Care in the I.E.: Navigating California’s In-home Care and Caregiver Support

Overview: In-home care has become a pressing need for the aging population, but navigating what health insurance covers, including support for caregivers, remains complicated. California’s offerings span private insurance, Medicare, and Medi-Cal, each providing varying coverage for patients and caregivers. Health insurance policies vary widely, and coverage often depends on the patient’s condition, the specifics of their plan, and what the insurer deems necessary to recovery or the patient’s condition. Medicare and Medi-Cal offer limited coverage for in-home care, and when coverage runs out, patients may have to explore alternative funding or self-payment.

Mariah Brown 

When Anthony Perez needs to see a doctor, his mother, Sheri, faces a daunting challenge. “He’s non-verbal, and getting him to a doctor is like pulling teeth,” she explains, recalling times her 37-year-old son, who has cerebral palsy, autism, and other developmental challenges, has refused to enter the building. Sheri, 67, often pleads with staff for a solution, but few doctors are willing to step outside, and with telehealth not viable due to his condition, care remains difficult to access.

Through California’s In-Home Supportive Services (IHSS) program, Sheri receives financial support to care for Anthony at home. IHSS covers the essentials Social Security misses. “Incontinence supplies, for example—they’re not covered, and getting a prescription requires a doctor’s visit,” she says. 

As the aging population grows, in-home care has become a pressing need, yet navigating what health insurance covers, including support for caregivers, remains complicated. California’s offerings span private insurance, Medicare, and Medi-Cal, each providing varying coverage for patients and caregivers. Here’s a breakdown of what types of in-home care these plans offer, the limitations, and the options available when coverage runs out.

What Types of In-Home Care Are Covered by Health Insurance?

Health insurance policies vary widely. Many private insurers cover in-home health care when it is deemed medically necessary, often including skilled nursing, physical therapy, and sometimes personal care. However, coverage often depends on the patient’s condition, the specifics of their plan, and what the insurer deems necessary to recovery or the patient’s condition.

Medicare, the federal health insurance program primarily for individuals 65 and older, also covers certain in-home care services under specific conditions. Medicare Part A covers in-home hospice care for patients with a terminal illness, while Part B offers limited in-home health services, like skilled nursing and therapy, if prescribed by a doctor and deemed medically necessary. Yet, Medicare does not cover long-term custodial or personal care if it is the only type of care needed, according to a representative from the California Department of Health Care Services. 

For Californians on California’s Medicaid program, Medi-Cal, coverage includes a range of in-home services. Through both the fee-for-service and managed care systems, Medi-Cal offers home health services, dialysis, personal care services, and hospice care when prescribed by a physician and deemed medically necessary. For children and youth under 21, the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit provides additional services, such as private-duty nursing, if more intensive care is required.

Limitations on In-Home Care Coverage

Most health insurance plans impose limits on in-home care, particularly for ongoing support services. Private insurers often set maximums on the number of in-home visits or hours of care. Medicare’s coverage is restricted to part-time or intermittent care, and once coverage limits are reached, patients may need to explore alternative funding or pay out-of-pocket, 

In contrast, Medi-Cal offers more extended support options but has restrictions based on medical necessity and care needs. For example, personal care services for those with chronic disabilities are capped at 283 hours per month, and hospice care is restricted to patients with a physician’s determination of six months or less to live, extendable in 60-day increments as necessary. Medi-Cal also provides waiver programs, like the Home and Community-Based Alternatives (HCBA) waiver, to support individuals at risk of institutionalization, which helps expand the scope of long-term in-home care when eligibility requirements are met.

When Coverage Runs Out: Options for Continued Care

When insurance limits are reached, patients who still need in-home care face tough decisions. Private insurers typically end coverage when policy-defined limits are met, and patients must consider self-payment, state aid, or alternative programs. For Medicare recipients, if coverage runs out, they can seek assistance through programs like Medicaid or non-profit organizations, though these may have strict eligibility requirements.

Medi-Cal offers some flexibility. For patients under 21, there are no preset limits on private-duty nursing, and continued support can be approved based on medical need. For adults, Medi-Cal’s HCBA waiver and Home and Community-Based Services (HCBS) programs offer options to extend care. These waivers enable individuals who meet eligibility criteria to remain at home with comprehensive support services, evade placement in a nursing facility.

