Originally published by the Journal of Racial and Ethnic Health Disparities
Abstract
Older people express a preference for home and community-based care over skilled nursing, realizing that preference, however, is dependent upon having those options available. The present exploratory study uses publicly available data to understand if the geographic availability of long-term care options—skilled nursing, assisted living, home health, and homemaker/companion services—are equally distributed by demographics in Florida. Regression analyses showed that the percent 65 and older and the percent in poverty in a county were not related to long-term care availability or quality. Findings indicate that Hispanic older people have less access to nursing home beds, greater access to home health and homemaker/companion agencies, and tend to live in counties with a greater number of assisted living facility (ALF) deficiencies while Black older people have greater access to homemaker services. Rural counties had lower rates of home health and homemaker/companion agencies and fewer ALF deficiencies. The 65 and older population would benefit from the increased availability of long-term care options near the communities in which they live.
Introduction
There is a paradoxical trend in nursing home use. People are living longer, many with several chronic conditions—most living with at least one and yet, nursing home use is declining. Over 20% of those 85 and older report needing assistance with personal care and there are over 5 million people living with Alzheimer’s disease—populations that are expected to grow as the population continues to age [1, 2]. These trends would suggest an increased need for skilled nursing; however, over 80% of older people who receive assistance live at home, compared to 5% who live in assisted living facilities (ALFs) and the 13% who live in nursing homes [3]. The number of nursing homes is also declining while the number of ALFs is increasing and there are almost twice as many ALFs (28,900 facilities and 996,100 beds) as nursing homes (15,600 homes and 1.7 million beds) in the USA [4].
Further complicating our knowledge about nursing home use is that it differs by race and ethnicity. Similar to the overall trend, White older peoples’ use is declining. By contrast, Black older peoples’ and Hispanic older peoples’ use has been steadily increasing over time. Black older people, for example, made up 10.7% of the nursing home population in 2003 increasing to 14.2% in 2014. Hispanic older people made up 3.4% of the nursing home population in 2003 increasing to 5.3% in 2014. White older people made up 84.2% of the nursing home population in 2003 declining to 77.9 % in 2014 [5, 6].
These patterns of use are important given that the 65 and older population are projected to increase and become more diverse. The population of those 65 and older has increased 33% from 37.2 million in 2006 to 49.2 million in 2016—projected to double by 2060 [1]. Between 2006 and 2016, the older Black, Indigenous, and other persons of color population (BIPOC) have increased from 19 to 23% [1]. By 2040, this population is expected to increase to 28%.
This paper elucidates the role of the geographic availability of nursing home alternatives like assisted living and home care as possibly contributing to both the decline in nursing home use overall and to racial/ethnic differences. Geographic availability of long-term care (LTC) options is one of many measures of access to care, but one that is certainly important to policy makers, health care professionals, the LTC industry, state and local health care planners, and older people.
Differences in Long-Term Care Availability and Use: Prior Research
Older people express a clear preference for community care over nursing home care [7] and federal legislation reflects this preference. The 1999 Supreme Court Olmstead decision found it unlawful to segregate persons with disabilities, requiring that they be served in the most integrated setting possible [8]. For older people who need a nursing home level of care, this means allowing care to be provided in the community whenever feasible. Indeed, after the decision, a decline in nursing home utilization followed [9]. States are encouraged to provide nursing home alternatives or to “rebalance” services through the Medicaid 1915(c) Waivers and Money Follows the Person demonstration grants [10]. Two main options are assisted living and home care. Assisted living provides 24-h assistance, health care, and housing in an environment that is less restrictive than a nursing home [11]. Formal home care is provided by agencies that offer services like personal care, meal services, light housekeeping, and companionship [12].
The key to rebalancing efforts is the availability of community options; however, they are not evenly spread among the older population. Stevenson and Grabowski [13], for example, found that counties with a greater number of ALFs also had higher levels of education, income, housing values, and a lower proportion of BIPOC. They also found that counties with no assisted living were more often found in rural areas. While a similar study has not been conducted on the availability of home health, the information available indicates that the number of home health agencies over the last few decades has been growing, although in 2016 the number of agencies fell by 1.2% [14]. It is not clear if the decline is temporary or indicative of a trend. Currently, there are over 12,000 home health care agencies that serve about 3.5 million Medicare beneficiaries [14].
