California adults in need of long-term support programs suffer from lack of access to resources: study

Whether due to age or disability, adults in California who need help with daily activities such as bathing, dressing or transportation to stores and appointments reported poorer health overall and were more likely to have serious mental health problems, according to a new study by the UCLA Center for Health Policy Research.

Severe mental distress includes mental health problems that are severe enough to cause moderate to severe impairment in social, occupational, or school functioning and to require treatment.

Nearly half (46%) of adults in need of long-term care and support services (LTSS) reported their health was “fair” or “poor,” compared to 15% of adults in California overall.

The study also found that adults with unmet LTSS needs experienced severe psychological distress at a rate 50% higher than adults who reported no unmet needs (27% vs. 18%). Unmet needs can include not having access to services or that the services that were provided did not cover everything a person needed.

Other examples of long-term services and supports include assistance with tasks such as housekeeping, nutritional programs, and case management services. LTSS is usually unpaid care provided by family members, friends, and neighbors.

While most people are willing to offer help, it can be a struggle for caregivers who may experience physical, emotional, and financial strain over time. Additionally, in the United States, nearly 25% of adults with disabilities live alone.

“What we learned shows that California needs to improve the way it provides resources to adults who need this kind of help to live independent and healthy lives,” said Kathryn Kietzman, director of the Health Equity Program at the UCLA Center for Health Policy Research (CHPR) and lead author of the study.

Using data from the 2019–2020 California Long-Term Services and Supports Study, a follow-up study to the 2019–2020 California Health Interview Survey, or TO LOOKThe new report provides some of the first insights into the relationship between unmet need for LTSS, access to health care, and health and well-being outcomes among California adults of all ages with LTSS needs.

The report notes that there are an estimated 4.1 million adults in California with LTSS needs. Reasons for the need for LTSS may be related to disability or aging with chronic conditions such as arthritis, heart disease, diabetes, depression or anxiety.

Figuring out how to provide these individuals with the resources they need will only become more important as California’s population ages, the report said. The California Department of Aging estimates that the state’s population over age 60 will increase 166 percent from 2010 to 2060. The population over age 85 will increase 489 percent during the same period.

Other key findings in the report:

• 1 in 5 (21%) adults in need of long-term care and support reported experiencing serious mental health problems in the past month, compared to just 6% of adults in California as a whole.
• A greater proportion of Asian (37%), who identified as “other,” including American Indian or Alaska Native Americans, Native Hawaiians or Pacific Islanders, or two or more races (30%); and Hispanic (22%) adults with LTSS needs reported serious psychological distress compared with White (17%) and Black or African American (16%) adults.
• Among unemployed adults, those with LTSS needs (38%) were almost three times more likely to experience serious mental health problems than those without LTSS needs (14%).
• Among those in employment, 29% of adults with LTSS needs reported experiencing severe psychological distress, compared with 6% of adults without LTSS needs. Balancing work and managing chronic health conditions and/or disabilities can create additional physical or interpersonal barriers that contribute to stress, Kietzman said.

“The racial and ethnic disparities may reflect gaps in the availability of services and programs that are culturally sensitive and available in different languages,” said co-author Lei Chen, a postdoctoral researcher at the UC San Francisco Philip R. Lee Institute for Health Policy Studies and a project policy analyst at the UCLA Center for Health Policy Research.

When looking at how health insurance affects adults with LTSS needs, 38% of those without insurance said they experienced serious mental health problems. For those with Medi-Cal insurance, or eligibility for both Medi-Cal and Medicare, this was 30%, those with private insurance 23%, and those with only Medicare-related public insurance 9%.

More than a third of adults (36%) who did not receive regular medical care reported experiencing serious mental health problems, higher than those who used a community health center (21%) or a privately insured health care source (18%).

“Understanding and responding to the diverse needs of California’s diverse population of older adults and adults with disabilities requires careful attention to data,” said Kietzman, who is also an associate professor in the department of community health sciences at the UCLA Fielding School of Public Health.

“The differences within the LTSS population that emerged in our study clearly show that adults requiring long-term care and support are not a monolithic group.”

The report recommends improving access to LTSS for eligible populations by educating the public about existing programs, improving care coordination, and better linking LTSS recipients to behavioral health services.

The Aging and Disability Resource Connection, or ARDC, and CalAIM are two initiatives that support care efforts. ARDC’s “No Wrong Door System,” designed to prevent users from being sent to different offices in search of the “right” option, coordinates access to a range of culturally and linguistically appropriate services.

CalAIM is designed for individuals who qualify for Medi-Cal. Its goal is to eliminate existing silos between different types of providers that can make access to care inefficient and difficult.

The study’s findings can help policymakers develop programs that better identify who needs LTSS, what kind of services people need, how they can access appropriate care, and how resources are allocated to better meet their needs.

“Out of fairness, we should never accept inequalities as the norm,” Kietzman said.