Three weeks after her 84-year-old mother entered a skilled nursing facility for rehabilitation from a serious fall Carmen Brammer received a call.
“Come get your mother,” Brammer recalled a staff member telling her. “We’re going to put her on the curb if you don’t come get her.”
Even though her mother, Pauline Brammer, had had some rehabilitation, she still couldn’t walk or care for herself by cooking, bathing or cleaning the house. Brammer and her sister wanted to help, but they both had full-time jobs. Brammer picked her mother up from the nursing facility, but she didn’t know what to do next.
“In my culture it is so important to treat your elders with love and respect and keep them at home as long as you can,” said Brammer, whose family is originally from Guyana. But given her mother’s level of need, “you can’t just part-time that, there’s no way.”
Most older adults want to stay in their homes and communities as they age, rather than go to a nursing home or assisted living facility. To do that, many eventually need assistance with routine care such as house cleaning, shopping and getting to medical appointments, and personal care such as bathing, dressing and eating.
Some have family members willing to step in and help (although that can be costly and time consuming for the relatives involved). Other older adults get caregiving support through the state’s Medi-Cal health insurance program for low-income people, or services such as meal delivery or transportation help from community-based programs. But 40 percent of older adults and adults with disabilities in California who need help to stay in their homes report receiving either no help at all or not enough, according to surveys conducted by the UCLA Center for Health Policy Research.
Demand for long-term caregiving at home is highest among certain racial and ethnic groups, the study found, although the need was high across all groups. Almost 74 percent of Black respondents in the study and 72 percent of those identifying as multiracial reported needing help with routine care, compared to 55 percent overall. And almost 40 percent of Black respondents reported needing help with personal care compared to 20 percent overall. The study doesn’t break down the extent to which each group was receiving that help.
Latinx, Asian and Native Americans survey participants were less likely than white respondents to report needing help with routine or personal care, although their level of need remained high. Around 45 percent of people in each of those categories reported needing help with routine care, compared to 57 percent of white respondents. Of survey respondents, 17 percent who identified as Latinx, 9.5 percent who identified as Asian and 12 percent who identified as Native Americans reported needing help with personal care, compared to 22 percent of white respondents.
It’s not clear why these disparities exist. Experts pointed to a range of factors that could explain the high rates of need among Black and mixed-race respondents, including historical and social inequities that put people of color more at risk for health problems as they age. Some populations may also have more difficulty accessing care because of language and cultural barriers, geographic differences in what type of help is available, caregiver shortages, mistrust of the social services and health care systems, and bias or racism from providers within those systems that lead to people of color not receiving adequate support, they said.
More generally, lack of health insurance coverage for long-term services, along with insufficient coordination and funding for the programs that do exist has made accessing and affording in-home care challenging for most Californians, experts said.
“The level of unmet need is pretty staggering,” Kathryn G. Kietzman, the lead study author, said in an interview. “There’s a big void in what is available to folks.”
California is making efforts to rectify the problem. Last year, the state released its first-ever Master Plan for Aging, a 10-year blueprint for promoting healthy aging that includes provisions for improving access to home and community-based services and bolstering the caregiving workforce. The legislature has also created a Long Term Care Insurance Task Force to explore the feasibility of creating a statewide insurance program for long-term care services, most likely through a payroll tax. And recent changes to Medi-Cal will make more older adults eligible for caregiving services at home and in the community by lifting asset limits and making it available to undocumented people ages 50 and older.
Experts and advocates applauded these moves but said more must be done — more quickly — to meet the long-term care needs of California’s rapidly aging population, particularly in communities of color. Almost 1 in 5 Californians will be 65 or older by 2030, up from about 1 in 7 today. The fastest growth will be among older adults of color, with the Latinx elder population growing by 118 percent, Asian by 61 percent and African American by 90 percent by 2030 compared to 2016 levels.
“We really don’t have time to sit back and wait any longer in order to have a robust network of supports available,” Kietzman said, noting that the issue affects “our communities, our households, our immediate family members.”
Blindsided by the system
After her mother’s fall in 2016, Brammer, like many people, assumed Medicare — the federal health insurance program for older adults — covered long-term caregiving. It doesn’t. Neither do most private health insurance plans.
“Nobody tells you these things,” said Brammer. “It’s not until you hit that hurdle.”
A social worker at the hospital advised Brammer to sign her mother up for Medi-Cal. Medi-Cal does pay for some in-home and community-based care (as well as nursing home stays) but mainly for very low-income people. To qualify, a person’s annual income cannot exceed $18,755, or 138 percent of the federal poverty limit. People whose incomes exceed this may be able to get Medi-Cal coverage after they’ve spent all but $600 of their monthly incomes on health care, a widely criticized process referred to as “share of cost.” This limit is now set to change, but not until 2025. Brammer’s mother made $100 above the income limit, which meant she’d have to pay about $800 toward her care before getting any help.
