13 Aging, End-of-Life, and the Disability Community

Alexandria Lewis, Ed.S., MSW, LCSW

This chapter explores the process of aging with a disability and acquiring a disability while aging. The chapter starts with a historical context of the field of gerontology and disability. Next, demographics of older disabled adults are examined and several approaches to categorizing age. Service trends discussed consist of the medical model, access to services, and aging in place. Cultural elements, including quality of life, disability perspectives on medical aid in dying laws, and advance care planning are examined. Key aging policies and programs relevant to disabled people in the U.S. are discussed. The chapter also includes disability-related debates in aging and practice implications. The chapter concludes with a case study and discussion questions.

Absent from traditional gerontology textbooks is the inclusion of details about aging with a disability; when disability is mentioned, the focus is on older adults who acquire a disability in late life (Putnam, et al., 2021; Westwood & Carey, 2019). Putnam et al. (2020) defined persons aging with disability as: “Individuals who experience the onset of disability in early life or mid-life who continue to experience disability over the life course” (p.3). Also, disability studies do not always incorporate the experiences of individuals who acquire a disability in late life, focusing instead on younger populations with disabilities (Kahana & Kahana, 2017; Putnam, et al., 2021). The goal of this chapter is to help fill in the gap in the literature by considering disability, aging, and end-of-life.

Challenges in exploring the intersection of gerontology and disability include the differences in how disability is discussed in the field of gerontology. Gerontology tends to view disability among older adults through a medical model (Kahana & Kahana, 2017; Putnam, et al., 2021). Gerontology textbooks tend to focus discussions on disability as related to activities of daily living (ADLs) and instrumental activities of daily living (IADLs), and there is little discussion on disabled persons who age with disability. Whereas traditional gerontology concepts such as ‘successful aging’ have focused on the goal of avoiding disability in late life, ‘successful aging’ through the lens of disabled persons is viewed differently. Since aging is multidimensional and intersectional, one chapter cannot address all the nuances of aging and disability. Therefore, we should re-envision how we view aging because this population is diverse, and the changing landscape of our aging society is critical to consider.

History

From a historical standpoint, the separation of disability from aging can be seen with the approaches gerontology took to address stereotypes and discrimination against older adults. Ageism and ableism are essential to understand since ageism and ableism influence how disability is viewed in late life. Ageism is discrimination and prejudice based on age, and ableism is discrimination and prejudice toward disabled persons. Butler (2005) coined the term ageism in 1968 based on his observations of the treatment of older adults in society. He witnessed negative language used about older adults when he was in medical school and when he worked in nursing homes during the 1950s and 1960s. He explored the abuse of older adults in the 1960s, and healso witnessed the negative reactions of people in his community when housing was being built for older adults. Butler (2005) recognized ageism could take place at any age; however, due to the extent of how society treated older adults, he emphasized ageism as the discrimination of older adults. Ageism can be individual or institutional, also referred to as structural. Structural ageism is defined as “the discrimination directed against older persons by policies of institutions and the actions facilitated with them” (Levy, 2022, para. 2). Institutional ageism includes employment discrimination, health care policies based on age (organ transplantation), and negative portrayals of older adults on television shows and commercials (Nelson, 2005). Other chapters have discussed institutional ableism, such as employment discrimination, quality access to healthcare, and access to accessible housing—[See Chapter 10].

One way the field of gerontology sought to address ageism was by presenting aging in what was perceived as a ‘positive light,’ which included conceptualizing terms like successful aging, productive aging, active aging, and aging well (Urtamo et al., 2019). Concepts, such as successful aging, emphasized the absence or avoidance of disability in late life. For instance, Urtamo et al. (2019) noted, “the concept of successful and healthy ageing has been generally associated with longevity, and the absence of disease and disability….” (Physiological function section). Kim and Park (2017) conducted a meta-analysis of the ‘correlates’ of successful aging, and they organized themes into four categories. The first category related to the ‘absence’ of disease and disability; another type was connected to ‘high’ functioning. Bowling and Dieppe (2005) found some older adults associated their level of physical functioning, psychological functioning, productivity, accomplishments, and social roles with ‘successful aging.’ Unfortunately, the ‘positive light’ of aging was presented as the absence of disability. From a historical perspective, the unintended consequence of the field of gerontology reframing aging to address ageism has been to segment disability as something that does not happen to most older adults; thus, attempting to reassure nondisabled people that aging for most folks is ‘disability-free.’ Disability in late life is presented as unfavorable and something to avoid (Kahana & Kahana, 2017). Disability and aging have not been co-considered until relatively recently (Kahana & Kahana, 2017).

