a price range proposal from Home Republicans. That’s alarmed households just like the Pequeños, who depend on Medicaid, known as Medi-Cal in California, to pay for medical care and different assist for his or her kids with power situations.

Pequeño’s 11-year-old son, Xavier, has a uncommon genetic immune dysfunction that undermines his physique’s capability to combat illness. Due to Medi-Cal, Xavier receives medicines that maintain him alive and would in any other case value his household round $100,000 a month. This system additionally pays for Xavier’s medical tools similar to a wheelchair and moveable oxygen tank, antibody and respiratory remedies, and hospital stays when he will get 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,” mentioned Pequeño, who cares for Xavier whereas 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.”

Dad and mom of kids with particular well being care wants aren’t the one ones alarmed concerning the potential cuts — incapacity advocates, well being care suppliers, price range analysts and state lawmakers have additionally expressed concern. Though the Home proposal, handed Feb. 25, doesn’t particularly name for Medicaid cuts, it does direct the Home Power and Commerce Committee, which oversees Medicaid, to provide you with $880 billion in financial savings over the following 10 years. Attaining that quantity of financial savings could be tough with out making cuts to Medicaid, specialists mentioned.

The requested price range cuts nonetheless should be adopted by the Senate, written into laws and handed by Congress. However Aaron Carruthers, govt director of the California State Council on Developmental Disabilities, mentioned he doesn’t see how cuts to Medicaid might be averted beneath the Republican plan. The council is an unbiased state physique that advises the governor and legislature on insurance policies associated to adults and youngsters with developmental challenges.

“This is a four-alarm fire, this is all-hands-on-deck, there is no messing around,” Carruthers mentioned. “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 Home Speaker Mike Johnson have mentioned Republicans — who’ve sought to chop Medicaid previously — received’t contact it this time, however will look to scale back fraud, waste and abuse. However data from the Congressional Price range Workplace exhibits that there isn’t any method to cut back the price range by the proposed $880 billion with out making cuts to Medicaid (the one different choice is chopping Medicare – the medical insurance program for folks over 65 – and Republicans have dominated that out too). Republicans have additionally floated proposals aimed toward decreasing spending on this system similar to by means of work necessities (though most individuals with Medicaid already work), capping the quantity of Medicaid funding despatched to states, and making it more durable for folks to enroll and renew protection.

“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,” mentioned Mike Odeh, senior director of well being coverage at Youngsters Now, a kids’s analysis and advocacy group. “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 particularly vital for kids with disabilities as a result of they usually want extra specialised and costly care than kids with out particular well being care wants. This system acknowledges this and permits a few of these kids to qualify for Medi-Cal even when their households earn an excessive amount of to make them eligible beneath customary guidelines, or if a father or mother already has insurance coverage by means of an employer. Non-public insurance coverage usually doesn’t cowl the total value of look after folks with extreme disabilities, and copays and coinsurance add up when somebody wants plenty of medical care. In these cases, Medi-Cal covers the prices that non-public insurance coverage doesn’t.

Anita Morris of Fresno depends on Medi-Cal to cowl prices for her daughter, Jayline, that her employer insurance coverage received’t cowl. These embody each day nursing care, diapers and a wheelchair. Beforehand, Jayline additionally acquired bodily and occupational remedy. Jayline, 26, has extreme epilepsy and autism on account of a genetic dysfunction. She will be able to’t discuss, stroll or eat by herself. With out the nursing that Medi-Cal offers, Morris mentioned she’d need to stop her job as a medical social employee to handle her.

“I’m not freaking out yet, but it does cause me concern,” Morris mentioned. “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 additionally impression kids with particular well being care wants who aren’t enrolled in Medi-Cal, mentioned Ann Kuhns, govt director of the Youngsters’s Hospital Affiliation. That’s as a result of, for many hospitals and suppliers of specialty care to kids, about two-thirds of their earnings comes from Medi-Cal sufferers, she defined.

“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 mentioned. “The whole system is knitted together.”

Past Medi-Cal medical insurance, Medicaid {dollars} assist different vital packages and providers for kids and youth with disabilities, together with Regional Facilities, early intervention packages for kids with developmental delays, California Youngsters’s Providers, in-home nursing, and particular schooling providers similar to speech remedy and faculty well being aides.

Fernando Gomez of West Los Angeles has two sons who obtain Medicaid-funded providers by means of their native Regional Middle. Oscar Antonio, who is eighteen and has Down Syndrome, has a bodily therapist who works with him to navigate each day life and construct independence. He’s additionally acquired speech remedy to assist him be taught to speak. Consequently, a dream that when appeared inconceivable — attending school — has develop into possible, Gomez mentioned. In the meantime, Gomez’s different son, Diego, 15, who has autism, is receiving instructional assist.

Gomez, who’s retired, mentioned it will be inconceivable for him and his spouse to afford these providers themselves. He additionally worries that Medicaid cuts might destabilize the lives of different Latinx households and their kids and undermine progress he believes California has made towards decreasing disparities in entry to Regional Middle providers.

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

Whereas California contributes state funds to Medi-Cal, greater than half of the funding — $98 billion out of $161 billion in Medi-Cal spending — comes from the federal authorities. That makes it tough for the state to backfill any giant federal cuts to this system, well being coverage advocates and price range specialists mentioned.

For now, many organizations and advocacy teams are targeted on making an attempt to keep away from cuts to this system. Some teams are providing steering and trainings for fogeys of kids with particular well being care wants on find out how to share their considerations and Medi-Cal tales with their congressional representatives. Others mentioned they’re connecting straight with these representatives to induce in opposition to cuts.

However, some mentioned California might do extra to arrange for potential modifications to Medicaid. The California Price range and Coverage Middle has advised the state increase company tax charges, get rid of sure tax loopholes, and cut back tax breaks for the rich.

“State leaders really could proactively develop contingency plans and explore solutions to safeguard health care coverage,” mentioned Adriana Ramos-Yamamoto, a senior coverage analyst with the middle. “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 Meeting and Senate well being committees, Assemblymember Mia Bonta and Senator Caroline Menjivar respectively, mentioned they had been each unavailable for interviews. Nonetheless, Assemblymember Bonta’s workplace despatched a written response that mentioned she is “committed to ensuring our communities can continue to access the care they need.”

Pequeño mentioned she’d wish to see extra proof that the California legislature is making an attempt to maintain the cuts from taking place, and needs to know what the state will do to guard kids like Xavier if cuts do go forward.

“What is the backup plan?” she mentioned. “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?’”

Within the meantime, she and her household are attempting to provide you with their very own backup plan. Pequeño mentioned she’s even contemplating taking Xavier to a different nation, similar to 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 mentioned. “No one’s life should be cut short because of the government’s choices.”

This text first appeared on California Well being Report and is republished right here beneath a Inventive Commons license. CHR LOGO SOCIAL%403x 100 PARSELY = { autotrack: false, onload: operate() { PARSELY.beacon.trackPageView({ url: “https://www.calhealthreport.org/2025/03/19/medicaid-cuts-could-upend-lives-of-children-with-disabilities-can-california-do-more-to-prepare/”, urlref: window.location.href }); } }

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Beforehand Printed on calhealthreport.org with Inventive Commons License

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