Ensuring Equitable Access to High-Quality Long-Term Services and Supports

Long-term services and supports (LTSS), also known as long-term care, is a reality of life, touching almost everyone in some way. These services are often particularly essential for people with chronic health conditions or disabilities to manage daily activities and maintain their quality of life. They encompass personal care tasks such as bathing, dressing, and eating, as well as more complex activities like managing medications and wound care. In addition to these services and supports, LTSS includes services for family caregivers, such as respite care. But LTSS is not experienced equitably by all. As an animated video in both English and Spanish from the AARP Public Policy Institute discusses, disparities persist across factors such as race, ethnicity, geographic location, income, and availability of family caregiver support.

Long-term Care Disparities video in English and Spanish.

Well-documented issue of disparities

Research highlights these inequities, with a range of studies and data resources, including the 2023 LTSS State Scorecard, shedding light on the issue. For example, residents of nursing homes that had the most admissions of Black residents received almost 200 hours per year less of nursing care compared to residents of nursing homes with the most admissions of white residents. These findings from the Scorecard support an existing body of research showing that Black nursing home residents are more likely than other populations to receive less care and low quality care.

Moreover, disparities extend beyond institutional settings; they are also prevalent in home and community-based services (HCBS). For example, a 2019 study identified several challenges affecting rural access to HCBS, such as a shortage of LTSS providers, lack of transportation, and difficulties in recruiting and retaining caregiving staff. Challenges in HCBS are of great concern as most older adults, notwithstanding their geographic location, would like to remain in and receive care and services in their homes and communities. HCBS enables them to do so.

A path forward: opportunities to address disparities

Decision makers in both the public and private sectors must confront these LTSS challenges with targeted solutions. These include:

Policy development. Strengthening policies to enhance access to affordable, high-quality LTSS is essential generally, and especially for racially and ethnically diverse older adults with limited financial means. Solutions should be grounded in lived experiences, recognizing that different age groups have unique needs. Expanding home care services, particularly in communities with diverse racial and ethnic populations, can help meet the growing demand for care. This can be achieved through more LTSS financing options, better pay and benefits for direct care workers, and offering culturally competent family caregiving training. In addition, policies that provide family caregivers with financial support and respite care can help alleviate their strain and enhance their quality of care.

Person and family-centered care. Tailoring care to individual needs, preferences, and cultural backgrounds can significantly improve the quality of life for older adults. Culturally competent caregiver assessments, for instance, can help family caregivers receive the necessary tools and support to provide high-quality care. Person and family-centered care fosters a more compassionate and effective LTSS system.

Data collection and reporting. Reliable, timely data is essential for identifying disparities and crafting targeted interventions. That information, however, is often lacking, but means of improvement are available. Regarding HCBS, for example, states can proactively take steps to improve their own data availability, such as by adopting and routinely using at least one of the nationally validated HCBS benchmarking surveys available (e.g., NCI-AD, HCBS CAHPS). These tools enable state policymakers to recognize and address care inequities across demographic groups. At the federal level, a requirement will also go into effect in the next few years for state reporting on an HCBS Quality Measure Set under the 2024 Medicaid Access rule—this is a step in the right direction to address data gaps.

Adopting an intersectional approach

Decision makers, meanwhile, must take such actions with great care and intention. To effectively address disparities, policymakers, providers, and community leaders must put intersectionality at the center of their strategies and tactics. It is important to understand that individuals experience more than one identity. This may include race, gender identity, and any of a number of other identities, in addition to other factors such as socioeconomic status and geographic location. All such elements intersect and can impact their access to LTSS.

An intersectional approach acknowledges that these factors do not operate in isolation but rather interact in complex ways to influence health outcomes and LTSS needs. For example, one area ripe for an intersectional approach is LTSS data collection and reporting. Where possible, data should be disaggregated by race, ethnicity, gender, age, sexual orientation, income level, and geographic location. Disaggregated data helps policymakers and providers identify gaps in care and services and personalize interventions to meet the unique needs of specific populations. By addressing these intersecting challenges, decision makers can create inclusive strategies that eliminate disparities in LTSS and ensure equitable access for all.

Multisector approach and better quality of life

What’s evident here is that addressing LTSS disparities requires more than action from a single sector. The complex needs of aging individuals, particularly those requiring LTSS, span across health care, housing, transportation, and social services. Multisector planning and partnerships at the state and federal level, integrating efforts between public and private entities as well as community-based organizations, can help create comprehensive, coordinated care systems. Such collaboration is essential for meeting the diverse and interconnected needs of older adults and their family caregivers.

The recently released AARP Public Policy Institute videos depict how ensuring access to high-quality LTSS is vital for improving the health and well-being of older adults as they age. By addressing disparities in access and implementing targeted, intersectional solutions, we can create a more equitable LTSS system that enables all individuals to age with dignity, providing opportunities for everyone to thrive.