Prevalence and Life Expectancy

An important consideration in understanding populations and implementing service delivery is prevalence data. Sometimes, demographics about older adults use language that describes the population increase of older adults in a fatalistic manner, presenting the older adult population as a crisis. Terms like ‘aging tsunami’ and ‘the graying of America’ present aging as something that will quickly take over the landscape and damage society. This message sends a negative image of aging. The FrameWorks Institute (n.d.) emphasizes the importance of solutions and avoiding fatalism due to the message this sends to the public. Prevalence data should also be viewed through an intersectional lens. As demographics evolve, using a solution-focused rather than a problem-based lens can help shift the narrative about living in an aging society.

The disability status prevalence for any disability in the U.S. was 43.6% for persons 65 years and older (Disability and Health Data System, n.d.). Disability types included self-care (6.1%), cognitive (9.9%), hearing (16.2%), mobility (27.7%), vision (7.4%), and independent living disability (9.9%). Independent living is the ability to complete tasks (e.g., errands, transportation, cooking, cleaning) in the community without assistance, also referred to as instrumental activities of daily living (IADLs). Mobility disability had the highest prevalence (27.7%), and self-care disability comprised the lowest prevalence (6.1%) of the other functional disability types. Self-care is similar to activities of daily living (ADLs) (e.g., dressing, bathing, eating). Disability prevalence among older adults tends to focus on IADLs and ADLs. The 2018 National Center for Health Statistics age-adjusted percentages showed 68.6% of adults 65 years and older experienced “any level” of functional difficulties, 45.6% reported “some difficulty,” and the third category was “a lot of difficulty or cannot do at all, with 23% responding in this category (NCHS, 2021).

Approximately 54 million persons in the U.S. were 65 years and older in 2020 (Administration for Community Living [ACL], 2021). In 2020, there were 6.6 million adults 85 years and older (ACL, 2021). Approximately 40% (2 in 5) of adults 65 years and older have a disability (Disability and Health Promotion, n.d.). Chapter one of this textbook discussed the overall prevalence of disability. The overall prevalence of disability has increased, and the prevalence of disability increases as individuals age (Kraus et al., 2017; Campbell & Putnam, 2021). Also, the prevalence of having more than two disabilities increases with age.

Life expectancy at birth in the U.S. was 77 years in 2020, and females had a higher life expectancy of 79.9 years, whereas males had a life expectancy of 74.2 years (Murphy et al., 2021). There are differences in life expectancy when comparing geographic location and race/ethnicity. The U.S. state with the highest life expectancy was Hawaii at 80.7 years, and the lowest life expectancy 71.9 years in Mississippi (Arias et al., 2022). The highest life expectancy for race/ethnicity was non-Hispanic Asian, and the lowest was 67.1 for Non-Hispanic American Indian or Alaska Native. The COVID-19 pandemic has impacted overall life expectancy, especially for non-Hispanic Black men and Latino men, who experienced 2.9-3 years drop in life expectancy (Perry et al., 2021). The leading causes of death for adults 65 years and older were heart disease, cancer, and COVID-19 (National Center for Health Statistics, 2020).

Race and Ethnicity

Of the 54 million population of older adults in 2020, around 24% compromised racial or ethnic minoritized persons: African American (non-Hispanic) 9%, Hispanic origin 9%, Asian American (non-Hispanic) 5%, American Indian and Alaska Native (non-Hispanic) 0.6%, Native Hawaiian/Pacific Islander (not Hispanic) 0.1%, and two or more races 0.8%. Overall (all ages), one in ten Asian Americans, three in ten American Indian and Alaska Native, one in six Native Hawaiian and Pacific Islander, one in six Hispanic Americans, and one in four Black Americans live with a disability.

Sexual Orientation and Gender Identity

Because of the lack of national data, population estimates about LGBTQIA+ older adults vary (Choi & Meyer, 2016). Most LGBT data about older adults primarily explores gender identity and sexual orientation (Choi & Meyer, 2016). There are around 1.75 to 4 million LGBT older adults 60 years and older (Choi & Meyer, 2016). Approximately 8.1% of persons 65 years and older identified as LGBT, and 8.6% of persons 55-64 identified as LGBT (U.S. Census Bureau, 2021).