“These programs often include personal care assistance, private duty nursing, and respite care, all crucial support for family caregivers,” said Jason Lee, CEO of the Home Care Association of America. “Eligibility, however, depends on meeting specific financial and medical criteria.”

Coverage and Support for Caregivers

While primary insurance policies focus on patient care, support for family caregivers is low. Traditional health insurance policies, including Medicare, offer  limited assistance for caregivers. For example, Medicare does not directly cover respite care for caregivers, except in certain hospice situations. However, Medi-Cal offers caregiver support under several waiver programs. For example, the IHSS program and HCBA waiver programs reimburse eligible family members for services such as unskilled personal care and respite, if they qualify. 

For California’s developmental disability community, the HCBS-DD waiver and the Self-Determination Program (SDP) allow caregiver support through services like homemaker and respite care. Regional Centers coordinate these services, assisting caregivers in providing sustained care within their communities.

Medi-Cal’s In-Home Care: Eligibility and Services

Medi-Cal’s coverage of in-home care includes multiple programs with their own specific eligibility requirements and service provisions.

Medi-Cal provides different in-home services to aid members with critical health needs. For those in need of skilled nursing, therapy, or medical social services, coverage is available when prescribed by a doctor. Members with end-stage renal disease can receive home dialysis up to 31 days per month. Individuals with chronic, disabling conditions expected to last over 12 months may access personal care services to assist with daily activities, helping them remain independent and avoid institutional care. For members with a prognosis of six months or less, hospice care is also available, including crisis support when needed.

Medi-Cal also has waiver programs that extend beyond the basic plan, supporting those who are either transitioning from institutional care or at risk of nursing home placement. Programs like the Multipurpose Senior Services Program (MSSP) offer services such as adult day care, transportation, and housing assistance to help older adults stay in their homes.

Henrene Barris is an IHSS provider who lives near a senior housing apartment building, where she starts and ends her days caring for multiple residents. She’s been a caregiver since 2010, even caring for multigenerational clients. “You become a real advocate for the person,” Barris said. “You’re their eyes and ears, making sure they get the best healthcare possible.”

As a long-time caregiver in San Bernardino, Barris sees disparities in access to resources and awareness about in-home care options for aging communities of color. “They’re often unaware there are resources for in-home healthcare,” Barris explained. “They don’t need to go to a facility—they can have someone other than family care for them.”

To address this, she actively shares information about available resources within the senior community, helps recruit in-home care workers and hosts orientations through SEIU2015 and San Bernardino County, which administers the program. 

Herene Barris is an 82-year-old advocate for in-home caregiving in San Bernardino County. She has been a caregiver since 2010. (source: courtesy)

Care Continuity for Californians Facing Coverage Gaps

For families relying on Medi-Cal, coverage often adapts as needs evolve, especially for younger members or those eligible for specific in-home programs. The EPSDT benefit allows continuous in-home support for youth under 21, while HCBS programs permit extended care if the individual remains eligible. For those who exhaust coverage but still require support, Medi-Cal’s waiver programs often bridge the gap, ensuring care continues.

The Program of All-Inclusive Care for the Elderly (PACE) is another option available to seniors at risk of nursing home placement. This health plan provides all necessary in-home care and medical services under a team-based approach to keep older adults in their homes for as long as possible.

A clear understanding of in-home care coverage—from private insurance to Medicare and Medi-Cal—is important for patients and caregivers navigating California’s health system. While coverage limits and caps remain, programs like Medi-Cal’s waiver services provide resources allowing many Californians to receive necessary care at home. 

For caregivers, a range of support programs can help sustain care, offering assistance when traditional insurance coverage is limited. Despite the obstacles to get care for Anthony, Sheri is steadfast in her commitment. “I would care for him either way,” Sheri said. “It is nice to stay home and take care of him with my pay through IHSS.”

This article is part of the 2024 Black Voice News reporting series on Caregiving in the IE supported in part by the United Domestic Workers of America representing home care and family child care providers across the state of California