Handbook of Rural Aging

Lenard W. Kaye, Lenard W. Kaye

• Publisher: Routledge
• Year: 2021
• ISBN:
  9781000334364
• Edition: 1
• Topic: Sciences sociales
• Subtopic: Sociologie rurale

The Handbook of Rural Aging goes beyond the perspective of a narrow range of health professions, disciplines, and community services that serve older adults in rural America to encompass the full range of perspectives and issues impacting the communities in which rural older adults live. Touching on such topics as work and voluntarism, technology, transportation, housing, the environment, social participation, and the delivery of health and community services, this reference work addresses the full breadth and scope of factors impacting the lives of rural elders with contributions from recognized scholars, administrators, and researchers. This Handbook buttresses a widespread movement to garner more attention for rural America in policy matters and decisions, while also elevating awareness of the critical circumstances facing rural elders and those who serve them.
Merging demographic, economic, social, cultural, health, environmental, and political perspectives, it will be an essential reference source for library professionals, researchers, educators, students, program and community administrators, and practitioners with a combined interest in rural issues and aging.

1
Adult Day Services

William A. Zagorski

Introduction

Home and community-based services (HCBS) continue to be the fastest-growing sector of long-term supports and services in the U.S. (Harris-Kojetin, Sengupta, Lendon, et al., 2019) and adult day services (ADS) are a vital and cost-effective subset of HCBS. “ADS are professional care settings in which older adults, adults living with dementia, or adults living with disabilities receive individualized, therapeutic, social, and health services, for some, or all of the day” (National Adult Day Services Association, 2018). This definition is inclusive of several different models of noninstitutional care provided across the United States mostly to older adults with cognitive or physical limitations, and younger individuals with intellectual or developmental disabilities. ADS centers provide services to participants in the programs, as well as a much-needed break (respite) to caregivers, allowing them to fully engage in the community.

ADS Models and Participants

ADS are not regulated at the federal level, and therefore the regulations, licensing, and service delivery models vary widely from state to state (O’Keefe, O’Keefe, & Shrestha, 2014). In fact, some states do not regulate or license ADS at all, while others license ADS as a general social service, like childcare. In other states, ADS is licensed into differential levels of care dependent on the services provided. In general, ADS can be categorized as a social model, including respite, medical model, or a combination of both. Social model programs generally focus on socialization and some preventive services for the participants, and respite for caregivers. Medical model programs, more commonly known as adult day health care (ADHC), or Medical Adult Day Care (MADC) provide health assessment, treatment, stabilization, and therapeutic services in a social setting while still providing respite to caregivers. No matter the model of the program, the services provided generally address many facets of daily living, including but not limited to nutrition, transportation, socialization, therapeutic recreation, health or health-related care, and caregiver respite.

At the center of ADS and ADHC is the provision of health and related services by means of assisting with activities of daily living (ADLs) and instrumental activities of daily living (IADLs). Of the more than 4,800 ADS providers across the U.S., currently serving more than 280,000 individuals, more than 90% of ADS centers provide assistance with ambulation and transfers, toileting and personal care, and feeding assistance. Some 65–85% of ADS centers provide meals and nutrition to the participants, most at no charge. Many centers provide transportation services to and from the facilities. Nearly half of centers provide on-site therapeutic services (recreation therapy, art therapy, music therapy, speech therapy, physical therapy, etc.) while the vast majority provide ongoing active and social supportive services. Furthermore, more than 80% of centers offer some health-related services such as blood pressure and weight monitoring, diabetic management, and medication assistance. Nearly 65% of ADS providers offer significant nursing supports and services including medication administration, injections, wound care, and other health and mental health-related services (Harris-Kojetin L, Sengupta, Lendon, et al., 2019; MetLife, 2010). The services are provided by on-site, direct care staff and professionals of multiple disciplines, including nursing, social work, activity therapists, nutritionist, and more. In addition to the services provided to the participants in the programs, ADS provide respite to the caregivers, thus allowing them to fully participate in the community through ongoing employment, volunteerism, exercise, and socialization and have meaningful engagement in the community.

