Barriers to Nursing Home Care for Nonelderly Rural Residents

Abstract

Rural residents experience higher disability, mortality, and poverty rates than their urban counterparts; they also have more barriers to accessing care, including nursing home care. Meanwhile, the proportion of nonelderly adult nursing home residents (<65 years old) is growing, yet little is known about this population and barriers they face trying to access care, especially in rural areas. This qualitative study uses data from 23 semistructured interviews with rural hospital discharge planners in five states to identify specific barriers to finding nursing home care for nonelderly rural residents. We grouped those barriers into three primary themes—payment status, fit, and medical complexity—as well as two minor themes—caregivers and bureaucratic processes—and discuss each in the article, along with potential policy and programmatic interventions to improve access to nursing home care for nonelderly rural residents.

Keywords

rural Medicaid long-term care nursing homes disability

Introduction

At any given time, more than 15% of the nearly 1.5 million nursing home residents in the United States are under the age of 65 years (Centers for Medicare & Medicaid Services, 2015). In recent years, the number of nonelderly nursing home residents has steadily grown (Miller, 2011), from 9% in 1996 (Agency for Healthcare Research and Quality, 2001) to 15% in 2012 (Harris-Kojetin, Sengupta, Park-Lee, & Valverde, 2013). Nonelderly (<65 years of age) residents differ from residents above age 65 in their health and demographic profiles, insurance status, and health care utilization. For example, nursing home residents ages 22 to 64 years are more likely than their counterparts above 65 years to be long-stay residents and to need help with activities of daily living (ADLs; Irvin, Denny-Brown, Morris, & Postman, 2016), are less likely to use mobility devices, or have sensory impairments (Agency for Healthcare Research and Quality, 2001). However, they tend to have more mental health concerns and are more likely to be below the poverty level, to be non-White, and to have never married (Agency for Healthcare Research and Quality, 2001; Grabowski, Aschbrenner, Feng, & Mor, 2009; Simon, Lipson, & Stone, 2010). As a result, younger nursing home residents tend to have different needs and preferences than their older counterparts and require different approaches to providing for a good quality of life in long-term care (Hay & Chaudhury, 2015). Still, the vast majority of research and policy attention on nursing home residents has been focused on adults above the age of 65 years, leaving a gap in knowledge about nursing home care for nonelderly adults, especially those in rural areas, where research and data are particularly sparse (Wodchis, Fries, & Pollack, 2004). This study addresses that gap by investigating barriers to nursing home access for rural residents below the age of 65 years.

Across the United States, the overall number of people requiring long-term services and supports, including nursing home care, is growing (The SCAN Foundation, 2012), as the population is aging and the number of people living with disabilities is rising (U.S. Census Bureau Public Information, 2012). People are living longer than ever before with disabilities and complex medical conditions (Avendano, Glymour, Banks, & Mackenbach, 2009; Vos et al., 2012). In addition, the prevalence of complex conditions and comorbidities like obesity and dementia is higher than ever before (Vos et al., 2015). These issues are felt most acutely in rural areas, which experience higher disability and mortality rates and poorer health behaviors than the rest of the country (Garcia, 2017; Matthews et al., 2017; Rural Health Information Hub, 2017a), and have particularly affected nonelderly rural residents (Matthews et al., 2017). Meanwhile, rural areas have unique barriers to accessing health care in general, and long-term care, including nursing home care, in particular (Coburn & Bolda, 2001; Douthit, Kiv, Dwolatzky, & Biswas, 2015; Hutchison, Hawes, & Williams, 2005; McAuley, Pecchioni, & Grant, 2002). Rural areas have fewer nursing homes and home health agencies and also face historic shortages in the long-term care workforce at all levels, from certified nursing assistants to specialty care like psychiatry (Lee, Dooley, Ory, & Sumaya, 2013; D. Meyer, Raffle, & Ware, 2014). While some programs like the National Health Service Corps (Rural Health Information Hub, 2017b) have helped in addressing access to health care in rural areas, few efforts have focused specifically on access to long-term care in rural areas. This study will help to identify some specific barriers that could be addressed to improve access to such care.

Rural areas also have higher poverty rates and lower median incomes than urban areas (U.S. Department of Agriculture, 2017). Long-term care is expensive, and nursing home care is the most expensive form: The median cost for 1 year of nursing home care is more than US$90,000 (Reaves & Musumeci, 2015). The majority of nonelderly adults have unrealistic expectations about their risk of needing long-term care (Henning-Smith & Shippee, 2015), and most have made no plans for it, financial or otherwise (Thompson et al., 2013). Few people can afford to pay for long-term care privately, and most private insurance plans offer little or no coverage for long-term care. As a result, state Medicaid programs are responsible for a substantial portion of costs, funding more than half of all long-term care (Reaves & Musumeci, 2015) and nearly two thirds of nursing home care (Harrington, Carrillo, & Garfield, 2015), amounting to more than US$150 billion in annual Medicaid spending on long-term care (Eiken, Sredl, Burwell, & Saucier, 2016). This has important implications not only for federal and state budgets but also for individuals’ access to care. For example, in instances when Medicaid reimbursement rates for nursing home care are lower than reimbursements for Medicare or private pay, nursing homes may have a disincentive to accept patients on Medicaid. These issues are particularly salient for nonelderly adults needing nursing home care, as they are more likely than nursing home residents above 65 years to be in poverty and rely on Medicaid for assistance (Agency for Healthcare Research and Quality, 2001).

Patient preference and public education about long-term care generally, and nursing home care specifically, are also important. In general, individuals prefer to remain in their homes, rather than go to nursing homes (Keenan, 2010). Indeed, the majority of people needing long-term care, including individuals below 65 years, reside in the community and receive unpaid caregiving assistance from family and friends (Kaye, Harrington, & LaPlante, 2010). However, nursing home care is sometimes necessary for more serious care needs or when the home setting is unsafe or home health care or family caregiving is unavailable. Still, younger residents have voiced concerns about living in a nursing home group setting and losing privacy and autonomy (Ho, Kroll, Kehn, Anderson, & Pearson, 2007). Furthermore, although federal policy mandates that state Medicaid programs provide coverage for nursing home care, many home and community-based services and programs are left to the discretion of states, which can choose to fund them through Medicaid waiver programs (Center on Budget and Policy Priorities, 2016; Shapiro, 2010).

