Access barriers to California’s in-home public health care program are highest for older, disabled and unhoused adults who most need it, a recent study finds.
The report, released by legal advocacy organization Justice in Aging, is based on extensive interviews with over 80 patients, providers, advocates, and state and national policymakers for In-Home Supportive Services (IHSS), California’s largest Home and Community-Based Services (HCBS) program.
HCBS is how Medi-Cal, the state’s version of Medicaid, pays for personal or in-home care, which includes help for older and disabled adults with daily activities like dressing, eating, and cleaning, to keep them living at home rather than in institutions and nursing homes.
Access barriers
“I pray every day that I can kind of remember, because once you get on these services you have to reapply and recertify,” said one patient cited in the study. “I have to stay on top of my Medicaid and any other subsidy I get. I have to literally apply every year. Make sure I have all my information, my bank information, and it’s a lot. It is really a lot.”
“For some individuals (with Alzheimer’s and no family support), when we ask questions, like what (health) plan do you have, or about their finances, they just have a hard time answering some of those questions, so it becomes kind of tricky,” added an IHSS advocate. “How are they going to be able to follow through?”
Over 591,000 Californians get in-home care through IHSS.
There are over 550,000 IHSS providers, or caregivers, as of 2021.
One provider said “If you have to have multiple providers, it’s really like running a small business. You have to hire, train, figure out schedules and sign time cards. It means that you have precluded individuals that have significant psychiatric illness, substance use disorder, or otherwise, high levels of disorganization… It’s just not feasible for a lot of folks.”
According to the report, navigating IHSS is most difficult for adults with behavioral or cognitive conditions like Alzheimer’s and dementia, and adults experiencing or at risk of homelessness.
Patients without a trusted family member or friend willing to be their caregiver often rely on word-of-mouth, or hard-to-navigate county registry lists which require patients to sort through and interview caregivers from a list of hundreds to find a match in terms of skill, location, and availability.
What’s more, many caregivers themselves prefer to work for people needing less/minimal physical or mental health care.
For caregiver retention, IHSS wages “are a problem, but also it’s the level of care,” said a stakeholder. “People don’t mind coming in doing light housework, or… doing your grocery shopping. But it’s that personal care that we worry about the most — that’s where the biggest problem is, you just can’t get a provider to do that. Not for $15 or $20 an hour.”
Across counties, the average hourly wage for an IHSS caregiver is $17.60 as of December 2024.
While data on caregiver retention is scarce, a 2016 analysis found that roughly half of caregiver-patient pairings tracked in a year were ended for reasons other than a change in the patient’s eligibility.
“We have people that have been in our registry actively looking for providers that might go eight months or a year and run through 600 referrals and not hire anybody,” said a county IHSS employment worker. For “people who are experiencing homelessness and connecting them with a provider, it’s a nonstarter.”
These challenges for unhoused people most often owe to the inability to apply for IHSS while moving frequently; being denied an IHSS assessment by the county while living in a shelter; or being unable to get a caregiver while living in a shelter, either because the caregiver isn’t willing to work there or because the shelter isn’t willing to provide access.
“When someone’s in a shelter and needs IHSS, it’s not that it’s impossible, but it’s really tough to find IHSS workers that are willing to support folks in a shelter setting,” explained one caregiver.
Those who can’t access this care face serious harm.
Californians with untreated behavioral health diagnoses including Alzheimer’s or dementia, for instance, account for one-third of all inpatient hospitalizations and one-fifth of ER visits.
Furthermore, in 2022, over half of nursing home residents in California — about 43,000 people — had Alzheimer’s or dementia diagnoses while not receiving the care they needed.
Expanding access
IHSS comes in three forms: Independent Provider Mode, where patients employ a caregiver they choose like a family member, friend or local caregiver, paid through the county; Contract Mode, where counties contract with a local home care agency to employ caregivers; and the currently unused Homemaker Mode, where the county acts as the home care agency.
Independent Provider Mode is the most commonly used; 72 percent of IHSS patients employ family caregivers.
However, nearly everyone interviewed in the study said expanding Contract Mode would help them get the care they needed by reducing the need to personally navigate IHSS to employ a caregiver.
Currently, San Francisco is the only one of California’s 58 counties to use Contract Mode, providing contracted in-home care to 1,100 out of the county’s 27,500 IHSS patients.
Los Angeles County is the only one working to add Contract Mode, specifically for unhoused people unable to access IHSS.
While seven counties including San Francisco tried Contract Mode in the past, six abandoned it by 2018, citing high costs and insufficient federal or state funds.
San Francisco was able to work around these costs by getting additional local and private funding through community organizations whose staff are caregivers contracting with the county; the report recommends that other counties do the same.
Other ways to expand IHSS access for struggling adults include requiring counties to assess unhoused people for IHSS eligibility; assigning county social workers or Medi-Cal staff to help patients fill out IHSS forms and find care providers; and paying caregivers more for high-need cases than low-need.
“It’s more difficult to provide any type of services when somebody is socially unstable, has psychiatric illness and or substance use disorder,” said one provider. “Housing, medical stuff, personal care, everything is harder.”
“If there’s no rate supplement associated with provision of services to this population that has higher needs,” they added. “In effect, there is a penalty paid by that organization for investing those supplemental resources to provide the very same service that you might (provide) more easily to someone else.”