Fredericksen-Goldsen et al. (2011) conducted a nationwide community-based survey of more than 2,500 LGBT adults ages 50-95; 44% were 50-64, 46% were 65-79, and 10% were 80 years and older. Of the 2,500 survey respondents, 44% reported physical or mental problems that limited their physical activities. Around 20% of the participants in the survey reported utilizing durable medical equipment (special beds) and assistive devices. About 47% of respondents had a disability; of the 47%, older adults who are transgender had the highest percentage of disability (62%); LGB adults 50 years and older had higher rates of disability than heterosexual older adults (Fredericken-Goldsen et al., 2011). Women were more likely than men to report disability, and disability increased with age (Fredericken-Goldsen et al., 2011).

Victimization of LGBT older adults was connected to poor mental health, including depression (Choi and Meyer, 2016). In addition, internalized stigma was associated with increased depression and disability. In comparison to heterosexual older adults, LGBT older adults are at higher risk of disability, physical limitations, and mental health. LGBT adults with HIV have higher rates of disability than LGBT adults who do not have HIV (Choi & Meyer, 2016).

Poverty and Income

This section provides an overview, whereas Chapter 10 details employment, housing, and poverty. There are several variables that impact poverty rates in old age, such as race/ethnicity, gender identity, financial assets, access to employment with pension plans, financial resources to invest, home ownership, and household size. Since disability in late life is often described based on ADL and IADL functioning, economic data about this population does not typically separate poverty and disability data.

Poverty data can be challenging to understand due to how poverty data are calculated and the purpose of the data. Poverty data is issued by the U.S. Census Bureau (poverty thresholds) and by the U.S. Department of Health and Human Services (poverty line/guidelines). Poverty guidelines are used for eligibility of some government programs, and the purpose of poverty thresholds is to calculate data about persons in poverty. The U.S. Census Bureau also produces the supplemental poverty measure, which takes into consideration shelter, utilities, and food expenditures. In contrast, the poverty threshold is based on a decades-old calculation of the minimum food diet in 1963. The official poverty threshold measure is gross income (before taxes);the supplemental poverty measure (SPM)  subtracts taxes, work expenses, child support paid to a different household, and medical expenses. Since the SPM provides a better view of poverty, the poverty information will focus on SPM.

The 2021 poverty threshold for a 65-year-old household who resided alone was $12,996 (U.S. Census Bureau, n.d.). In 2019, 8.9% of older adults were below the 2019 poverty line, also referred to as the poverty threshold (ACL, 2020). When the supplemental poverty measure (SPM) is applied to persons 65 years and older, the poverty measure was higher at 12.8% in 2019 (ACL, 2020). The difference in the rates between the SPM and the poverty line was due to out-of-pocket medical costs (ACL, 2020). In 2017, 30.1% of persons 65 years and older (15 million) experienced poverty below 200% of the poverty line, and utilizing supplemental poverty measure this percentage increased to 42% of older persons (21.4 million) living 200% below the SPM poverty line.

Poverty rates among older adults increase with age for both poverty threshold and supplemental poverty measure rates. Forty percent of adults 80 years and older (4.6 million) had incomes below 200% of poverty in contrast to 24.9% of adults 65-69 years (Cubanski et al., 2018). The poverty percentages increase when applied to the supplemental poverty measure, with 52.6% of adults 80 years and older (6.1 million) with incomes below 200% of poverty older in comparison to 35.8% of adults 65-69 years. Health status (fair/poor, good, and excellent/very good) indicate differences in poverty rates (Cubanski et al., 2018). The rate of poverty below 200% of poverty based on SMP almost doubles for older adults with fair or poor health (56.9%) in contrast to 30.9% for adults with excellent or very good health.

Older women experience higher rates of poverty than men (Cubanski, et al., 2018; ACL, 2020). Forty-six percent of women 65 years and older (12.6 million) based on the supplemental poverty measure had income considered below 200% of poverty. Thirty-seven percent of men in the same age category (8.3 million) had incomes below 200% of poverty (Cubanski, et al., 2018). Men 65 years and older also had a higher median income ($36,921) than women ($27,398) 65 years and older (ACL, 2020). African American older women (31.7%) and Hispanic women (32.1%) living alone had the highest poverty rates (ACL, 2020). Sixty percent (60.3%) of Black women (2.6 million) and 65.6% of Hispanic women 65 years and older (2.7 million) had incomes below 200% of poverty using the SPM.

Poverty rates also vary based on geographic location for older adults are also essential to understand. For example, there were 11 states where 45%-51% of older adults lived below 200% of poverty based on the SMP: New York, New Jersey, Washington D.C., Mississippi, Massachusetts, Louisiana, Kentucky, Georgia, Florida, Arkansas, and Hawaii (Cubanski et al., 2018).