Meanwhile, federal policy prohibits federal Medicaid funding for any care for adults ages 21 to 64 years in “institutions for mental diseases” (IMDs), which are defined as institutional settings with more than 16 beds whose primary function is to diagnose, treat, and care for individuals with mental illness. This policy known as the “IMD exclusion” has existed since Medicaid was enacted in 1965 and was designed to aid in deinstitutionalization, or moving treatment of mental illness from institutions to the community (Blyler et al., 2016). In doing so, however, it has created additional barriers to care for many low-income nonelderly adults with chronic and persistent mental illness, and it has had the unintended consequence of that population relying more on nursing homes for long-term care than on psychiatric institutions or community-based care (Legal Action Center, n.d.; Simon et al., 2010; Torrey, 2013). Although increasing attention is being paid to such policies in the context of larger debates about the future of Medicaid and health care financing, little is known about whether, or how, these issues transpire in rural areas.

The goal of this analysis is to examine barriers to nursing home placement for nonelderly rural residents to inform ongoing clinical and policy efforts to ensure appropriate long-term care access and use in rural communities.

Method

Data and Sample

Data for this study came from semistructured interviews with 23 discharge planners, all of whom work in rural U.S. hospitals and self-identified as the hospital’s primary discharge planner. The discharge planners’ professional backgrounds included both nursing and social work. All but one of the discharge planners worked in a Critical Access Hospital (CAH); the remaining hospital was a rural Prospective Payment System (PPS) hospital. The sample was drawn from five states: Georgia, Idaho, Minnesota, Pennsylvania, and Wisconsin. These states were chosen to represent the four census region (with two in the Midwest) because they each have sizable rural populations (>20% of each included state’s population are rural). Discharge planners were contacted about the study in multiple ways: (a) by the state Flex program coordinator or state office of rural health who knew the participants’ roles in their hospital workplaces, (b) referred by other subjects in the sample, and (c) in the case of Wisconsin, by the Rural Wisconsin Health Cooperative, which works close with rural hospitals across the state. Discharge planners volunteered to participate and were not provided any compensation. This study was approved by the University of Minnesota Institutional Review Board.

Data Collection

Interviews were conducted between November, 2016, and February, 2017. Twenty-one of the 23 interviews were conducted by phone by one of the study authors. The interviewer on each call took notes during the interview and also audio-recorded each interview. Two discharge planners requested to complete the interview by email instead of by phone and provided responses in this manner. The phone interviews lasted 20 to 30 min each and consisted of 11 questions. The primary purpose of the interview was to understand medical and nonmedical barriers to nursing home care for rural residents. However, the interview included two questions about nonelderly rural residents specifically: (a) “Do you ever find nursing home care for patients younger than 65?” (b) If yes, “What unique barrier(s), if any, does finding them [rural residents under 65] nursing home care present?” Answers to the latter question represent the most challenging issues faced by rural discharge planners in finding nursing home care for patients younger than 65 years; however, some of those challenges are also relevant for patients older than 65 years as well. The current study is part of a broader project looking at barriers to nursing home care for rural residents generally. We also asked the discharge planners to recommend any specific policy and programmatic interventions that could help alleviate barriers, and some of those were specifically related to serving adult residents younger than age 65.

Analysis

Following each interview, one of the researchers typed up interview summary notes, which were checked by a second researcher for completeness and for accuracy against the audio recordings. After all 23 interviews were completed, the researchers reviewed the responses to the questions about serving adult rural residents younger than 65 years, using conventional content analysis to code them for themes, in which codes and subsequent themes emerged from the data analysis (Hsieh & Shannon, 2005). The qualitative analysis was done using a grounded theory approach. The lead researcher on the project conducted the initial coding and categorized responses into themes and then checked for consistency and agreement with the other three researchers on the study team. During this process, the research team worked toward consensus to ensure intercoder reliability; the initial coder also checked those codes against the original coding to ensure intracoder reliability, revising as necessary to achieve group consensus (van den Hoonaard, 2008). We identified themes if several of the discharge planners raised the same issue. However, given the relatively small sample size, we also identified two minor themes if more than one discharge planner raised the same issue.

Results

All but two discharge planners in our study stated that they have placed adult patients younger than 65 years in nursing home care. Of those, five discharge planners stated that the process of finding nursing home care for nonelderly patients is no different than finding it for patients older than 65 years; the remaining 16 discharge planners stated that placing adult patients younger than 65 years in nursing home care was often more difficult than placing elderly patients, and posed unique challenges, which present a sufficient sample size to identify themes (Hagaman & Wutich, 2017). Specific challenges highlighted by the respondents can be grouped into three themes (ordered by frequency of mentions)—payment status, fit, and medical complexity—as well as two minor themes—caregivers and bureaucratic processes. Notably, some of these are not unique to patients younger than 65 years, although access issues may be heightened in that demographic. Details for each of those themes are included below, and illustrative quotes for each theme are shown in Table 1.

Table 1.

Illustrative Quotes for Each Barrier Theme.