ADS are the most diverse sector of long-term care with participants more representative of the population. Roughly 16% of participants are African American and more than 22% are Hispanic. While 42% of participants are Caucasian, nearly 20% are non-Hispanic and non-African American, more than double the number served in residential settings. ADS participants range in age from 18 to well over 100, with roughly 64% of participants over the age of 65 and 58% of participants are women, according to the 2016 National Study of Long-Term Care Providers. One of the most striking trends in the last decade has been the inclusion of service provisions to individuals of varying physical, cognitive, and intellectual diagnoses. Only 30% of ADS participants suffer from Alzheimer’s and other dementias, while the remaining majority suffer from a myriad of other chronic conditions such as heart disease, arthritis, asthma, kidney disease, diabetes, hypertension, and osteoporosis; physical disabilities such as cerebral palsy, post CVA, morbid obesity, Huntington’s Disease, and ALS; and intellectual and developmental disabilities such as Down Syndrome, Grave’s disease, autism, and more (Harris-Kojetin, Sengupta, Lendon, et al., 2019). Together, ADS provides comprehensive services and support to individuals who would otherwise rely on institutionalization, and thus allow them to age-in-place for the remainder of their lives.

Funding for ADS varies similar to regulations and licensing and is highly complex. To date, traditional Medicare does not pay for ADS; however, Medicaid programs remain one of the main direct payors of ADS services, paying for over 65% of participants’ receipt of services at some level. In addition to Medicaid programs, the Veterans Administration is the second largest public assistance funding source, followed by Medicare Programs for the All Inclusive Care for the Elderly (PACE) programs, National Family Caregiver Support Program, and as of 2019, some Medicare Advantage (MA) plans have begun paying for ADS as a supplemental benefit. MA plans will soon cover more ADS (among other services) and these benefits are expected to significantly expand in the coming decade. Additionally, most long-term care insurance plans provide reimbursement for ADS, although less than 5% of participants possess such plans. Not-for-profit providers can assist participants and caregivers through grant funding and donations; however, private funding remains the second most common payment source, covering nearly 25% of participants (Harris-Kojetin L, Sengupta M, Lendon J, et al., 2019). ADS remain the most cost-effective long-term care (LTC) service, averaging less than $72 per day across the U.S. (Genworth, 2018).

Challenges and Trends in Rural Areas

The greatest challenge in rural, micropolitan, and even many urban and suburban areas is access to care. There are two main issues that prevent access: availability of services and transportation to those locations. While there were more than 4,600 ADS locations in 2012 (likely 8,000–10,000 as of 2019), over 85% are in urban or suburban areas (Harris-Kojetin, Sengupta, Lendon, et al., 2019). Of the remaining 15%, two-thirds are in micropolitan areas (populations centers between 10,000 and 50,000) and one-third are in rural areas, meaning there are less than 500 ADS centers in rural areas of the U.S. There are countless reasons behind this, but the more prominent is the viability and sustainability of an endeavor in a rural setting. No matter the regulatory environment where the ADS center is located, appropriate and cost-effective space must be available for a facility. Freestanding buildings of the appropriate size are often more costly than attached, or semi-detached suites in marketable locations, either of which may not be available in rural settings. The cost of renovations is often an excluding factor, as appropriate Americans with Disabilities Act (ADA)-compliant bathroom space, cooking and food service space, and activity and office space must all be available and approved by local and state authorities, making new openings capital intensive. Once a decision is made to open a location and the approved renovations are complete, some of the ongoing challenges for operators is the nationwide caregiver shortage. Direct care staffing in LTC, as well as professional staff (business operations, nonprofit management, nursing, social work, therapeutic recreation, etc.) can be a challenge in any arena but is often extremely difficult in a rural setting, because of the limited availability of trained and willing personnel in close proximity. The weather patterns are another issue in many areas of the U.S. Many rural locations in the Northeast and Northern U.S. are not able to remain open during colder months because of impassable roads and conditions that are not conducive for older adults, frail adults, or younger individuals with disabilities or mobility restrictions to safely leave their homes. This causes ADS centers to operate in a seasonal manner, which is challenging to long-term viability. Compounding the lack of locations, many older adults and individuals with disabilities do not have reliable or cost-effective access to transportation services, preventing participation in ADS centers altogether. Finally, there are significant social pressures and stigmas in the ADS arena. Not only do many participants not want to “go to day care” or feel that they “don’t need help,” there is also the stigma associated with the caregiver’s accepting the need for and accepting the time for a break in the caregiving responsibilities. Taken together, the challenges of ADS use, especially in rural areas, are many, but many creative solutions can already be found.

