Luca-Amine Hadir was 4 days old when his parents raced him to the ER.
His mother, Jill McDonald, had wanted her child to have a gentle transition into the world, and Luca’s first four days were just that. He was born at home in San Francisco’s Bernal Heights neighborhood, in spring 2020 — Jill, now 46, described his birth as “unremarkable.” She and Luca’s father, Najib Hadir, basked in the glow of newfound parenthood, imagining his first words and first steps, high school graduation and world travels.
“I expected that I would have a kiddo and keep doing all the things that I had done before and just take him with me,” Jill said. “But life has turned out so differently.”
Luca’s peaceful introduction to the world was short-lived. By his fourth day, he wasn’t feeding well, and his parents took him to the hospital. He had his first dramatic seizure in the emergency room.
Days later, they would learn Luca had suffered a brain injury, perhaps a stroke before or shortly after birth. He was diagnosed with epilepsy. When the epilepsy didn’t respond to medications, he underwent a 16-hour brain surgery at just 18 months old, which lessened the frequency and severity of seizures but did not stop them. And he’d already suffered permanent brain damage.
Luca is 5 now, and will require full-time care for the rest of his life.
Like millions of American parents with profoundly disabled children, Jill has come to rely on federal, state and local support programs to make their life manageable in the small Sonoma County community where she now lives with her son. The resources allow Jill to care for Luca and keep him home.
That support is fragile, though, and vulnerable to the whims of federal politics. At the moment Jill’s income situation feels stable, she said. She tries not to worry overly much about the national political climate and threats to Luca’s care, because it’s not something she can control.
Billions of dollar in federal reductions to Medicaid, prescribed under President Donald Trump’s “Big Beautiful Bill,” will begin taking effect this fall. Though states like California may make up for the bulk of the cuts through state funding, it’s unclear what the impact will be on families like Jill and Luca’s.
Many families are bracing for the worst — cuts that will dramatically impact their ability to care for their children beyond their most basic needs. Many more families are in a state of flux, uncertain what resources will, or will not, be available to them in just a few weeks and therefore unable to prepare.
“Luca has a profound enough disability that I think he will always be taken care of,” said Jill, talking to a reporter in her rented home on the outskirts of Sebastopol, where the family moved a year and a half ago. “But I’m of a certain mindset that we take care of our most vulnerable people, and I don’t know if that’s in alignment with our current administration.
“But I try not to go down that rabbit hole,” Jill said. “I try not to think about it too much, because if I did, I could worry a lot.”
A daily balancing act
Luca arrived home from school one afternoon this August with Dani Anderlini, a family friend and special educator who helps out three days a week. He made a beeline for the foam mat on the living room floor, where pictures of animals, arranged in a colorful patchwork of squares, helped him learn the alphabet.
“One whale,” Luca said to Anderlini, pointing to a square with a purple whale and the letter “W.” She nodded, and Luca ran across the mat to point to an identical square. “Two whales.”
“Can you find the unicorn?” Anderlini asked. Luca paused, then ran back across the mat to the first purple square.
“One whale,” he said again, a wide grin on his face, then ran back across the mat to the other purple square. “Two whales.”
The whale routine is a common one for him and Anderlini, who helps Luca with speech therapy, as well as life skills such as bathing and feeding himself.
Anderlini is part of a complex patchwork of caregivers, medical professionals and nonprofit supporters that Jill has assembled over the past five years to enable Luca to live at home, including a crowdfunding effort launched by a family friend. Medicaid was the final piece for Jill, who learned about a year ago that it was an option for them.
Luca qualifies for two Medicaid programs: IHSS (In-Home Supportive Services) and HCBA (Home and Community Based Alternatives). Jill receives a monthly check as Luca’s caregiver from In-Home Supportive Services, and that’s her primary income: She uses it to help cover rent and groceries, as well as to pay for extra help with Luca on weekends. She’s still working out how to get support through Home and Community Based Alternatives.
Before getting federal support, Jill and Najib worked full-time jobs in San Francisco, trading off shifts with Luca at the hospital and fitting in medical appointments around their meeting schedules. When the family moved to Sebastopol, Jill and Najib continued to trade off the two-hour commute to work.
But the burden of full-time caregiving and full-time work took its toll. Najib no longer lives with Jill and Luca, and Jill is the primary caregiver. Jill took a break from working last summer and now is doing part-time contract work in marketing. Najib lives nearby; he helps financially and sees Luca about every other weekend.
Before the brain surgery, Luca probably was enduring multiple small but damaging seizures every day, doctors told his parents. He no longer has daily seizures, but he has epilepsy that does not respond to medications, which means he still has seizures, sometimes very bad ones. They often strike at night, so Jill has to sleep in her son’s bed so she’ll be nearby if he wakes up seizing.
Twice since they moved to Sonoma County, Jill has called 911 when he seized, drawing paramedics from the fire station up the road from their home. But they haven’t been able to do anything for Luca that Jill can’t do herself, so usually she waits it out with him alone.