Theme	Quotes
Payment status	“Usually payment is one of the biggest issues that we have. For instance, for some of these people, they just can’t go. They don’t have the funds, they don’t qualify [for Medicaid/Medicare], they’re in that gray area.” (Discharge planner 8, Minnesota)
	“It’s hard when they need rehab or LTC, but they don’t have a payer yet and they can’t afford it privately. We do have a couple of facilities that might take indigent patients, but it’s a lengthy process to get them in there.” (Discharge planner 13, Georgia)
	“We have transferred patients without the coverage, they do not apply or are declined, end up with a large bill and are not accepted back in the future due to outstanding charges. This has been the case for multiple patients that we find they will not be accepted to multiple facilities due to outstanding bills.” (Discharge planner 15, Minnesota)
	“Most of those patients are on Medical Assistance [MA], so the reimbursement’s lower. From the nursing home’s end, they’re looking at, this person’s younger, they’re going to be in our nursing home longer term and with the reimbursement being MA, it sometimes causes an issue.” (Discharge planner 16, Pennsylvania)
Fit	“We have had, in the past, someone who was here two months until we finally found a place that was willing to accept her because of her age, because they said they could not meet her psychosocial needs in the nursing home because the population is all geriatric.” (Discharge planner 1, Wisconsin)
	“ . . . the younger folks have different needs. They like different things, they like different foods, they like different music, they like different entertainment. They have a whole different routine. So, to integrate that with somebody who’s 60, 70, 80 . . . is just asking for more roommate issues than they currently have.” (Discharge planner 2, Wisconsin)
	“They don’t want to go where there are all old people if they’re younger. It’s more their personal preference that holds up the process more than whether the place can actually manage them or not.” (Discharge planner 21, Wisconsin)
Medical complexity	“Some patients have very complicated conditions and need extended care and want to return to their communities. Especially in a rural community where they do not offer anything but a nursing home and swing bed there is no other option for them to receive 24 hour care. We also are not able to find 24 hour workers to assist patients in their homes. We are lucky if home care can go in 7 days a week for an hour a day.” (Discharge planner 4, Minnesota)
	“We’ll have people with CP, ALS, multiple sclerosis . . . ” (Discharge planner 2, Wisconsin)
	“We have a large population with COPD and CHF who are working on getting disability, but aren’t on it yet.” (Discharge planner 13, Georgia)
	“It used to be rarer, but in our area anyway, we have such a problem with alcohol and drugs. Young, young kids are abusing their bodies. I’m talking kids in their thirties in end-stage liver disease. Three of them this year. It just breaks your heart to see it. Too little; too late. Even if they quit drinking, it’s not going to change the outcome.” “ . . . they’re mobile, they’re young, but they’re dying. They can’t care for themselves in their home anymore, however they have drug-seeking behaviors as a history and they’re still mobile, so a SNF [skilled nursing facility] can’t take them into their facility.” (Discharge planner 14, Idaho)
	“We also have cases with younger patients where their care is so bad that facilities can’t manage them.” (Discharge planner 13, Georgia)
Caregivers	“There’ve been cases in their 50s with severe COPD and smoking that require SNF and long-term care or end up with residual cancer or the family can’t care for them because they’re so young and they just got married or have kids of their own.” (Discharge planner 10, Pennsylvania)
	“Currently, we have one younger person with a brain injury. He was staying at another nursing home, but they abandoned him at our ER and we spent weeks trying to find him a placement, but no one would take him. Now he’s in our nursing home. We have another [case] with someone who had a mental disability from birth and his mother was caring for him, but she died, so now he’s in our nursing home and they’ll both probably be here until the end of their days. They’re in the forties now.” (Discharge planner 13, Georgia)
	“You’ll have 45 and 50 year olds who are deemed disabled, are confined to a wheelchair, and they probably don’t need to go to a nursing home permanently, but due to poor family dynamics and due to poor care at home, they are now destined to it. At least they’ll get food three times a day and someone to take care of their needs.” . . . “These are patients, they make it to their 30s or 40s and then their parents have a stroke and those were their only caregivers. There are not that many group homes that will accept somebody who is bedbound, so what do you do with them? Especially in rural America.” (Discharge planner 23, Georgia)
Bureaucratic processes	“You have to apply to the state for a waiver for this, a waiver for that. They’re not going to stay in the hospital for six months, so you end up working with a nursing home to accept them, but you know in your heart, that’s probably not the best place to put a 26 year old.” (Discharge planner 23, Georgia)
Bureaucratic processes	“Some individuals, maybe it’s due to mental health, or certainly lifestyle choices they’ve made—chronic alcohol use, smoking—a lot of times what we’ve done is we’ll try to work with that individual. These might be cases where we’re filing more vulnerable adult reports or we’re seeing that they’re other factors going on.” (Discharge planner 8, Minnesota)

Source. Quotes taken from interviews with 23 rural hospital discharge planners.

Payment Status

The most common issue raised by the discharge planners was payment status for nonelderly patients (raised by seven of the interviewees). In some cases, respondents stated that they work with adult patients younger than 65 years who need nursing home care but who cannot afford to pay for it up front. In other cases, they stated that the patient has insurance but that it does not cover nursing home care. Multiple discharge planners also mentioned nursing homes’ reluctance to accept referrals from patients with Medicaid coverage because they get a lower reimbursement rate for it and because nursing homes expect that younger residents will be in the nursing home longer term, so lower reimbursements add up. Another discharge planner discussed the challenge of patients getting stuck with large bills that they cannot always afford to pay. She went on to describe situations in which nursing homes refuse to take patients who have outstanding bills for previous nursing home stays, compounding access issues, especially for low-income individuals.

Fit

Six of the discharge planners stated that one of the main barriers to placing nonelderly rural residents in nursing home care is related to poor fit between the patient and the potential nursing homes, either from the perspective of the receiving nursing home or from the perspective of the patient, their family, and/or that of their case management team. Discharge planners stated that it is often not a good fit for the patient’s psychosocial needs to live in a nursing home that has a majority of residents who are older and that nursing homes sometimes refuse patients younger than 65 years because they are concerned about older residents getting along well with younger residents. In particular, they discussed concerns that patients younger than 65 years may have different preferences, tastes, and lifestyle habits than nursing home residents older than 65 years and that these may lead to conflict, especially in shared rooms. The discharge planners also stated that patients who need nursing home care sometimes refuse it because they do not perceive it to be a good living environment for their social and emotional needs.

