‘I’d Be Left Alone’: Medicaid Cuts Put Disabled Patients’ In-Home Care at Risk

Emma Denice Milligan can be a prankster. Her warm eyes, big smile and wheelchair can be misleading, said her caregiver, Wanda Kincy. But Emma once crashed a wedding and helped herself to the food. Another time, she put herself on a plane from Oakland to Chicago to meet her high school sweetheart without telling her caregivers.

Kincy points two fingers at her own eyes and then at Milligan’s. “I know you,” she said with a grin.

Kincy arrives at the Oakland home Milligan shares with her aunt and uncle at 8 a.m., five days a week, staying until at least 10 p.m. and overnight on Thursdays and Fridays. She helps Milligan, 57, get dressed, bathed and ready for her adult day program. Kincy books Milligan’s paratransit rides, times medication reminders and keeps track of the small details that make her independence possible.

The care Kincy provides is covered through California’s Medicaid program, also known as Medi-Cal. Federal cuts have many advocates worried about the future of such care.

Under federal law, most home- and community-based services are optional benefits, meaning states can choose whether to include services like personal care in their Medicaid plans and how broadly to offer them.

In California, Medicaid covers in-home supportive services to Californians who are elderly, blind or disabled and would otherwise be at risk of nursing home placement. The federal government reimburses California for about half of the cost of IHSS.

In-home services enable Milligan’s family to hire Kincy to assist with daily personal care and household tasks so Milligan can remain safely in her family home.

“If I lose Wanda, then I would probably have to go to a facility,” she said. “People at the facility don’t care. I would be calling them for help, and they wouldn’t come. I’d be left alone and be wet all night, because I can’t go to the bathroom.”

Milligan has received IHSS on and off while living in both California and Chicago. In 2011, she moved to Oakland and has relied on the program continuously since. But there is a growing concern about how long the services can last.

In July, Congress approved roughly $1 trillion in Medicaid cuts over the next decade, beginning in 2026. Because the federal government pays roughly 54% of California’s total home- and community-based services costs, the impending cuts immediately raised alarm.

The White House has said the budget package would not affect Medicaid coverage for people with disabilities. Advocates warn the changes will nonetheless fall heavily on home- and community-based services, which aren’t protected like nursing home services. They say optional services are often the first to be reduced.

Hagar Dickman, a senior attorney at Justice in Aging, said the risk to in-home services is not theoretical. During last year’s state budget negotiations, she said, Gov. Gavin Newsom’s administration initially looked to IHSS as one of the first areas to cut when facing a projected shortfall.

“In the May budget revision, home- and community-based services were immediately on the table,” Dickman said.

The budget proposed over $1 billion in mostly ongoing cuts to in-home supportive services, including limits on provider pay and hours and the elimination of benefits for certain groups. Although this was not adopted in the final budget, the plan for freezing Medi-Cal enrollment and ending IHSS eligibility for undocumented adults was adopted and is set to begin in 2026.

Dickman said this episode underscored how quickly optional services can be targeted.

“When states are under pressure, they go after HCBS [home- and community-based services] first because they’re optional under federal law,” she said.

Congress has agreed to restructure Medicaid by reducing the federal government’s share of reimbursements, restricting how states raise Medicaid revenue and imposing new eligibility checks, work requirements and exclusions for certain immigrant groups.

A recent analysis by the California Health Care Foundation suggests the consequences could be costly. If the state reduces HCBS by 10% in response to federal cuts, California could face roughly $1 billion in added Medicaid expenses as more residents are moved into institutional settings.

“The federal Medicaid cuts are an absolute disaster for HCBS,” said Sabrina Epstein, a policy analyst at Disability Rights California. She said the cuts will push many people off Medicaid, leaving them without access to the only program that funds round-the-clock in-home support.

“People will be forced into nursing homes or left to rely on unpaid family care,” Epstein said.

During the Great Recession, the federal government gave states more money for Medicaid. Researchers at UCSF and the Disability Rights Education and Defense Fund examined what happened when Congress ended enhanced federal Medicaid funding to states between 2010 and 2012.

Every state responded by cutting home- and community-based services in some way — reducing benefits, the number of people covered, or both. Waiting lists for home care grew across the country.

California will not be able to absorb the loss if federal Medicaid cuts take effect in 2026, said Mike Pereira, executive director of Ala Costa Centers in Berkeley, which offers adult day services to people with developmental disabilities.

“We’re all bracing,” he said. “We’re watching the sand run out of the hourglass.”

Round-the-clock care

Milligan’s bedroom is crowded but intentional. A metal lift helps get her out of bed. A tray table holds adaptive cups and utensils. Framed photographs line the walls: Emma smiling at family gatherings, dressed up for celebrations, captured at different points in her life. One large portrait shows her late mother smiling for the camera.

Milligan’s uncle, Austin Long-Scott, is in his 80s and has Parkinson’s disease, which has increasingly limited what he can physically do. His wife, Ethel, is also in her 80s and not able to do as much as she used to do for Milligan.

“We used to stay with her 24/7,” Austin Long-Scott said. “We can’t do that anymore.”

In October, Milligan had a setback, spending weeks in the hospital as doctors struggled to manage severe chest and stomach pain. Kincy often stayed with her, helping communicate with nurses and doctors, monitoring pain levels and watching for changes.

Without IHSS, Long-Scott said, their options would be grim. Paying out of pocket to retain Kincy would be financially overwhelming.

Without a caregiver, Milligan would not be able to speak at churches and community organizations about disability justice or connect domestic violence survivors with resources, advocacy that she’s been committed to for more than a decade.

Kincy reads the statements Milligan writes and facilitates questions from the audience. Their coordination allows Milligan to remain active in her community.

“The two of them just bonded,” Long-Scott said. “It was almost instant.”

In the afternoons, Milligan attends Ability Now Bay Area, a center for people with disabilities. There, she is developing a business idea on adaptive clothing, which grew out of her daily care needs. She wants to design garments secured with snaps, magnets or velcro — clothing that can be put on and taken off with minimal movement.

Fridays leave small joys for Milligan: browsing with Kincy at Macy’s Backstage in Pleasanton or getting dumplings in Alameda. Recently, at an outlet store in Berkeley, Kincy used her charms to talk a cashier into reducing the price of a new jacket for Milligan by 15%. They were thrilled about the bargain.

Milligan appreciates Kincy and the programs that enable her to remain vibrant in her community. “People I meet at Ability Now and the community around me understand me. They can relate,” she said. “Wanda and I always crack up when we’re there. They bring a lot of joy.”

This story is part of “The Stakes,” a UC Berkeley Journalism project on executive orders and actions affecting Californians and their communities.