The research literature also suggests that the availability of LTC, in particular nursing home care, is not evenly distributed across the older population by race and ethnicity. Smith and colleagues [15] demonstrated that nursing homes are segregated by race and that Black older people are often found in lower quality homes. With regard to nursing home closures, Feng and colleagues [16] found that they occur more often in areas with higher concentrations of Black individuals and Hispanic individuals and in higher poverty areas. They also found that the distance to the nearest nursing home had increased over time in zip codes where there was a nursing home closure—suggesting that access becomes more difficult long after the initial closure. Other studies also demonstrate that poor performing nursing homes are more commonly found in Black and Hispanic communities, and in urban areas—making them less attractive options to the individuals living there [17,18,19].
Assisted living and home and community-based services (HCBS) have uneven use and outcomes by race and ethnicity. ALFs with large proportions of BIPOC have been found to have lower ratings of cleanliness, higher concentrations of people with mobility issues, and are more likely to be in predominately Black communities [20]. In a review of the literature, Hernandez and Newcomer [21] found that BIPOC and those with lower incomes are less likely to use assisted living, or if they do, they find themselves in lower quality ALFs with fewer amenities. With regard to HCBS, the literature shows that there is a high rate of unmet needs among Black older individuals [22]. For example, Herrera and colleagues [23] demonstrated that although Black and Hispanic older individuals were more likely than White older individuals to rely on community-based resources, their use was not associated with the ability to live independently. Cai and Temkin-Greener [24] found that Black and Hispanic compared to White HCBS dual-eligibles were more likely to remain in the community. When Black and Hispanic older individuals were admitted to the nursing home, they were more physically and cognitively impaired, indicating that BIPOC might prefer to stay at home or have no choice but to rely on community resources before having to go to a nursing home.
Understanding how access to care—in particular, the geographic availability of LTC options—differs by subpopulations could help shed light on differences in use and inform policy makers about how to address disparities. This study is exploratory and seeks to understand how various LTC options—nursing home beds, ALF beds, home health agencies, and homemaker/companion agencies—are geographically located in relation to the 65 and older population and if quality of nursing homes and ALFs vary across this population geographically.
Method
Data
Florida is the ideal study site to explore questions relating to differences in LTC options. Florida has one of the largest 65 and older populations in the nation with 3.9 million individuals or 21% of the state’s population [25]. It has a large Black and Hispanic population and a large nursing home, assisted living, and home health industry. Florida ranks 6th in the USA for number of nursing homes with 683 licensed nursing homes in Florida, representing approximately 83,587 beds—roughly occupied at 85% at any given time [26]. There are 3089 licensed ALFs in Florida, representing approximately 92,000 beds, 1932 home health agencies, and 2079 homemaker and companion services providers in Florida [27].
Data for this study come from several sources. All data are at the county level. The percent 65 and older, Black, White, Hispanic, and the percent of those 65 and older living below 125% of the federal poverty come from the 2018 US Census Bureau’s American Community Survey [28]. Data classifying a county as rural come from the Florida Department of Economic Opportunity in 2018 [29]. Counties are designated as being rural using the definitions set forth by Florida Statute Section 288.0656 [30]. By these definitions, a county is rural if it has a population of 75,000 or less or if it is a county with a population of 125,000 or less and is bordering a county with a population of 75,000 or less.
Data from the Centers for Medicare and Medicaid Services (CMS) were used to derive a list of certified nursing homes in Florida and a quality measure. Nursing home data come from CMS’ 2018 Nursing Home Compare [31]. A list of Home Health Care agencies and Homemaker and Companion agencies in 2018 and the counties they serve comes from Florida’s Agency for Health Care Administration or the state’s chief health policy and planning agency [27]. Home Health Agencies are licensed and surveyed by the State of Florida and provide services including medication assistance, physical therapy, and help with personal care to patients in private homes, assisted living facilities, and adult family care homes on a short-term or long-term basis [27]. Agencies providing homemaker and companion services provide services including household chores, shopping and meal prep, and companionship to people living at home. Although CMS’ Home Health Compare website includes a star rating system that is similar to the Nursing Home Compare website, a substantial portion of the data are not currently available and so the home quality data were not usable for the current study (see https://www.medicare.gov/homehealthcompare/Data/Footnotes.html for more information).