Medical Complexity

Five of the discharge planners stated that the nonelderly patients they work with who need nursing home care are often more medically complex, with conditions like multiple sclerosis, cerebral palsy, amyotrophic lateral sclerosis (ALS), chronic obstructive pulmonary disease (COPD), developmental disabilities, or severe obesity. Several respondents also mentioned that they deal more commonly with mental illness, substance abuse and dependence, and end-stage alcoholism in this population and that those are difficult conditions for which to find nursing home placement. The discharge planners discussed situations in which these were the primary conditions requiring care, as well as situations in which these were co-occurring with other chronic conditions. In each of those cases, the discharge planners mentioned that nursing homes are ill-staffed and equipped to handle such complex cases on top of their current caseloads.

Caregivers (Minor Theme)

Two of the discharge planners we interviewed stated that a particular issue with the nonelderly patient population is a lack of family caregivers. One of those discharge planners explained that even in cases when younger patients have family nearby, those family members are also younger and may be in a life stage where they are taking care of young children of their own, making it more difficult to be available for the patient. Another discharge planner described situations in which individuals have lifelong disabilities and have been taken care of by their parents, but then need nursing home care when their parents are no longer able to care for them. This makes it more difficult for them to safely discharge the patient home and also leaves the patient with fewer advocates to navigate the process of finding and sustaining appropriate long-term care.

Bureaucratic Processes (Minor Theme)

Finally, two discharge planners in this study mentioned that one of the unique challenges to working with nonelderly adults who need nursing home care is working with the state or county to establish vulnerable adult status, to help them make decisions about nursing home care in the event that the patient’s decision-making capacity was compromised. While exact definitions and processes vary by state, vulnerable adult status generally refers to situations in which adults are unable to safely care for themselves and autonomously make decisions about their own treatment, finances, and legal matters. In such cases, these adults require another adult to act as a guardian and to make decisions on their behalf. In some cases, patients have put those provisions in place ahead of time; but more often, it is necessary to go through the court system to obtain vulnerable adult status and to assign a legal guardian. Certainly, not all patients would require this level of protection, but for those who do and who otherwise would be unsafe if discharged to home, it can add time and effort to discharge planning, especially in the absence of a family caregiver. Furthermore, multiple discharge planners mentioned that group homes or community-based residential facilities might be more appropriate for younger patients but that these sometimes require additional waivers from the state, which can delay the process of finding care and may require using nursing home care in the interim.

Discussion

The majority of the rural hospital discharge planners interviewed for this study indicated that they seek nursing home placement for adult patients younger than 65 years, either occasionally or regularly. Of those who find these types of placements, all but two discharge planners indicated that doing so presents particular challenges. We characterized these challenges into three themes—payment status, fit, and medical complexity—as well as two minor, or emerging, themes—caregivers and bureaucratic processes. Although not all of these themes are unique to patients below 65 years or to rural residents, their implications should be considered in light of the unique needs of working-age rural residents, a group that experiences increased risk of mortality and morbidity, compared with the older and urban adults (Case & Deaton, 2015; Garcia, 2017; Moy et al., 2017).

For payment status, the most common barrier mentioned, we heard multiple issues with individuals not having enough money to pay privately, their insurance not covering long-term care, or reluctance on the part of nursing homes to accept Medicaid for long-term stays. Three of the five states in our sample (Georgia, Idaho, and Wisconsin) did not expand Medicaid under the Affordable Care Act, which was associated with higher rates of uninsurance for working-aged adults (Garfield, Damico, Stephens, & Rouhani, 2014), making it more difficult for low-income working-aged adults to afford and access health care, as well as to put any money aside for long-term care insurance or savings. This is especially true in rural areas, where private insurance coverage among working-aged adults is less common (Foutz, Artiga, & Garfield, 2017).

For those adults who do qualify for Medicaid, our findings are consistent with prior research showing that nursing homes demonstrate the potential for preferential treatment toward individuals who can pay privately over residents on Medicaid (Ettner, 1993), especially in states with lower Medicaid reimbursement rates (M. H. Meyer, 2001), despite laws designed to restrict such practices. Similar insurance-based discrimination has been found in other sectors of health care, as well (Han, Call, Pintor, Alarcon-Espinoza, & Simon, 2015), demonstrating that this is a widespread issue, which may lead to patients relying on Medicaid being sent to lower quality facilities (Mor, Zinn, Angelelli, Teno, & Miller, 2004). Two states with substantial rural populations, Minnesota and North Dakota, address this using a system called “rate equalization,” in which nursing homes cannot charge private pay residents more than what Medicaid reimburses (North Dakota Office of Human Services, 2016; Punelli & Williams, 2016). Medicaid rate equalization may help to reduce discrimination on the basis of payment status, but only these two states currently require this (North Dakota Office of Human Services, 2016; Punelli & Williams, 2016). Raising nursing home reimbursement rates generally may also make it easier for facilities to accept patients and provide high-quality care. Indeed, there is evidence that even small changes within nursing home funding and reimbursement have the potential to improve the care that nonelderly residents receive (Wodchis et al., 2004).

For fit, discharge planners shared issues related to patients not feeling as though a nursing home setting or population is a good fit for them; likewise, we heard about nursing homes not wanting to accept younger patients for fear that they would not fit socially within their current resident population. For medical complexity, we heard about placement challenges faced by younger and middle-aged adults with disabilities, co-occurring substance use behaviors and disorders, and conditions that require complex care. This is especially relevant for nonelderly adults, as newly admitted nursing home patients with mental illness or behavioral health problems are more likely to be younger than the general nursing home population (Aschbrenner, Grabowski, Cai, Bartels, & Mor, 2011), even though nursing homes may not provide the most appropriate care setting for younger adults with mental illness (Simon et al., 2010).