Over the past decade, the LTC industry has expanded and continues to change based on the needs of the baby boomer generation. ADS has continued to innovate with this expansion as well. What began as general social support services has expanded into a multilevel continuum inclusive of services for individuals of all acuity levels. Along with the expansion of the care continuum, the marketing and terminology have changed and continue to change. The primary area of expansion has been the medical model ADHC services discussed earlier. Two additional models that have shown value in rural areas in addition to helping to expand the continuum of ADS are respite and early memory care (EMC) programs. Some states have identified programs, generally associated with religious organizations, that offer services for individuals in a central location for a limited number of hours and days, thus allowing regular respite for caregivers, and licensure exemptions (e.g., Tennessee). The Brookdale Foundation Group provides modest grants as startup funding for group respite programs. Not only have respite programs been shown to be beneficial to caregivers (Zarit, Kim, Femiaa, Almeida, & Klein, 2014), many have also seen modest success in rural areas. The rural success can be partially attributed to the low overhead when partnering with religious institutions, as well as reduced staffing needs due to the dearth of volunteerism in local communities. The issue of stigma remains, and many programs have started framing respite as a positive day out with friends for participants, instead of merely respite for a caregiver. Long-term sustainability in these programs remains in question but has also led to the advent of EMC and similar other programs as a next step. EMC programs funded by the Brookdale Foundation Group have shown success recently and can generally be viewed as a next step in the ADS care continuum. These programs serve individuals with mild cognitive impairments and early stages of dementia and utilize evidence-based programs to stimulate memory and cognitive exercises, while still providing respite for caregivers. These programs have the potential to supplement group respite and ADS in rural communities.

Further expanding on the continuum of ADS services, as well as reducing the stigma of terminology, many organizations that began in urban areas have expanded their programs into multilocation, multilevel programs to include ADS and ADHC. Some companies have expanded through franchise opportunities into urban, suburban, micropolitan, and rural areas, thereby meeting the needs of the individual communities. Many organizations in the south (specifically Tennessee and Kentucky) have found success in expanding services by opening satellite locations in suburban and micropolitan areas surrounding an urban core. The concept of satellites, or hub and spoke models of ADS is not new and has been successful in several states and opens the door to further expansion in the coming years. Another innovative concept in rural access to ADS is mobile adult day care. Although the terminology suggests a mobile facility, it refers to multiple centers to be operated in rural communities and the staff and operation of which are mobile. These programs have been shown to be successful in Georgia and may be a model for expansion in other states across the U.S. but would require legislative action in most areas.

Assuming many of the previously mentioned solutions were implemented across rural America, the limiting factor of available, accessible, and affordable transportation still exists. Most urban cores have accessible paratransit systems, some even free for older or disabled individuals (Pittsburgh); however, micropolitan and rural areas have severely limited publicly funded transit programs. There are many federal resources available for rural areas and local municipalities to create or expand on existing transit infrastructure through the National Aging and Disability Transportation Center and the National Rural Transit Assistance Program. There are additional resources and funding available for rural transportation initiatives through Grantmakers in Aging. Some organizations have found success in creating, maintaining, and managing temporary group respite “meeting locations” where multiple individuals from rural areas can meet at a safe access point and an ADS provider can transport all participants at a predetermined time to the center and return them at a drop-off time. This concept only works in some areas because of licensure and regulations and is only viable with paid support or regular volunteerism and safe weather conditions. Other communities have found moderate success in recent volunteer transportation initiatives. In Tennessee, the Senior Volunteer Transportation Network is a recent program consisting of older adults providing volunteer hours to transport other older adults within a given area. The program started in multiple sites in 2018 and currently serves more than 20, mostly rural counties, with plans to open 10 more each year for the next two years. Public funds and grants help to sustain and expand such programs, which rely heavily on volunteer hours as well. Ride-sharing organizations have begun to feel the market pressures to offer discounted rates to older adults, and industry analysts believe these organizations will soon expand their ability to offer quality and reduced cost transportation services to older and disabled adults throughout the networks.

Conclusions and the Future of ADS

The ADS industry has seen a prolific expansion over the last two decades. Participants, caregivers, professionals, and many others readily agree that this expansion will continue well into the next two decades. Many challenges remain across the ADS continuum, most notably, access to care and network adequacy, and others, such as the digital divide in rural settings, social networks in smaller communities, lack of health-care access, and increased chronic ailments in rural America. Many of the trends and benefits of ADS focus on the cost and social determinants of health of participants and caregivers. Additional research is ongoing and shows the benefits of ADS to include significant reduction of high cost health-care utilization and the value of standardized measurement of outcomes in ADS (Anderson K.A., Geboy L., Jarrott S, et al., 2018), which will allow for a standard language to be used when discussing these benefits. This will allow larger health systems to engage providers in all settings and help promote the expansion of ADS across all communities, especially in rural settings where network adequacy is not yet near attainment. Additiona...