Getting your
Trinity Audioplayer ready...On a Friday afternoon in May, Maya Morya Selkie Scott wheeled through her Emeryville apartment, pointing out where her care team provides help: the shower she cannot get in and out of alone and the glitter she cannot sweep off the floor.
The night before, Scott transformed into MerPurrSula and performed in a San Francisco drag show. She had worried she might not be able to go, because sitting in her wheelchair for long stretches has been painful since cancer surgery in March. Still, she went. Dancing in a glittery outfit, she moved freely and fluidly in her chair.
Scott, 60, came to rely on in-home support after leaving an abusive relationship in 2021 and applying for Medi-Cal. Today, her care team helps with daily tasks she cannot do alone, from getting in and out of the shower to cleaning her apartment and reaching food in the refrigerator.
Medi-Cal pays the wages of the queer and trans friends who make up her care team, who work a combined 40 hours a week and help her live more independently.
Scott is among roughly 900,000 disabled Californians and older adults who rely on In-Home Supportive Services, a Medi-Cal program that pays caregivers to help people stay in their homes. Now, the program faces pressure from two directions: the Trump administration plans to defer $1.34 billion in federal matching funds while Gov. Gavin Newsom is proposing state budget changes that advocates say would shrink access and shift new costs to counties.
The Trump administration says California’s Medicaid system is rife with fraud because the state’s spending outpaces other states. Some of that money helps cover in-home care.
Condemning the move, Newsom posted on X that California spends more because it keeps more people in their homes and out of more costly nursing homes. It’s unclear if the state will go to court to fight for the money, as Minnesota did earlier this year.
But Newsom’s public support for the program doesn’t mean he is sparing it from cuts. In his May budget proposal, the governor freezes state payments at current levels, shifting any new costs to counties. His plan also would make fewer people eligible by lowering the asset limit for recipients from $130,000 to $2,000 in cash, savings and other resources.
Last week, people who depend on the system — including parents of children with disabilities, blind and deaf advocates, wheelchair users and older Californians — told their stories at a rally at the state Capitol in a bid to keep the funds flowing.
“Aging is just another word for living,” read one protest sign, affixed to a wheelchair.
“No, we are not burdens,” said Brittanie Hernandez-Wilson, an organizer with Hand in Hand: The Domestic Employers Network. “No, we are not frauds. No, we are not the problem.”
Keeping people in their homes provides independence and is more affordable than nursing home care, said Hagar Dickman, a senior attorney at Justice in Aging.
According to the California Department of Health Care Services, in-home support costs roughly $30,000 per person per year, compared with about $137,000 for institutional care.
While the program saves money compared with nursing homes, its budget is expected to grow as the state’s senior population continues to balloon. Under Newsom’s proposal, advocates estimate counties would pick up approximately $233 million in new costs as demand for the program grows.
But cash-strapped counties have little incentive to expand services, said Sylvie Yee, public policy director for Disability Rights Education & Defense Fund.
People with chronic conditions and disabilities tend to need more services over time, Yee said. Counties may not be able to provide that.
Back in Emeryville, Scott’s living room is an archive of disability justice activism. A quilt, part of a community project she has been involved in, hangs above her sofa, each panel stitched with a different disabled person’s story.
At 60, she is an elder in disability justice communities, a fact she does not take lightly, given how many people she has lost.
“I am a miracle that I’m still alive,” she said. “And I deserve to age with care and dignity and support, just as much as anybody else.”
Hyeyoon Cho is a writer with the Investigative Reporting Program at the UC Berkeley Graduate School of Journalism. She covered this story through a grant from The SCAN Foundation.