Data for ALFs also come from Florida’s Agency for Health Care Administration in 2018 [27]. The agency routinely inspects ALFs to ensure their compliance with Florida statutes, administrative codes, and federal requirements. Violations or deficiencies are reported on the agency’s website and include things like failing to appropriately assess an incoming resident, infection control problems, and violations of residents’ rights. The website provides a list of all ALFs in Florida along with the number of deficiencies between 2013 and 2018.
Several measures were constructed from these data. The rate per 1000 individuals in each Florida county was calculated for the number of nursing home beds, the number of ALF beds, the number of home health agencies operating in a county, and the number of homemaker and companion services agencies operating in a county. Nursing home quality was the county average of CMS’ nursing home star rating scores. ALF deficiencies were the county average of the number of deficiencies cited between 2013 and 2018.
Analysis
The analysis focused on the availability of LTC options and the quality of skilled nursing in all 67 Florida counties and proceeded in several stages. The primary objective of this exploratory analysis was to see if availability and quality varied by demographic group and their concentration by place. First, descriptive statistics were calculated for all variables. Next, ordinary least squares regression weighted by county size was used to regress the rate of nursing home beds, the rate of ALF beds, the rate of home health agencies that serve a county, the rate of homemaker and companion services agencies that serve a county, the average nursing home star rating, and the average number of ALF deficiencies occurring between 2013 and 2018 on the demographic variables. The next section presents results from these analyses.
Results
Table 1 presents a summary of county-level descriptive statistics. The mean county-level rates per 1000 people was 4.37 nursing home beds, 5.35 ALF beds, .07 home health agencies, and .10 homemaker and companion services agencies. The average nursing home rating was 3.7 and the average number of ALF deficiencies was 460.
Figures 1, 2, 3, 4, and 5 present these data cartographically. Figure 1 shows how the 65 and older population is distributed across Florida counties and Figs. 2, 3, 4, and 5 show the geographic distribution of LTC options. The county with the largest 65 and older population (58%) is Sumter, located in central Florida (see Appendix Fig. 6 for a map of Florida with county labels). In general, the largest 65 and older populations are located in central and southwest Florida.
Figure 2 shows the nursing home bed rate per 1000 by county. North Florida has the largest concentration of nursing home beds.
Figure 3 shows the ALF bed rate per 1000 by county. North Florida has several counties with a high rate of ALF beds (5–16 per 1000) and many counties with 0–2 beds per 1000. In central and south Florida, ALF beds tend to be concentrated along the coast.
Figure 4 shows the number of home health agencies per 1000 by county served. North Florida has very few home health agencies per 1000 people, with most counties having between 0 and .03. Most are located in central and south Florida, with Palm Beach, Broward, and Miami-Dade counties having the largest number of agencies.
Figure 5 shows the number of homemaker/companion agencies per 1000 by county served. Unlike the distribution of home health agencies, North Florida has several counties with a greater number of homemaker/companion agencies per 1000. Taken together, these figures show that the distribution of LTC options are not even across the state or across the population 65 and older.
Table 2 shows regression results between demographics in Florida and LTC availability and quality weighted by county size.
Model 1 regresses the rate of nursing home beds per 1000 individuals on the percentage of those 65 and older and race/ethnicity, controlling for older individuals below 125% of poverty line and whether the county is rural. The coefficient for percent Hispanic is the only significant predictor in the model (b=−.09, p < .05). For every one-unit increase in the percent Hispanic, the nursing home bed rate decreases by .09.
Model 2 regresses the rate of ALF beds per 1000 individuals on race/ethnicity. None of the predictors was significant in this model.
Model 3 regresses the number of home health agencies per 1000 people that serve a county on the percent 65 and older and race/ethnicity. The percent Hispanic was significant and positive (b=2.51, p<.001). Whether the county was rural was significant with rural counties being associated with a decrease in the rate of home health agencies (b =−60.32, p <.01).
Model 4 regresses the number of homemaker and companion services agencies per 1000 people that serve a county on the percent 65 and older and race/ethnicity. The percent Black was significant and positive (b = 2.39, p <.01) as was the percent Hispanic (b=1.44, p <.05). Rural counties were associated with a significant decrease (b=−66.64, p <.001) in the number of homemaker and companion agencies.
