Shari Horne didn’t have high hopes when her aunt arranged a blind date for her in 1998. But Shari and her date, Hal, ended up falling in love. Now, more than 25 years after they vowed to be there for each other in sickness and in health, Shari’s doing everything she can to make good on that promise. It hasn’t been easy.

At 75, Hal has autonomic neuropathy, a degenerative nerve disorder that renders it impossible at times to speak and remember his way around his home. Shari, 73, has become his full-time caregiver. 

Shari spends much of her day padding around their sunny apartment in Orange County’s Laguna Woods, where she was once mayor and currently serves on the city council. She attends to her official responsibilities when she’s not bathing, feeding or otherwise caring for Hal. There’s a lot of bending and lifting, and the work is round-the-clock, though Shari looks at Hal “as my husband, not as a patient.”

Shari is able to care for Hal in their home because of Medi-Cal, California’s version of the federal health program Medicaid, and Medi-Cal’s In Home Supportive Services (IHSS) program. IHSS essentially pays her to be Hal’s caregiver, earning her about $18 an hour for close to three hours a day. Her monthly check of about $1,500 keeps the couple from running their savings down to 0 and facing financial peril.

Medi-Cal also helps pay for Hal’s medical expenses that Medicare doesn’t cover, and reduces the cost of prescriptions. With help from Medi-Cal’s In Home program, Hal has the option to participate in adult day services, which allow for activities and social opportunities. IHSS also connects Shari to caregiving-training courses. 

Medi-Cal insures a third of Californians, including 2.3 million older adults and people with disabilities. Nearly 1.8 million seniors in California, like Hal, are “dual eligible,” meaning they’re insured by both Medicare and Medi-Cal because they are 65 and older, and either low-income or considered medically needy. 

But Medi-Cal is facing cutbacks mostly because of the Trump Administration’s H.R. 1 Act (also known as the One Big Beautiful Bill Act). H.R. 1 is predicted to cut $30 billion per year in funding to Medi-Cal and introduce stricter eligibility requirements starting in 2027. California has already made a few changes to the program, including limiting the assets enrollees can have and making some immigrants ineligible. While it’s too early to know if the federal cuts will impact Shari and Hal, advocates are concerned that programs like In Home Supportive Services will be on the chopping block, said Tiffany Huyenh-Cho, director of California Medicare & Medicaid advocacy for the nonprofit Justice in Aging. 

“Hundreds of thousands of people receive care at home on that program, including people with disabilities, many over 65,” Huyenh-Cho said.

I’m sharing the Hornes’ story in my inaugural column for the California Health Report. Over the course of the next year, I’ll write about health equity and aging in the Golden State, drawing on my personal experiences, as well as those of the people I interview. I have a long background in reporting on public health for a variety of news outlets, and I teach college journalism students in Orange County. Outside of work, I like reading and being in nature, and I have two grown sons. In recent years, I’ve taken up snorkeling. Somehow, plunging into cold ocean water and gawking at leopard sharks make me feel more alive.

Also, I’m a former cancer patient, and, like some of you, I’m in the later chapters of my life.

As are Shari and Hal, who are able to make the best of their situation with the health benefits they receive now. 

IHSS is funded by a medley of federal, state and county dollars, but if the federal cuts impact in-home services, it’s not clear that state and county funds can fill the gap.

“California is going to face a $30 billion estimated loss in federal funding,” Huyenh-Cho said. “That’s a lot of money the state will have to balance to account for the loss.”

Politicians need to hear from patients and their loved ones who, like Shari and Hal, are crucially dependent on in-home care supported by IHSS. Start by reaching out to the governor’s office and work your way down to county supervisors. And while we are talking about the health options of people like Shari and Hal, isn’t it finally time to talk about making health care a policy imperative in this country? Couldn’t health care be part of the emerging affordability agenda?

Without IHSS, which over half a million Californians are enrolled in, “the cost of private caregiving could run thousands of dollars a month,” Huyenh-Cho said. “You’re going to deplete your savings very quickly. It puts your own future at risk.”

The quality of care is also at risk. If aging Medi-Cal enrollees who need constant care lose their IHSS benefits, more will find themselves in nursing facilities. Shari worries that moving to Hal to a nursing home would be, “totally disastrous!”  

When Hal had a temporary stay in a nursing facility recently, his mental capacity slipped. His befuddlement in an unfamiliar environment was pitiable, Shari remembers. “He would go into the wrong rooms and kept asking for me.” 

Since he came home, she reports, he’s more alert — more himself. “He has some dignity and independence. We all need that to have quality of life.”

“At home, he stays more oriented,” Shari said. “He knows where he is, who he is. He’s better here.” Besides, she’s devoted to making Hal’s life as comfortable as possible. She knows he would do the same for her.

“It’s our last journey together,” she said.

Amy DePaul is a California Health Report columnist who writes about aging and health equity.