Two minor themes emerged in this analysis, both mentioned by two discharge planners each. For caregivers, we heard problems with lack of family caregivers for rural residents below 65 years with disabilities; in some cases, this was because those individuals’ primary caregivers had been their parents who were now aging and/or dealing with health problems of their own. In other cases, the individuals had adult children who were unable to provide full-time caregiving, as they were caring for their own families. Still others had no family caregivers at all, short of hiring one, which they could not always afford to do. Previous research has highlighted issues faced by caregivers of nonelderly individuals with mental illness, including lack of social support and financial strain (Corsentino, Molinari, Gum, Roscoe, & Mills, 2008); our findings add to this evidence and provide an urgent call for more attention to this often overlooked group. For bureaucratic processes, discharge planners shared stories about the time-consuming and arduous process of applying for waivers to get the patient into appropriate care and about the process of applying for vulnerable adult status with the state or county. Although both of these themes were mentioned by only two discharge planners, we suspect that they may emerge as more common issues in larger sample sizes and we believe that they are deserving of additional research to better understand their true scope and impact.

The issues we heard about from discharge planners are happening within the broader context of other compounding issues in rural America. Rural areas have higher poverty rates, higher disability rates, more pronounced issues with the opioid epidemic, poorer health behaviors, and greater health care workforce shortages, especially for specialty care, than urban areas do (Dart et al., 2015; Garcia et al., 2017; MacDowell, Glasser, Fitts, Nielsen, & Hunsaker, 2010; Matthews et al., 2017; Rural Health Information Hub, 2017b; “USDA ERS–Poverty Demographics,” n.d.). In particular, research has recently highlighted the diminishing health and well-being of middle-aged Americans, especially in rural areas (Garcia et al., 2017; Matthews et al., 2017). The stories that discharge planners shared about highly complex younger and middle-aged patients struggling to access and afford appropriate long-term care, often while battling complex health conditions, illustrate how these problems in rural areas can manifest to the detriment of those already most vulnerable.

The discharge planners we talked with also had many suggestions for policy and programmatic interventions, some of which were directly related to serving rural residents younger than 65 years. One suggestion focused on the need for more group homes, community-based residential facilities, and other “age-appropriate” options for nonelderly adults with long-term care needs. For example, one discharge planner discussed a local county nursing home that used to have a separate wing designated for adult residents below age 65 as one potential solution; however, that same discharge planner also believed that that particular solution had not been financially viable. Many of the discharge planners we talked with lamented the fact that this population does not always fit well within general nursing home populations; increasing residential service and funding options particularly through Medicaid waiver programs to help pay for them would help to address this issue. For residents with chronic and persistent mental illness, it may be helpful to allow exemptions to the IMD exclusion, allowing nonelderly adults to receive federally funded care in psychiatric institutions rather than nursing homes. This idea is currently being tested in 11 states and D.C. by the Centers for Medicare & Medicaid Services under the Medicaid Emergency Psychiatric Demonstration (Blyler et al., 2016; Centers for Medicare & Medicaid Services, 2012); however, more research is needed on how such treatment options would work in rural areas.

Similarly, multiple discharge planners stated that they would ideally like to help people remain at home, as is often their preference. Policy has shifted to support those preferences, with programs like Money Follows the Person and other efforts to rebalance long-term care toward home and community-based services (Nishita, Browne, Hawk, Whitfield, & Rosen, 2013). However, respondents noted that a lack of willing and able caregivers (formal and informal) makes this difficult. Increasing the number of and funding for home health care services, particularly services that can offer 24-hr care, would help to keep people home, when appropriate. Some of the discharge planners we talked with had specific ideas to facilitate this. Two of them suggested that community paramedic programs can be useful in helping to keep people safe at home. Evidence suggests this strategy may be helpful in rural communities (Flex Monitoring Team, 2014); however, it should be used to complement, rather than as a substitute for other forms of long-term care. Another described a volunteer program with local caregivers who are able to act as a bridge between discharge from the hospital and more formal care systems. Yet another discharge planner stressed the important role that transition nurses can play in helping to facilitate a safe discharge to home. In the absence of such long-term services and supports, especially around caregiving, it becomes much more difficult to help this population avoid nursing home care even if they would like to.

Finally, one of the discharge planners we talked with stressed the importance of developing and maintaining good relationships with area nursing homes to facilitate honest and efficient conversations between the hospital and nursing homes about whether or not someone would be a good fit. This speaks to the broader issue of the importance of facilitating difficult conversations between facilities, providers, families, and patients. Discharge planners, nurses, and social workers play pivotal roles in this process (Henning-Smith, 2017); rural hospitals may benefit from finding ways to invest in time and effort to engage in such conversations, education, and relationship building. Indeed, research indicates that hospital discharge planners often provide limited guidance to patients and caregivers on how to select appropriate and high-quality nursing homes, which can lead to ill-informed choices based largely off of proximity to the nearest facility rather than appropriateness, fit, or quality (Tyler et al., 2017). Putting greater emphasis on the importance of discharge planners providing guidance and education during the process of selecting a long-term care facility, combined with more communication and transparency with the receiving facilities, may facilitate patients going to the most appropriate setting.

This study should be considered in light of its limitations. As with any qualitative study, caution should be exercised to generalize the results beyond our respondents and the five states that they represent. However, the issues that they raised are consistent with research on current population health and health care access issues in rural America (Coburn, 2002; Coburn & Bolda, 2001; Hutchison et al., 2005; Matthews et al., 2017; Rural Health Information Hub, 2017b). Future research should investigate to what extent the barriers they face are universal and how they should most effectively be addressed. In addition, because barriers to nursing home care for nonelderly adults were not the sole focus of this study, there are likely other issues related to this phenomenon that discharge planners would have raised if they had been asked more detailed follow-up questions. More research is needed on this understudied and growing population. Furthermore, many of the issues raised (e.g., accessing long-term care for medically complex patients) pose challenges to finding nursing home care for patients of all ages. Our findings represent those challenges most commonly cited in finding care for nonelderly adults but are not necessarily unique to that population.