Chapter 10 of this text addresses employment, housing, and poverty in greater detail. Employment, housing, and poverty impact people as they age with disability. The accumulation of financial wealth is impeded when disabled people are discriminated against in the hiring process, paid lower wages, pay more for accessible housing, etc. Approximately 2.3 million adults 65 years and older receive an average of $468 a month for Supplemental Security Income (Social Security, 2021.). To qualify for Supplemental Security Income (SSI), individuals “must be disabled, blind, or at least 65 years old and have limited income and resources” (Social Security Administration, n.d.).

Overall, for older adults, the sources of income consist of Social Security, pensions and retirement accounts, employment earnings, and property, to name several. Forty-eight percent of households 55 years and older did not have retirement savings in 2016, a 4% decrease from 2013 (U.S. Government Accountability Office, 2019). The average monthly benefit for Social Security retirement benefits in December 2020 was $1,497: females received an average of $1,322 and males an average of $1,689 (Social Security Administration, 2021). The average monthly survivor benefits for disabled widow(er)s were $770: females received $787, and men received $588. Older adults with lower income obtain most of their income in old age from Social Security retirement and Supplemental Security Income (Thompson & King, 2022). In comparison, older adults with higher income receive more of their income from retirement plans, pensions, and financial assets other than federal government-subsidized retirement accounts (Thompson & King, 2022). Therefore, discrimination and oppression can significantly impact a person’s earnings, which is magnified for persons who age with disability due to the discrimination they receive in employment.

Categorization of Aging

Utilizing chronological age to describe older adulthood is challenging because each person has a unique life course with diverse life experiences. Functional age (also referred to as functional status) is distinct from chronological age. The focus is on impairments and disability, which some suggest is more relevant for eligibility for some service delivery (Morgan & Kunkel, 2016). Life stage relates to changes and transitions, including retirement, raising grandchildren, and health changes (Morgan & Kunkel, 2016).

There are several approaches to categorizing age, such as chronological age, functional age, and life stages (Morgan & Kunkel, 2016). Perspectives about older adulthood will continue to shift as the social construction of aging evolves. Context is useful when examining aging concepts because how society views and discusses aging will continue to evolve. For example, Bernice Neugarten is recognized in the field of gerontology as coining the terms “young-old” (55-75 years old) and “old-old” (75 years and older) in the 1970s (McCoyd et al., 2019; Settersten & Godlewski, 2016). Neugarten (1974) noted the challenges of using chronological age to categorize older adulthood and separated the age categories based on financial resources, education attainment, and health status. It is essential to note the demographics she examined were White men and women in 1970. To illustrate, Neugarten referred to the “young-old” as those “who are relatively healthy, relatively affluent, relatively free from traditional responsibilities of work and family and who are increasingly well educated and politically active” (p. 187). Additional age categories include “young-old” (65-74 years old), “middle-old” (75-84 years old), “old-old” (75-84 years old), and “oldest-old” (85 years and older) (Settersten & Godlewski, 2016; Corr et al., 2019; McCoyd et al., 2019).

Service Trends

Medical Model

The medicalized focus on aging services versus a social model approach has influenced the field of gerontology. Bowling and Dieppe (2005) concluded, “The medical model is so dominant that few health professionals are aware of psychosocial ageing. The result is a focus on the burden of old age, the decline and failure of the body” (para. 2). Unfortunately, there is a lack of information about how people with disabilities in late life can live fulfilling lives (Kahana & Kahana, 2017). There is an absence of research about the experiences of disabled people in aging and end-of-life services and individuals coming into disability identity as they age. The view of disability in late life is focused on IADLS and ADLs, and the emphasis on ‘successful aging’ has placed more emphasis on the ‘avoidance’ of disability, leaving out information about how to live well with a disability in late life. Individuals with disabilities live with dignity and experience a quality of life that should not be determined or defined by those without disabilities. In reality, institutional ableism has treated disabled people in ways that affect their ability to live well and with dignity. It is imperative to move past the medical model to support disabled people as they age and nondisabled people who acquire a disability in later life.

Opening Access to Services

Telehealth

Older adults with disabilities deserve universal access to programming, and the adaptation of services virtually needs to continue moving forward. During the COVID-19 pandemic, the Centers for Medicare and Medicaid Services (CMS) expanded telehealth services under a waiver which increased access to remote care and services. The CMS changes allowed Medicare payment for telehealth visits in the home, which previously were only approved for designated sites (e.g., clinics, medical facilities, hospitals) in rural areas (U.S. Department of Health and Human Services, n.d.). Providers could bill for video and audio-only services, similar to in-person services. The CMS encouraged providers to use implement the use of telehealth to provide service delivery, including medical consultation, nutrition counseling, eye exams, routine health care, wellness visits, and mental health services. The expansion of covered telehealth services involved home visits, therapy services, initial nursing facility and discharge visits, and emergency department visits (U.S. Department of Health and Human Services, n.d.). The positive of the pandemic has been the flexibility of service delivery, granting access for persons in their homes. The CMS will continue to allow billing for telehealth (mental health) services through the year 2023 (American Psychological Association, 2021). Disabled older adults deserve to receive universal access to services in the home, and there is no evidence that telehealth services are not capable of providing quality services.

