Rural Seniors and People with Disabilities Face Challenges Accessing Long-term Services and Supports

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There are currently 12 million people in the United States who use long-term services and supports (LTSS). States split funds for LTSS between institutional settings, like skilled nursing facilities or assisted living facilities, and home and community-based settings. Over the next decade, rural areas are likely to see more growth in their aging populations than urban ones. This trend might lead to greater numbers of rural residents in need of LTSS for age-related disabilities. In order to meet the growing demand for LTSS, states must adjust their spending and invest more money and workforce development in home and community-based services (HCBS).

Meg Traci, research associate professor at the University of Montana Rural Institute for Inclusive Communities, suggests that the COVID-19 pandemic provides opportunities to reflect on a number of lessons.  “The overarching threat to HCBS is institutional bias,” she says. The Social Security Act that created the Medicaid program requires states to provide LTSS at institutions, while providing services in the community is considered optional; this is what is referred to as an “institutional bias.” Traci adds, “for our rural population, we have more people in our institutions than you would expect, compared to metro counties. It’s that ‘out-of-sight, out-of-mind’ narrative. And institutional settings are dangerous, because of the risk of infection.”

A 2016 policy brief from Maine Rural Health Research Center described the ways in which rural, elderly residents aging into disability use HCBS. According to the brief, 34% of rural LTSS users were over 85 years old, compared to 30% of LTSS users in urban areas. Yet 48% of rural LTSS users accessed care through nursing facilities, while 38% of urban LTSS users did so. Mary Willard, director of training and technical assistance at The Association of Programs for Independent Living (APRIL), explains that one of the reasons for this difference in utilization is lack of knowledge of HCBS programs on the part of rural residents.

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She says elderly residents of rural states might think they have to go into nursing facilities because that is the only option they are often told about. Because this population is also more likely to experience chronic disease and poverty than their counterparts in urban areas, the Maine study revealed, more LTSS will be needed for this population than it currently receives.  “We need to go back to being communities for each other,” Willard says. “How are we going to fill this need?”

Traci said the flexibility that was granted through the CARES Act and the American Rescue Plan Act helped people with disabilities and seniors to maintain their independence. In Montana, where she is based, initiatives like allowing family members to act as direct support in the home allowed rural individuals to continue receiving needed supports. “Disasters need to be built into our health plans,” she said. “I might have several family members who, on a blue-sky day, would not be my direct-support person, but under these conditions, I can train them and they can come in. There should be conditions under which the rules that constrict who can function as support should be waived.” The practice of paying family members as direct support professionals (DSPs) is already being implemented in several states. Beyond that, Traci said other initiatives that would help seniors and people with disabilities include expansion of Medicaid HCBS waiver coverage and home modifications.

“Medicaid expansion matters,” she says. “If your state doesn’t expand Medicaid, you’re limiting the number of people who have the option to live in their homes when they need HCBS or other supports. States that expanded Medicaid gave more people the opportunity to have the health plan that pays for what they need.” She adds that, in her view, Medicaid expansion aligns the rural value of promoting independence while remaining a valued member of a community.  A 2020 study of the impact of Medicaid expansion on long-term care use found that home health services use increased more than nursing home services use. The increases in nursing home use that did occur were among the oldest and lowest-income Medicaid recipients with the most medical needs.

But before utilizing HCBS, rural users face inequities and barriers unique to their locations in geographically isolated areas. Traci notes that Medicaid waiver programs can be geographically focused, which she says limits individuals’ options for self-directed care. (Self-direction is a policy that allows beneficiaries or their representatives to make decisions about their care, including who provides their services, how the services are delivered, and other decisions. Self-direction allows more choices about one’s daily life as recipients lean on a support system.) In addition, rural residents often have limited availability of providers, transportation options, and familiarity with technology. These factors are often exhausted by limited investment in the community because providing nursing care facilities rather than HCBS is more profitable for investors.  A recent study noted that when LTSS users in rural areas are spread out geographically, transportation became an issue for DSPs and other care workers. Thus, HCBS became “not viable from a business perspective.”