Models 5 and 6 regress nursing home and ALF quality measures on the percent 65 and older, race/ethnicity, poverty, and whether a county was rural. Three counties—Glades, Liberty, and Union—did not have nursing homes, so they are not included in model 5. Similarly, 9 counties—Dixie, Franklin, Gilchrist, Glades, Jefferson, Levy, Taylor, Union, and Wakulla—did not have ALFs, so they are not included in model 6. None of the measures was significantly related to nursing home quality. The percent Hispanic was significant and positively related to the number of ALF deficiencies (b = 75.56, p < .001) and whether the county was rural was negatively related to the number of deficiencies (b =−848.08, p < .05).
In sum, findings indicate that race/ethnicity and rurality—but not the concentration of older people in general—may contribute to the availability of some LTC options and quality. The percent Black in each county was positively related to the availability of homemaker and companion services. The percent Hispanic was negatively associated with the rate of nursing home beds and positively associated with the number of home health agencies, homemaker and companion agencies, and the number of ALF deficiencies. Whether a county was rural was negatively related to the number of home health agencies, the number of homemaker and companion agencies, and to the number of ALF deficiencies. Contrary to expectation, the percent 65 and older was not associated with LTC availability or quality.
Discussion
About ½ of those who are 65 and older will need some form of LTC in their lifetimes and most would prefer to receive services in their homes or communities [7]. Planning for the delivery of LTC services would ideally take into consideration the needs of the 65 and older population, including making services available near where they live. The findings in the current study suggest that this may not always be the case—with the maps and regression results showing that higher concentrations of older people are not necessarily associated with a higher level of LTC service availability or quality of care—implying that decisions made about where to locate these services are likely not based on the needs of this population and that there are, perhaps, unmet needs. LTC policy makers and planners should be concerned with offering several LTC options—less restrictive home care and assisted living for those who require lower levels of care—and skilled nursing for those who need higher levels, located near the populations they are intended to serve. Rebalancing efforts may not be realized until different options are available.
The interests, however, of the 65 and older population are receiving less attention with the decline of the old age welfare state and a general cultural devaluation of older people [32,33,34,35,36,37,38]. Improvements in the well-being of this group via Medicare, Medicaid, and Social Security are being challenged by efforts to privatize, at least in part, key programs and services for older people including LTC [39,40,41]. This perhaps signals that concerns such as profit making, privatization, and cost control have overtaken the interest in providing services to improve the health and well-being of the older population.
The current study finds that the geographic availability of nursing home beds, ALF beds, home health agencies, and homemaker/companion agencies are not related to the geographic distribution of the 65 and older population. Private equity has increased its investment in LTC—particularly in nursing homes and ALFs—over the last few decades [42]. Much of this investment has been made in Florida [43]. Private equity interests in LTC lie primarily with the real estate where ALFs and nursing homes are located. Prior research shows that once private equity invests in nursing homes, for example, it increases the debt ratio of the nursing home chain, protects investors by establishing limited liability companies, separates nursing home operators from the property company, and extracts rent [42, 44]. Under the pressure of private equity, nursing homes are sometimes forced to close [42]. Most assisted living is private pay and private equity would benefit from locating ALFs near older populations that have the means to afford higher cost care [45]. The current study also finds that the geographic location of ALFs is not related to the population 65 and older. Instead, the maps show that higher concentrations of ALFs are located along the coasts in central and south Florida where the real estate values are some of the highest in the state [46]. Therefore, it is possible that decisions about where to locate LTC services are in part, based on long-term investment opportunities in real estate.
Furthermore, Certificate of Need (CON) policy in Florida has likely affected the number of nursing home beds across the state. CON regulates the number of newly constructed nursing homes, nursing home beds, and nursing home expansion with the aim of controlling health care price inflation by only allowing expansion that is based on community need for nursing homes. It does not, however, regulate the number of ALFs or home health and homemaker/companion services. In 2001, Florida’s legislature implemented a moratorium on nursing home construction and expansion with few exceptions. The moratorium lasted until 2014 [47]. Meanwhile, Florida’s aging population continued to grow and the moratorium on nursing home construction likely resulted in a lack of beds in the communities where older people live. Future research could examine differences across states in terms of their 65 and older population, LTC availability, affordability, expansion of Medicaid, LTC regulations including CON, real estate values, and reimbursement rates to see if having a larger older population results in policies and programs that are more favorable to this population.