Senior Centers

The COVID-19 pandemic quickly required service providers to adapt their in-person services. While in-person interactions are unique from virtual interactions, older adults with disabilities can benefit from virtual options. Around one million older adults receive services from senior centers (Wacker & Roberto, 2019). Most senior centers are funded by the federal government and offer home-delivered meals, legal services, transportation services, congregate meals, information and assistance, benefits counseling, recreational and social activities, and health and fitness programs (Wacker & Roberto, 2019). The National Council on Aging (n.d.) surveys senior centers, and senior centers adapted service delivery because of the pandemic. Forty-eight percent of respondents indicated an increase in the number of older adults they served since the fall of 2020. Some of the services introduced or increased were home-delivered meals, virtual education on chronic disease and falls, benefits counseling, and take-home meals, to name several (National Council on Aging [NCOA], 2021a).

Marmo et al. (2021) examined virtual services offered by a senior center in New York. There was no significant difference between in-person senior center participation and virtual participation (sample size 113) for LGBTQ older adults who attended senior centers (SAGE). SAGE (New York City headquarters) provides service delivery for older LGBT adults. They have five senior centers in New York. Most of the older adults (82.7%) already had established friendships with at least four friends from the senior center, and they continued these friendships during the pandemic. The senior center offered various virtual programming, including fitness classes, support groups, meditation, social meet-ups, and arts-related programming, to name several. The top program attended was the exercise program; around 52% of the older adults participated in these programs. The main barriers to virtual services were access to Wi-Fi, and some older adults do not have devices (e.g., computers, tablets, smartphones) equipped to connect virtually (Marmo et al., 2021). In addition to these barriers, accessibility is also essential, such as language access (e.g., closed captioning, interpreter). For instance, when there are virtual support groups and social meet-ups, these programs should have an interpreter so persons who communicate using sign language can fully participate in the groups.

The NCOA (2021b) received a three-year $750,000 grant from the Administration for Community Living (ACL) to help modernize senior centers through the development of a Modernizing Senior Centers Resource Center. The goal of this grant is to assist senior centers as they adapt to a changing society. The NCOA will offer senior centers training, technical help, and share resources to innovate programming. As the NCOA supports the modernization of senior centers, continued access to virtual services is critical.

Aging in Place

‘Aging in place’ is not a one-size-fits-all approach. At the center of aging in place should be the disabled older adult in determining what services they prefer to remain at home to live with dignity. ‘Aging in place’ consists of the social environment (e.g., personal assistance, programming that helps reduce socialization) and physical environment (e.g., transportation, home modification, technology safety monitoring devices, assisted devices) supports, which influence whether a person can age well at home (Gitlin et al., 2013). The focus of ‘aging in place’ models is functioning (ADLs and IADLs).

An example of an aging in place model is the Community Aging in Place—Advancing Better Living for Elders (CAPABLE) program developed by Sarah Szanton at John Hopkins University seeks to support older adults with low income who prefer to remain in the community (John Hopkins University, n.d.). CAPABLE provides the support of a registered nurse, occupational therapist, and a professional who can repair homes for four to five months (Gitlin et al., 2013). An essential element of the CAPABLE program is goal setting by the older adult who determines their own goals (Szanton et al., 2014). The goal of CAPABLE is to provide short-term assistance using assessment and goal setting with disabled older adults. CAPABLE consists of education, home modification, fall prevention techniques, pain management, medication management, and problem-solving skills. (Szanton et al., 2014). Most older adults reside in the community, and ‘aging in place’ programs are essential in supporting older adults with disabilities in meeting their goals. Programs like CAPABLE have been found to improve quality of life and are more cost-effective than long-term care facilities (Szanton et al., 2014).

People who age with disability can and do take an active role in directing their care, including choosing care professionals. Kahana and Kahana (2017) used the term ‘care-getter’ to refer to the active role of consumer-driven disability services. Their expectations will be unique to adults who acquire a disability when they age, whereas, in late life, there tends to be more emphasis on caregiving vs. care-getting. Aging in place needs to be at the forefront to ensure disabled older adults receive optimal community-based care.