Luca has weakness on his right side from the brain injury, including the surgery. He’s also lost all right-side vision in both eyes, though he can see to the left and is able to adapt to his surroundings reasonably well, Jill said.
At home, Luca doesn’t feed, bathe or clothe himself. When she takes him places, meltdowns are common. He’s also been diagnosed with autism.
It’s the epilepsy that scares her, though. She worries a seizure could kill him, or further disable him. More than once, when Luca was gripped in a seizure, Jill described a feeling of surrender as she wondered whether this would be it, if he would finally let go.
“His brain gets very overwhelmed. He has a lot of sensory processing difficulties and vision impairment and seizures. Sometimes I can tell that he struggles and struggles,” Jill said. “But then when I see him at school, he’s bright and vibrant and they all love him. He’s still happy.”
Cuts that hit home
The comprehensive budget policy bill that Trump signed into law this year calls for about $1 trillion in cuts to federal Medicaid over the next decade. Medicaid is the primary program providing support to older adults and people with disabilities who need nursing or home care. About 4.5 million Americans receive Medicaid home care services each year.
Federal health officials say the Medicaid cuts won’t impact services for families that rely on it. But state and local experts in coverage say there almost certainly will be cuts, and how they impact families will depend in part on how able and willing states are to pick up the difference.
The results could include less money to individual families for care, more rigorous standards for accessing services, or income cutoffs that make some families ineligible.
Anna Leach-Proffer, managing attorney for health care and home- and community-based services with Disability Rights California, said many voters, and even elected officials, are not aware how devastating federal cuts could be to families like Jill’s.
“Nobody, as far right as you can get, is going to come out and say they want to cut services for a medically fragile child,” Leach-Proffer said. “I think it’s more that people don’t realize these are Medicaid programs.”
Leach-Proffer said she’s had to “educate” elected officials on just how important these programs are. “I know you don’t want to stand in front of your constituents and say this child does not deserve to live with their family,” she’ll tell them.
She’s been through similar scenarios before, Leach-Proffer said. In 2008, she was part of Disability Rights California when the state saw a 7% reduction across the board for those with significant care needs during the housing crash. But this time around, she said, feels even more impactful.
“On some level, I want to say, ‘Don’t be too worried. We’ve been through this before,’” Leach-Proffer said. “But at the same time, it’s a much bigger loss of funding, even than we dealt with in 2008.”
California’s general fund “is not going to be big enough to make up the difference,” Leach-Proffer said. “The cuts are going to have to come from somewhere.”
Finding strength in community
Luca goes to school nearby for five hours every weekday morning, and Anderlini spends time with him three afternoons a week. On Fridays, he visits a local farm with another child. Jill and Luca also attend events through Common Ground Society, a group for families with children with high needs, and on weekends, Jill hires another aide to spend a few hours with Luca so she can get chores done or spend a little time alone.
“It’s not always me and him — that would not be good for Luca, and it would not be good for me,” Jill said.
The trauma of her child’s medical crisis and years of fearing for his life, plus caring for him around the clock, has left Jill exhausted and burned out. Last month she was able to take a few days to herself to go to Burning Man for the first time since Luca was born, indulging in creative arts and time with friends and other adults. It was invigorating but a short-lived breather.
“I’m really trying to move through the grief and sadness now,” Jill said. She is still grieving the loss of expectations — what she thought motherhood might be, the life she imagined for her son and their family. And yet, “I don’t want to bear the loss of someone who’s still here,” she said, “so I’ve just really had to learn how to accept him for who he is.”
Jill is more cognizant than ever, she said, of the value of community and support systems like Medicaid. And that is at the heart of what she wants for her son: a life with friends and laughter and love.
“The way that I see my kid is probably the way you see your kid,” Jill said. “I don’t think there’s a difference. I think all parents love their kids in the same way, no matter if they have disabilities or not. I think the love for a child knows no bounds.”
Jill loves her son, and she wants to care for him at home as long as she can.
“He’s taught me that it’s not about how long you’re with someone,” Jill said, “it’s about the impact that they have upon you. He’s taught me to be really gentle with people, because everyone’s struggling. Especially now in the world.”
One August evening, as the light faded from the windows of their home, Jill and Luca climbed into the bed they share. Jill reminded Luca of everyone who loves him — a daily routine that’s come to anchor their evenings together.
Then they pulled out Luca’s favorite book: “Oh, the Places You’ll Go” by Dr. Seuss. Luca has it memorized.
“I’m sorry to say so, but sadly it’s true, that Bang-ups and Hang-ups can happen to you,” Jill read. “Step with care and great tact and remember that Life’s a Great Balancing Act.”
Luca listened, holding Jill’s hand. He climbed over her as he tried to get comfortable.
“And will you succeed? Yes! You will, indeed!” Jill read. “KID, YOU’LL MOVE MOUNTAINS!”
Jill flipped to the last page, and Luca lay down beside her. “Your mountain is waiting. So… get on your way!”
She closed the book, and they fell asleep, intertwined.