Conclusion

Rural America faces myriad challenging health care issues: aging populations, higher disability and poverty rates, poorer health behavior, and more difficulty accessing care. Perhaps in no issue are these problems illustrated so well as in the barriers that rural hospital discharge planners face in finding long-term care for younger and middle-aged rural residents with disabilities and complex health problems. The discharge planners we talked with in this study described problems with fit, in which residents younger than 65 years may not be a good match for older nursing home populations; problems with medical complexity, including chronic conditions, substance abuse, and disability; lack of willing and able caregivers (formal and informal); problems affording care or finding facilities willing to accept Medicaid; and bureaucratic processes, that can slow transitions into appropriate long-term care settings. The issues—and interventions—raised in this study may be broadly applicable to rural America as it grapples with how best to respond to changing population dynamics and health needs.

Footnotes

Authors’ Note

The information, conclusions and opinions expressed in this manuscript are those of the authors and no endorsement by FORHP, HRSA, or HHS is intended or should be inferred.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was supported by the Federal Office of Rural Health Policy (FORHP), Health Resources and Services Administration (HRSA), U.S. Department of Health and Human Services (HHS) under PHS Grant No. 5U1CRH03717.

References

Agency for Healthcare Research and Quality. (2001). The characteristics of long-term care users. Rockville, MD: Author. Retrieved from https://archive.ahrq.gov/professionals/systems/long-term-care/resources/facilities/ltcusers/ltcuse1.html

Aschbrenner

Grabowski

D. C.

Cai

Bartels

S. J.

Mor

(2011). Nursing home admissions and long-stay conversions among persons with and without serious mental illness. Journal of Aging & Social Policy, 23, 286-304. doi:10.1080/08959420.2011.579511

Avendano

Glymour

M. M.

Banks

Mackenbach

J. P.

(2009). Health disadvantage in US adults aged 50 to 74 years: A comparison of the health of rich and poor Americans with that of Europeans. American Journal of Public Health, 99, 540-548. doi:10.2105/AJPH.2008.139469

Blyler

Azur

O’Day

Anand

Barrett

Choudhry

. . . Johnston

(2016). Medicaid Emergency Psychiatric Services Demonstration evaluation: Final report (Vol. 1; Mathematica Policy Research Report). Retrieved from https://innovation.cms.gov/Files/reports/mepd-finalrpt.pdf

Case

Deaton

(2015). Rising morbidity and mortality in midlife among White non-Hispanic Americans in the 21st century. Proceedings of the National Academy of Sciences of the United States of America, 112, 15078-15083. doi:10.1073/pnas.1518393112

Center on Budget and Policy Priorities. (2016). Policy basics: Introduction to Medicaid. Author. Retrieved from http://www.cbpp.org/research/health/policy-basics-introduction-to-medicaid

Centers for Medicare & Medicaid Services. (2012). Payment for certified nurse-midwife (CNM) services (Vol. MM7005). Baltimore, MD: Medicare Learning Network. Retrieved from https://www.cms.gov/Outreach-and-Education/Medicare-Learning-Network-MLN/MLNMattersArticles/downloads/mm7005.pdf

Centers for Medicare & Medicaid Services. (2015). Nursing home data compendium 2015 edition. Washington, DC. Retrieved from https://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/CertificationandComplianc/Downloads/nursinghomedatacompendium_508-2015.pdf

Coburn

A. F.

(2002). Rural long-term care: What do we need to know to improve policy and programs? The Journal of Rural Health, 18, 256-269.

10.

Coburn

A. F.

Bolda

E. J.

(2001). Rural elders and long-term care. The Western Journal of Medicine, 174, 209-213. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/11238364

11.

Corsentino

E. A.

Molinari

Gum

A. M.

Roscoe

L. A.

Mills

W. L.

(2008). Family caregivers’ future planning for younger and older adults with serious mental illness (SMI). Journal of Applied Gerontology, 27, 466-485. doi:10.1177/0733464808315290

12.

Dart

R. C.

Surratt

H. L.

Cicero

T. J.

Parrino

M. W.

Severtson

S. G.

Bucher-Bartelson

Green

J. L.

(2015). Trends in opioid analgesic abuse and mortality in the United States. New England Journal of Medicine, 372, 241-248. doi:10.1056/NEJMsa1406143

13.

Douthit

Kiv

Dwolatzky

Biswas

(2015). Exposing some important barriers to health care access in the rural USA. Public Health, 129, 611-620. doi:10.1016/j.puhe.2015.04.001

14.

Eiken

Sredl

Burwell

Saucier

(2016). Medicaid expenditures for long-term services and supports (LTSS) in FY 2014: Managed LTSS reached 15 percent of LTSS spending. Retrieved from https://www.medicaid.gov/medicaid/ltss/downloads/ltss-expenditures-2014.pdf

15.

Ettner

S. L.

(1993). Do elderly Medicaid patients experience reduced access to nursing home care? Journal of Health Economics, 12, 259-280. doi:10.1016/0167-6296(93)90011-3

16.

Flex Monitoring Team. (2014). The evidence for community paramedicine in rural areas: State and local findings and the role of the state flex program (Flex Monitoring Team Briefing Paper No. 34). Retrieved from http://www.flexmonitoring.org/wp-content/uploads/2014/03/bp34.pdf

17.

Foutz

Artiga

Garfield

(2017). The role of Medicaid in rural America. The Henry J. Kaiser Family Foundation. Retrieved from http://www.kff.org/medicaid/issue-brief/the-role-of-medicaid-in-rural-america/

18.

Garcia

M. C.

(2017). Reducing potentially excess deaths from the five leading causes of death in the rural United States. Morbidity and Mortality Weekly Report, 66. doi:10.15585/MMWR.SS6602A1

19.

Garcia

M. C.

Faul

Massetti

Thomas

C. C.

Hong

Bauer

U. E.

Iademarco

M. F.

(2017). Reducing potentially excess deaths from the five leading causes of death in the rural United States. Morbidity and Mortality Weekly Report, 66(2), 1-7. doi:10.15585/mmwr.ss6602a1

20.