Cultural Elements

Quality of Life

Ableism and the medical model influence perceptions about older adults with disabilities and what constitutes ‘quality of life.’ In a survey of 714 physicians, most (82.4%) believed nondisabled persons have a better quality of life than disabled persons (Iezzoni et al., 2021). Disability perceived as a burden is detrimental to the quality of care for older adults with disabilities. Jacob et al. (2016) concluded, “The effects of healthy lifestyle factors on the proportion of future life lived free of disability indicate that the disabled period can be compressed, given the right combination of these factors” (Section: Conclusion). These views about the quality of life affect how disabled older adults are treated in the health care system.

Disability Perspectives: Medical Aid in Dying Laws

Medical aid in dying laws, also referred to as physician-assisted suicide and death with dignity, are not without controversy. There are 11 jurisdictions in the U.S. with medical aid in dying laws (Death with Dignity, n.d.). Death with Dignity Acts allow an adult deemed competent with a terminal illness (six months or less to live) to receive a prescription for a lethal dose of medication (Corr et al., 2019). There are differing opinions on whether physician aid in dying should be legal. Rarely are the perspectives of disabled advocates about physician-assisted suicide.

Not Dead Yet (NDY) is a disability rights group that views medical aid in dying laws through the lens of the historical oppression of disabled people, including from health care professionals. Disabled persons have experienced forced sterilization that was codified into law in many U.S. States, and the U.S. Supreme Court upheld the sterilization of disabled people. Also, medical treatment decisions made by some medical professionals are based on disability status, such as COVID-19 protocols in many hospitals (Kliger and Steinbach vs. Healey and O’Keefe, 2022). NDY and other disability groups are involved in an amicus brief in an assisted suicide case. In this brief, Kliger and Steinbach vs. Healey and O’Keefe (2022) outlined the discrimination of disabled individuals in medical settings, the implicit bias of medical professionals, and the primary reasons for assisted suicide laws being related to disability. The NDY movement points out that being disabled should not be a legal reason for suicide, and they view disability “as the heart of the assisted suicide debate” (Section: Unacceptable Losses). In an Oregon Death with Dignity Act report, primary end-of-life concerns were disability-related: losing control of bodily functions (37.6), burden on family, friends/caregivers (53.1%), loss of dignity (71.8%), losing autonomy (93.1%), unable to engage in activities for life enjoyment (94.3%), concern about pain control or “inadequate pain control,” (32.7%), and medical care costs for treatment (6.1%) (Public Health Division Center for Health Statistics, 2021). Disabled persons have fears of how disability-related experiences are labeled as reasons for physician-assisted suicide.

Disability Perspectives: Advance Care Planning

Advance care planning is a process and can include selecting a health care proxy who can speak on behalf of a person if they are unable to communicate their health care decisions; and/or completing an advance care planning document such as a living will and advance directive. Advance care planning is defined as:

a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness (Sudore et al., 2016, Section: Results).

Unintentionally, ableism is embedded in how the quality of care is discussed, and some of the content in advance care planning centers on disability. An example of statements in an advance care planning document for when a person is ‘seriously ill,’ “I would not want medical treatments to try and keep me alive if I could no longer: live without being permanently hooked up to a breathing machine, recognize family and friends, talk to family and friends, feed, bathe or take care of myself, live without severe pain or discomfort, and live well enough to make every day decisions” (UCLA Health, n.d., p. 2). At the end of this section, there is an option to check “None of the above apply. My life is always worth living, no matter how sick I am” (UCLA Health, n.d., p. 2).

A disability perspective is rarely infused into information about advance care planning. Coleman (2012) emphasized the importance of viewing advance care planning through a balanced perspective to ensure a person’s wishes are respected (Coleman, 2012). Coleman (2012) presented the following question, “Are advance directives always to refuse treatment, never to request it?” (p.10). Coleman (2012) highlighted a comparison of futility policies vs. advance directives whereby futility policies are based on biases about quality of life, predictions about prognosis, and driven by the medical team instead of the patient/family. Coleman (2012) mentioned the importance of designating someone to make health care decisions due to the process that occurs when there is no health care proxy documentation available. Some states have surrogate decision-making laws when a person does not have an identified health care proxy, and these laws have a hierarchy for who can make decisions for the person. The typical order is (1) married partner (2) adult child (3) parent (4) adult siblings (Coleman, 2012). Coleman (2012) discussed a problem with this hierarchy because the person in the order might not necessarily be the best person to make these decisions, such as patients who experience intimate partner violence and abuse from their partner or adult children.