It took Brammer eight months to get her mother approved for Medi-Cal, which she described as an arduous process involving multiple requests for documents. When the approval finally came her mother no longer needed in-home care and Brammer and her sister had already spent $20,000 out-of-pocket for a caregiver. Medi-Cal only authorized nine hours of caregiving a week, far less than her mother would have needed in the weeks following her fall.
Brammer now works for the California Black Health Network, a statewide advocacy group. She said Californians need more information about how to prepare for long-term care needs as they age, and guidance on how to access programs such as Medi-Cal. Additionally, the state should hire more people to process applications for Medi-Cal and related programs so older adults don’t languish for months without support.
Brammer said she also believes racism contributes to disparities in who gets care. Black people are often wary of the health and social services system because they’ve been treated badly in the past, she said. And some providers have biased attitudes toward people of color, or assume they don’t need or deserve help.
“You’re just kind of put out there,” she said. Patients and their families are effectively told to “go figure it out,” on their own, Brammer explained.
Brammer said she worries about the people who, unlike her mother, don’t have family members who can support them.
“If they have to wait eight months like we did to get the support, what happens to them? What do they do for eight months?” she said. “It hurts my heart.”
Some people who are eligible for help don’t even realize it. When Janet Perez of Oxnard decided to quit her job to take care of her now 74-year-old mother in 2019, she didn’t know that getting help through Medi-Cal was an option.
At first, she relied on handouts from other family members. It was only after she reached a breaking point and contacted the Alzheimer’s Association for assistance that Perez found out she could get paid to care for her mother through a program called In Home Supportive Services. The program, available for people enrolled in Medi-Cal, pays minimum wage to either a family member or outside caregiver ($15 per hour statewide, or higher if the county has its own minimum wage). It didn’t replace Perez’ previous income or make up for her lost career advancement, but it allowed her to stay afloat while she continued to care for her mother over the next three years.
“I think lack of promotion of these services is really, really an issue,” she said. “So many people don’t know about this stuff and are just processing losing their loved ones and are not getting the support.”
However, many people don’t qualify for any help. Nina Weiler-Harwell, an associate director for advocacy and community engagement at AARP in California said people with moderate incomes who make too much to qualify for Medi-Cal are particularly hard hit. Although it’s possible to purchase private, long-term care insurance, it’s very expensive and often excludes pre-existing conditions. Only about 4 percent of Californians have this type of insurance, she said.
“For a lot of people (who need long-term care) either they have to spend down their own savings or they have to rely on a family caregiver to either provide care and/or spend whatever money they have to provide that care,” Weiler-Harwell said.
‘There’s more to be done’
Guided by the new Master Plan on Aging, California is working on several initiatives to improve support for older adults. In an email, Connie Nakano, assistant director for communications at the California Department of Aging, said the state is in the beginning stages of creating a hotline to assist older adults, people with disabilities, and caregivers with finding and obtaining resources. It’s also creating a website with streamlined information about the array of services available to older adults. California has also invested over $2.5 billion dollars in training and incentives to build up its health care workforce, including those working in direct home and community-based care for older adults.
Meanwhile, California’s efforts to create a public long-term care insurance option, most likely through a payroll tax, could be a game-changer for the state and inspire similar solutions in other parts of the country, Weiler-Harwell said. A feasibility study is set to be released later this year.
Hagar Dickman, a senior attorney at Justice in Aging, applauded recent legislative changes that will help more older adults qualify for Medi-Cal, including the expansion in May to undocumented people ages 50 and older, and the phasing out of a $2,000 asset limit for older adults to qualify for Medi-Cal. These changes are expected to allow at least 18,000 more people to qualify for Medi-Cal.
But challenges remain, she said. Federal policies underlying Medi-Cal have resulted in a dearth of funding for home and community-based services, and uneven availability across counties. There’s also a workforce shortage. This means even people eligible for services often can’t find them or are put on waiting lists. New efforts to collect data on gaps in service could help, she said, along with California’s move to reform its Medi-Cal program under a process called CalAIM.
“California’s doing a lot,” Dickman said. “I think there’s more to be done.”
Carmen Brammer continues to struggle to get her mother the care she needs. Now age 90 and diagnosed with dementia, Pauline Brammer can no longer live at home. Carmen Brammer and her sister considered putting their mother in a memory-care facility that specializes in dementia, but that’s not covered by Medicare or Medi-Cal and would cost them around $9,000 a month. So she’s now in a skilled nursing facility covered by Medi-Cal.
California’s plan to establish a public long-term care insurance option can’t come soon enough, Brammer said.
“I would sign up in a heartbeat,” she said.