Garfield

Damico

Stephens

Rouhani

(2014). The coverage gap: Uninsured poor adults in states that do not expand Medicaid—An update. Retrieved from http://www.nasuad.org/sites/nasuad/files/the-coverage-gap-uninsured-poor-adults-in-states-that-do-not-expand-medicaid-issue-brief.pdf

21.

Grabowski

D. C.

Aschbrenner

K. A.

Feng

Mor

(2009). Mental illness in nursing homes: Variations across states. Health Affairs (Project Hope), 28, 689-700. doi:10.1377/hlthaff.28.3.689

22.

Hagaman

A. K.

Wutich

(2017). How many interviews are enough to identify metathemes in multisited and cross-cultural research? Another perspective on Guest, Bunce, and Johnson’s (2006) landmark study. Field Methods, 29, 23-41. doi:10.1177/1525822X16640447

23.

Han

Call

K. T.

Pintor

J. K.

Alarcon-Espinoza

Simon

A. B.

(2015). Reports of insurance-based discrimination in health care and its association with access to care. American Journal of Public Health, 105 (Suppl. 3), S517-S125. doi:10.2105/AJPH.2015.302668

24.

Harrington

Carrillo

Garfield

(2015). Nursing facilities, staffing, residents and facility deficiencies, 2009 through 2014. The Henry J. Kaiser Family Foundation. Retrieved from http://kff.org/medicaid/report/nursing-facilities-staffing-residents-and-facility-deficiencies-2009-through-2014/

25.

Harris-Kojetin

Sengupta

Park-Lee

Valverde

(2013). Long-term care services in the United States: 2013 overview. Vital Health Statistics, 3(37). Retrieved from https://www.cdc.gov/nchs/data/nsltcp/long_term_care_services_2013.pdf

26.

Hay

Chaudhury

(2015). Exploring the quality of life of younger residents living in long-term care facilities. Journal of Applied Gerontology, 34, 675-690. doi:10.1177/0733464813483209

27.

Henning-Smith

C. E.

(2017). Gerontological social workers are key to a sustainable long-term services and supports system. Journal of Gerontological Social Work, 60, 178-183. doi:10.1080/01634372.2016.1272520

28.

Henning-Smith

C. E.

Shippee

T. P.

(2015). Expectations about future use of long-term services and supports vary by current living arrangement. Health Affairs (Project Hope), 34, 39-47. doi:10.1377/hlthaff.2014.0556

29.

P.-S.

Kroll

Kehn

Anderson

Pearson

K. M.

(2007). Health and housing among low-income adults with physical disabilities. Journal of Health Care for the Poor and Underserved, 18, 902-915. doi:10.1353/hpu.2007.0098

30.

Hsieh

H.-F.

Shannon

S. E.

(2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15, 1277-1288. doi:10.1177/1049732305276687

31.

Hutchison

Hawes

Williams

(2005). Access to quality health services in rural areas–long–term care: A literature review. In Gamm

Hutchison

(Eds.), Rural healthy people 2010: A companion document to healthy people 2010 (3rd ed.). College Station: Southwest Rural Health Research Center, School of Rural Public Health, System Health Science Center, The Texas A&M University, pp. 1-10. Retrieved from https://www.researchgate.net/publication/251282191_Access_to_Quality_Health_Services_in_Rural_Areas-Long-Term_Care_A_Literature_Review

32.

Irvin

C. V.

Denny-Brown

Morris

Postman

(2016). Pathways to independence: Transitioning adults under age 65 from nursing homes to community living. Cambridge, MA. Retrieved from https://www.mathematica-mpr.com/our-publications-and-findings/publications/pathways-to-independence-transitioning-adults-under-age-65-from-nursing-homes-to-community-living

33.

Kaye

H. S.

Harrington

LaPlante

M. P.

(2010). Long-term care: Who gets it, who provides it, who pays, and how much? Health Affairs (Project Hope), 29, 11-21. doi:10.1377/hlthaff.2009.0535

34.

Keenan

T. A.

(2010). Home and community preferences of the 45+ population. Washington, DC: AARP. Retrieved from http://assets.aarp.org/rgcenter/general/home-community-services-10.pdf

35.

Lee

W.-C.

Dooley

K. E.

Ory

M. G.

Sumaya

C. V.

(2013). Meeting the geriatric workforce shortage for long-term care: Opinions from the field. Gerontology & Geriatrics Education, 34, 354-371. doi:10.1080/02701960.2013.831348

36.

Legal Action Center. (n.d.). The Medicaid IMD exclusion: An overview and opportunities for reform. Retrieved from https://lac.org/wp-content/uploads/2014/07/IMD_exclusion_fact_sheet.pdf

37.

MacDowell

Glasser

Fitts

Nielsen

Hunsaker

(2010). A national view of rural health workforce issues in the USA. Rural and Remote Health, 10, 1531.

38.

Matthews

K. A.

Croft

J. B.

Liu

Kanny

Wheaton

A. G.

. . . Giles

W. H.

(2017). Health-related behaviors by urban-rural county classification—United States, 2013. Morbidity and Mortality Weekly Report, 66(5), 1-8. doi:10.15585/mmwr.ss6605a1

39.

McAuley

W. J.

Pecchioni

L. L.

Grant

J. A.

(2002). The impact of living in a rural county with no nursing home on utilization rates and admission mobility patterns. Journal of Applied Gerontology, 21, 40-57. Retrieved from https://journals-sagepub-com.web.bisu.edu.cn/doi/pdf/10.1177/0733464802021001003

40.

Meyer

Raffle

Ware

L. J.

(2014). The first year: Employment patterns and job perceptions of nursing assistants in a rural setting. Journal of Nursing Management, 22, 769-778. doi:10.1111/j.1365-2834.2012.01441.x

41.

Meyer

M. H.

(2001). Medicaid reimbursement rates and access to nursing homes. Research on Aging, 23, 532-551. doi:10.1177/0164027501235002

42.

Miller

N. A.

(2011). Relations among home- and community-based services investment and nursing home rates of use for working-age and older adults: A state-level analysis. American Journal of Public Health, 101, 1735-1741. doi:10.2105/AJPH.2011.300163

43.