There must be a balance when discussing advance care planning to ensure the person’s wishes are respected and not the wishes of the persons making the decisions (Coleman, 2012). The perspectives of disabled persons is vital to finding balance to end-of-life decision making. Diane Coleman emphasized the balance as, “..recognition that concerns about overtreatment must be balanced with protections against undertreatment” (Coleman, 2012, Section: Conclusion).

Policies

There are entire textbooks that focus on aging and disability policies, and the goal of this information is to provide a general overview of policies related to Medicare, Medicaid, and home and community-based services. Chapter four of this text offers more information about health and personal care services.

Social Security Act Overview

The Social Security Act has 21 titles and covers disability insurance, retirement, temporary assistance for families with low income, maternal and child health, blind and visual impairment, supplemental security income (SSI), health insurance for disabled individuals and older adults, children’s health insurance program, medical assistance programs, unemployment insurance, and social services grants, to name several.

Medicare Overview

Adults 65 years and older who pay into Medicare through payroll taxes are eligible for Medicare Part A (hospital insurance) and Part B (medical insurance). Medicare premiums for adults 65 years and older will depend on how many quarters (quarters of coverage) they have paid through their Medicare payroll taxes (Congressional Research Service, 2020). Adults 65 years and younger who receive social security disability cash benefits for two years are eligible for Medicare Part A, and persons with end-stage renal disease of any age are eligible for Medicare Part A (CRS, 2020). In 2020, approximately 54 million older adults and nine million disabled adults were covered by Medicare (CRS, 2020). In addition, about 7.2 million older adults with low income are enrolled in Medicaid and Medicare, referred to as dual eligibility. The total Medicare revenue for the fiscal year 2019 was 794 billion dollars (CRS, 2020).

Medicare consists of four parts: Part A (hospital insurance), Part B (supplemental medical insurance), Part C (Medicare Advantage), and Part D (optional prescription plan). Medicare Part A and B are typically referred to as original Medicare (CRS, 2020). Medicare Part A covers inpatient hospital care, hospice care, home health care, and nursing home short-stay rehabilitation care. Medicare Part B covers durable medical equipment, ambulance services, mental health (inpatient and outpatient), and some outpatient prescriptions. Medicare Part C is optional and considered a private plan and is optional. Medicare Part D is also optional. Medicare requires deductibles and coinsurance for inpatient services, and Part B has a deductible (annual) and coinsurance (20%) for services (CRS, 2020).

Medicare and Home Health

Medicare does not cover long-term home and community-based services. Medicare Parts A and Part B cover short-term home health rehabilitation-related services. Medicare requires a physician or other “allowed practitioner” to certify beneficiaries need one or more rehabilitation-related services (e.g., physical therapy, occupational therapy, skilled nursing care, medical social services, speech-language pathology, short-term personal care). Another requirement of Medicare home health is ‘homebound status’ (i.e., beneficiary requires assistance to leave their home due to illness or injury). Medicare homebound status can also apply to persons with a mental health diagnosis where they are unable to leave their home, and a physician/allowed practitioner evaluates the person as not safe to leave their home without assistance (CMS, 2022). Medicare home health does not cover 24-hour nursing services, home-delivered meals, or help with IADLs. In addition, Medicare does not provide personal care if personal care is the only service requested. Home health companies that are eligible to bill for Medicare are required to be certified by Medicare (CMS, n.d.-a).

Medicare and Nursing Home Care

Similar to Medicare home health services, Medicare does not provide long-term nursing home coverage. Instead, Medicare covers short-term skilled rehabilitation services (e.g., speech-language pathology, occupational therapy, skilled nursing, physical therapy) in certified nursing homes with eligibility requirements: (1) Three-day ‘qualifying stay’ in a hospital (2) Medicare Part A (3) Physician assessment that the individual needs skilled services (4) Benefit period has days left for skilled services (CMS, n.d.-a). Medicare pays 100% for days 1-20, days 21-100 there is a $194.50 daily coinsurance, and after 100 days, Medicare beneficiaries are responsible for total costs (CMS, n.d.-b). The coinsurance is not a fixed rate and typically will increase each year.

