For many older adults, people with disabilities, and others who require ongoing medical or personal assistance, long-term services and supports (LTSS) are essential for living independently and carrying out everyday activities. These services, which include help with bathing, dressing, preparing meals, transportation, and other daily needs, allow millions of people to live as independently as possible.

According to a new study from the University of Minnesota School of Public Health (SPH), many people using publicly funded LTSS programs aren’t getting all the care they need, leading to reduced community participation and lower satisfaction with how they spend their day-to-day lives.

To conduct the study, researchers analyzed survey data from more than 61,000 adults receiving publicly funded LTSS in 27 states. They reviewed data from a nationally representative sample of adults receiving publicly funded LTSS in their homes, assisted living facilities, and nursing homes. Researchers examined whether participants felt their services met their needs and goals and how those responses related to measures of quality of life, including community participation and satisfaction with daily activities.

The study, published in the Journal of the American Geriatrics Society, found:

• Nearly one-third of participants reported unmet service needs. About 29% of adults receiving publicly funded LTSS said the services they received did not fully meet their needs and goals.
• Unmet needs were linked to lower quality of life. Participants whose needs were not fully met were significantly less likely to report being active in their communities or satisfied with how they spent their day.
• The type of long-term care program mattered. Participants enrolled in the Program of All-Inclusive Care for the Elderly (PACE), a Medicare and Medicaid program that coordinates medical and long-term care for older adults, reported fewer unmet needs than those receiving traditional Medicaid-funded services. Adults receiving home- and community-based services were also more likely to report unmet needs than those living in residential care settings.

“Long-term services and supports are designed to help people live with dignity and independence, but our findings suggest the current fragmented system isn’t consistently delivering on that promise,” said Romil Parikh, SPH researcher and lead author. “As our population ages and more people rely on these services, policymakers have an opportunity to strengthen coordination across programs and ensure people receive the support they need to live the lives they want.”

The study authors noted that their findings highlight the need for more coordinated approaches to delivering and funding long-term services and supports in the U.S.