Mor

Zinn

Angelelli

Teno

J. M.

Miller

S. C.

(2004). Driven to tiers: Socioeconomic and racial disparities in the quality of nursing home care. Milbank Quarterly, 82, 227-256. doi:10.1111/j.0887-378X.2004.00309.x

44.

Moy

Garcia

M. C.

Bastian

Rossen

L. M.

Ingram

D. D.

Faul

. . . Iademarco

M. F.

(2017). Leading causes of death in nonmetropolitan and metropolitan areas—United States, 1999–2014. Morbidity and Mortality Weekly Report, 66(1), 1-8. doi:10.15585/mmwr.ss6601a1

45.

Nishita

Browne

Hawk

Whitfield

Rosen

(2013). Advancing research in transitional care: Challenges of culture, language and health literacy in Asian American and native Hawaiian elders. Journal of Health Care for the Poor and Underserved, 24, 404-418. doi:10.1353/hpu.2013.0025

46.

North Dakota Office of Human Services. (2016). Medicaid long term care services: Nursing facilitly services. Retrieved from https://www.nd.gov/dhs/services/medicalserv/medicaid/longtermcare.html

47.

Punelli

Williams

(2016, November). Nursing facility reimbursement and regulation (Information brief). St. Paul, MN. Retrieved from http://www.house.leg.state.mn.us/hrd/pubs/nfreimb.pdf

48.

Reaves

E. L.

Musumeci

(2015). Medicaid and long-term services and supports: A primer. The Henry J. Kaiser Family Foundation. Retrieved from http://kff.org/medicaid/report/medicaid-and-long-term-services-and-supports-a-primer/

49.

Rural Health Information Hub. (2017a). Disability in rural areas—RHIhub Toolkit. Retrieved from https://www.ruralhealthinfo.org/community-health/disabilities/1/rural-prevalence

50.

Rural Health Information Hub. (2017b). Rural healthcare workforce introduction—Rural health information hub. Retrieved from https://www.ruralhealthinfo.org/topics/health-care-workforce

51.

The SCAN Foundation. (2012). Growing demand for long-term care in the U.S. (updated). Long Beach, CA. Retrieved from http://www.thescanfoundation.org/sites/default/files/us_growing_demand_for_ltc_june_2012_fs.pdf

52.

Shapiro

(2010, December). A new nursing home population: The young. NPR. Retrieved from http://www.npr.org/2010/12/09/131912529/a-new-nursing-home-population-the-young

53.

Simon

S. E.

Lipson

D. J.

Stone

C. M.

(2010). Mental disorders among non-elderly nursing home residents. Journal of Aging & Social Policy, 23, 58-72. doi:10.1080/08959420.2011.531989

54.

Thompson

Benz

Agiesta

Junius

Nguyen

Lowell

(2013). Long-term care: Perceptions, experiences, and attitudes among Americans 40 or older. Chicago, IL: The Associated Press-NORC Center for Public Affairs Research. Retrieved from http://www.apnorc.org/PDFs/LongTermCare/AP_NORC_LongTermCarePerception_FINALREPORT.pdf

55.

Torrey

E. F.

(2013). American psychosis: How the federal government destroyed the mental illness. Oxford, UK: Oxford University Press. Retrieved from https://books.google.com/books?hl=en&lr=&id=bZsRAAAAQBAJ&oi=fnd&pg=PP1&dq=american+psychosis+torrey&ots=mET_7L8uRN&sig=LwXYEIVPdESRXxmEP4ctOjKNEZM#v=onepage&q=americanpsychosistorrey&f=false

56.

Tyler

D. A.

Gadbois

E. A.

McHugh

J. P.

Shield

R. R.

Winblad

Mor

(2017). Patients are not given quality-of-care data about skilled nursing facilities when discharged from hospitals. Health Affairs (Project Hope), 36, 1385-1391. doi:10.1377/hlthaff.2017.0155

57.

U.S. Census Bureau Public Information. (2012). Nearly 1 in 5 people have a disability in the U.S., Census Bureau Reports. U.S. Census Bureau. Retrieved from https://www.census.gov/newsroom/releases/archives/miscellaneous/cb12-134.html

58.

U.S. Department of Agriculture. (2017). USDA ERS—Poverty overview. Retrieved from https://www.ers.usda.gov/topics/rural-economy-population/rural-poverty-well-being/poverty-overview/

59.

USDA ERS–Poverty Demographics. (n.d.). Retrieved from https://www.ers.usda.gov/topics/rural-economy-population/rural-poverty-well-being/poverty-demographics/

60.

van den Hoonaard

W. C

. (2008). Inter- and intracoder reliability. In Given

L. M.

(Ed.), The SAGE encyclopedia of qualitative research methods (pp. 445-446). Thousand Oaks, CA: SAGE. doi:10.4135/9781412963909.n223

61.

Vos

Barber

R. M.

Bell

Bertozzi-Villa

Biryukov

Bolliger

. . . Murray

C. J.

(2015). Global, regional, and national incidence, prevalence, and years lived with disability for 301 acute and chronic diseases and injuries in 188 countries, 1990–2013: A systematic analysis for the Global Burden of Disease Study 2013. The Lancet, 386, 743-800. doi:10.1016/S0140-6736(15)60692-4

62.

Vos

Flaxman

A. D.

Naghavi

Lozano

Michaud

Ezzati

. . . Murray

C. J.

(2012). Years lived with disability (YLDs) for 1160 sequelae of 289 diseases and injuries 1990-2010: A systematic analysis for the Global Burden of Disease Study 2010. The Lancet, 380, 2163-2196. doi:10.1016/S0140-6736(12)61729-2

63.

Wodchis

W. P.

Fries

B. E.

Pollack

(2004). Payer incentives and physical rehabilitation therapy for nonelderly institutional long-term care residents: Evidence from Michigan and Ontario. Archives of Physical Medicine and Rehabilitation, 85, 210-217. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/14966704