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Experts have also looked at efforts to rebalance LTSS through the Balancing Incentive Program. The Balancing Incentive Program was created as part of The Affordable Care Act and provided financial incentives to states to increase spending on HCBS. This initiative backfired, he wrote, because it did not address “baseline inequities in heath…, availability, access, and quality for rural populations.” Though increased use of HCBS can save state Medicaid agencies money, these practices work best when they account for the social and structural contexts of LTSS users in rural areas. Understanding social and structural contexts of rural areas is essential to ensure they don’t worsen disparities in the caregiving workforce and technological infrastructure. “The availability of care may be limited in rural areas, necessitating travel by providers and consumers over long distances. A particularly insidious effect of transportation barriers is that spatial isolation of beneficiaries can contribute to a perceived lack of demand, which…perpetuates lower funding for new services,” the report stated.

Meeting the need for HCBS in rural communities requires building and maintaining a skilled workforce of DSPs. Some states are approaching this need by providing incentives to promote direct-support care work as a long-term career. For example, Tennessee piloted a program in 2021 that allows DSPs to earn 18 hours of college credit and a postsecondary credential if the worker completes training through the state’s community colleges or colleges of applied technology. Provider organizations then offer wage incentives to DSPs who complete the trainings. Officials in Tennessee expect adoption of the practice to improve employee retention, which, in turn, can improve the lives of DSPs and the lives of people receiving services. Katie Moss, deputy chief of long-term services and supports at TennCare, says the agency plans to professionalize the field so workers already in the direct-support workforce will remain, and any workers who leave will do so having viewed their time in direct-support work as positive professional development.

Many states have started using a managed-care model to deliver HCBS. This model involves states contracting with a health insurance company such as Centene, Humana, or Aetna to oversee aspects of the HCBS system, such as paying HCBS provider organizations and DSPs. Traci says she has seen examples of working conditions for DSPs worsen when they are overseen by managed-care organizations, creating overextended working environments for the workers who remain. And Willard says while the managed-care organizations have money to fund creative pilot projects that can help with independent living, “the jury is out” on the success of these initiatives from state to state. She suggests that better data collection is needed as well, adding that even the best programs have unintended consequences that policymakers did not anticipate. “If you’ve seen one state’s program, you’ve seen one state’s program,” Willard says. “Those of us who work nationally can try our best to provide technical assistance and support, but we can’t know 50 states’ programs. There’s so much nuance,” she said. As she looks to the future, Willard quotes a friend working in the disability community: “In-home care should be a human right,” she said. “It’s a social justice issue.    

Traci says some of that program variation across states can be ameliorated not only through research and data, but through changing the cultural conversations about aging and disability. “There are these rampant narratives about assisted living, of people saying, ‘I finally got my parents to realize they’d be better off in supported living, instead of in their own homes,’” she says. But she thinks future generations might alter the way we view disability and aging. She notes the inclusive attitudes of Gen Z, saying they might change both small and large challenges people with disabilities already face, for example, rethinking the way homes are built and making them more accessible, or expanding the degree of self-determination an individual has. Although the future holds many promises, the conversation must begin today towards increasing the availability and funding of HCBS for rural communities.

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1. “Balancing Incentive Program.” Medicaid.gov, 16 May 2022, https://www.medicaid.gov/medicaid/long-term-services-supports/balancing-incentive-program/balancing-incentive-program/index.html.

2. Coburn, Andrew F., et al (2016). “Are Rural Older Adults Benefitting from Increased State Spending on Medicaid?” University of Southern Maine, Muskie School of Public Service, Maine Rural Health Research Center. https://digitalcommons.usm.maine.edu/longterm_care/6/.

3. Moss, Katie. Personal interview. 6 May 2022.

4. Traci, Meg. Personal interview. 19 May 2022.

5. “Self-Directed Services.” Medicaid.gov, 22 May 2022, https://www.medicaid.gov/medicaid/long-term-services-supports/self-directed-services/index.html.

6. Siconolfi, Daniel. “Rural-urban disparities in access to home-and community-based services and supports: Stakeholder perspectives from 14 states.” The Journal of The American Medical Directors Association, vol. 20, no.4, 1 Apr. 2020, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6451868/.

7. State of Tennessee, Division of TennCare. Initial HCBS Spending Plan Projection and Narrative, 12 July 2021, https://www.tn.gov/content/dam/tn/tenncare/documents/ARPAEnhancedFMAPPlanForHCBS.pdf.

8. Van Houtven, Courtney Harold et al. “Association of Medicaid Expansion Under the Patient Protection And Affordable Care Act With Use of Long-term Care.” JAMA Network Open, vol. 3, no. 10, 1 Oct. 2020, https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2771117.

9. Willard, Mary. Personal interview. 4 May 2022.