The finding that Hispanic people have less access to nursing home beds could help to explain—at the macro level—the long-standing finding they tend to avoid nursing home care—it is perhaps just not an option where they live. Assisted living might not be an attractive option for Hispanic individuals either—this study found that the percent Hispanic was associated with a greater number of ALF deficiencies. This difference could in part be due to the fact that Hispanic Floridians are generally located in urban areas which are associated in this study with greater ALF deficiencies. The percent Hispanic was also not associated with the availability of ALF beds—indicating that this option is not making up for the lack of nursing home beds. Yet, Hispanic individuals, due to lifetime chronic illnesses, have greater rates of disability in older ages making the likelihood of needing some sort of formal assistance greater [48, 49]. This study found a greater number of home health and homemaker/companion agencies in counties with a higher Hispanic population, perhaps buffering the lack of residential care. Planning for LTC service delivery for this population will require predicting the growth and rising impairment levels in the future and attention to culturally competent nursing care. Future research should take into consideration macro factors like availability of LTC options in addition to individual level factors like preference, health status, ability to pay, and so on to gain a full understanding of the factors driving LTC use.
Findings regarding the percent Black and LTC availability and quality suggest that Black and White older individuals did not differ in their geographic availability of options, except in the case of the number of homemaker and companion service agencies where a larger Black population was associated with a greater number of these agencies. The former is consistent with national data that suggests that nursing home use among Black older people is increasing and the lack of disparities in availability perhaps supports this trend. However, more studies will need to be conducted as other studies have consistently found Black-White disparities in a wide range of health care access and utilization issues—many of which have to do with lack of health care options in the Black community.
This study also found rural/urban differences. Rural counties were associated with fewer home health and homemaker/companion agencies which could reflect the lack of health care availability and services in rural areas generally. Previous research has found, for example, that rurality is associated with less access to home and community options, a greater number of nursing home beds, fewer direct care workers, affordability issues, and a fragmented delivery system due to multiple funding sources [50,51,52]. The finding in the current study that rural counties were associated with a lower number of ALF deficiencies could indicate that ALFs in rural counties provide better care, similar to other findings on nursing homes in rural areas. Older people living in rural ALFs have lower levels of disability and are more likely to private pay [53] perhaps leading to lower care needs and, thus, fewer deficiencies. Because about 25% of older people live in rural areas—a percentage that is expected to grow in the future—policy makers and LTC providers could improve service delivery by making more LTC options available in rural areas [54]. Future research could focus on why there are rural/urban differences in LTC availability especially with regard to labor force availability and the population 65 and older.
Limitations
While this study provides important insights into the availability of LTC, it does have several limitations. The first is that the analysis was limited to one state which limits the findings’ generalizability, although, this one state exploratory study could be a model for other states to replicate their LTC availability. A second limitation is that more specificity with regard to the home care and homemaker/companion analysis could be made down to the level of the number of aides and homemakers/companions. The third limitation is that the findings are based on aggregated data without the ability to drill down to individual level decision-making, processes, and outcomes. This study identifies important differences in availability of LTC at the macro level which helps to fill in gaps in our knowledge from previously conducted individual level data studies. Ideally, future research would match individual level data on nursing home, ALF, and home care (along with payment sources, income, wealth, and other individual factors) use with macro-level geographic LTSS availability to more fully understand the interplay between individual level usage factors and macro level availability. The fourth limitation is the inability to distinguish between long-term and short-term providers, especially important when considering demographic differences in nursing home usage and home health care. Finally, this study uses cross-sectional data which gives a snapshot at one point in time and limits the ability to determine if the types of LTC services used are related to individuals responding to limited access or providers locating where the demand for certain services is high. Future studies should track trends in availability vs. population characteristics over time.
Conclusion
In sum, this study contributes to the literature on LTC availability and quality by comparing several LTC options across demographic groups and place, demonstrating that these options are not distributed evenly, likely affecting availability and use at the macro level. While proximity to LTC is just one measure of access to care, the results of this study indicate that the needs of the 65 and older population could be better represented at the local level. Although policy makers may have limited influence over where providers locate, tax or other financial incentives could result in at least modest changes to the distribution of the supply of LTC options and hopefully improve access in historically underserved communities.