Medicaid Overview

Medicaid is considered a means-tested health care program (e.g., eligibility, income) and is regarded as a voluntary program. All states and the District of Columbia participate in Medicaid and the federal government and state government fund Medicaid. U.S. states and the District of Columbia had the option to expand the coverage of Medicaid under the Affordable Care Act to adults who have an income of up to 138% of the federal poverty level. Federal funds were provided to the states who expanded Medicaid. As of February 2022, the District of Columbia and 39 states expanded Medicaid (Kaiser Family Foundation [KFF], 2022). While states administer Medicaid and are allowed some choices in administering Medicaid, there are federal requirements for mandatory services. For example, inpatient hospital services, outpatient hospital services, long-term nursing home services, physician services, home health services, rural health clinic services, and laboratory and x-ray services are some of the mandatory services required by the federal government (CMS, n.d.-c).

Medicaid provided coverage to around seven million disabled adults under 65 (Musumeci & Chidambaram, 2019). Total Medicaid expenditures for the fiscal year 2019 were 627 million dollars across all 50 states and the District of Columbia (CRS, 2021). Medicaid expenditures for older adults and disabled adults were 54% of Medicaid expenditures in the fiscal year 2017 (Congressional Research Service, 2021). Medicaid is considered the primary payee for Long-Term Services and Supports (LTSS), paying approximately 44% of LTSS (CRS, 2021). LTSS consists of home and community-based services and nursing home care. The 2018 estimated national LTSS spending was 379 billion, and Medicaid LTSS spending was 52% of the overall federal LTSS spending at 196.9 billion (Watts et al., 2020).

Community-Based Services

The 1999 Olmstead vs. L.C. is considered a critical Supreme Court decision ruling the Americans with Disabilities Act prohibited the segregation of disabled adults in institutions and that community-based options should be made available when appropriate. The Olmstead case is based on Elaine Wilson and Lois Curtis, who were not discharged from a state-run psychiatric unit for several years even though their treatment was completed. This monumental ruling has set a positive precedent for other cases to be filed against entities that do not provide community-based services, where appropriate. For instance, in 2016, the Department of Justice indicated Louisiana was in violation of the Americans with Disabilities Act because services were not delivered in community settings for people with serious mental illness; they were being admitted into nursing homes instead of the community (U.S. Department of Justice, n.d.).

Medicaid Home and Community-Based Services

Home and community-based services (HCBS) are vital to ‘aging in place.’ The only requirement by the federal government for home and community-based services for Medicaid is home health services. Optional HCBS services include personal care services (assistance with household and self-care), Community First Choice (attendant services for persons who qualify for institutional services), Section 1915 (i) (e.g., case management, rehabilitation, respite services, homemaker services, home health aide, personal care services, adult day health services, and mental health), Section 1915 (c) and Section 1115. Sections 1915 (c) and Section 1115 are referred to as Medicaid HCBS Waivers. Waivers provide some flexibility in how states can tailor their programs. Most states offer optional HCBS services, and most Medicaid HCBS spending is for optional services (CRS, 2021). HCBS 1915 (c) provides the same services as Section 1915(i). In addition to these services, states can implement enrollment caps, target specific populations, implement geographic limits, and waive income and asset limits. Eligibility requires individuals who would also meet the requirements for institutional care (Watts et al., 2020). Under Section 1115, states can implement HCBS enrollment caps and use Medicaid funding for demonstration projects and pilot programs that the federal government would not usually fund under Medicaid. HCBS Section 1915(c) enrollment was the highest at 1,806,600 enrollees (48 states). The total enrollment of Waiver programs for the fiscal year 2018 was 2.5 million (Watts et al., 2020). The enrollment numbers show the importance of HCBS programs, and these programs need to be expanded to provide support to disabled older adults. In 2018, there was an estimated 185,774 disabled older adults on waiting lists for enrollment in Medicaid Section 1915(c) HCBS waiver programs (KFF, n.d.).

As mentioned in the aging in place section, disabled adults who age with a disability are used to self-directing their care. How many individuals participate in HCBS self-directed personal care plans is unknown because all states do not report these data. However, in 15 states out of the 20 that reported these data, around 700,000 people engaged in self-directed personal care state plans. These plans allow individuals to take an active role in their service delivery by hiring their direct care workers, terminating their direct care workers, and determining the hours of their direct care workers.

Money Follows the Person

The Money Follows the Person (MFP) is a demonstration program created under the 2005 Deficit Reduction Act (Section 6071). The MFP gives grants to help states improve home and community-based services, to increase access to HCBS for Medicaid recipients who might otherwise reside in an institution, and to support people on Medicaid who want to move from institutions to the community. The underlying premise behind the MFP is for Medicare recipients to have the opportunity to reside in the community instead of in an institutional setting. When the MFP was first established, 1.75 billion dollars was allocated for a five-year period to offer grants to states (Hargan, 2017). Participation in the MFP is voluntary, and states apply for grant awards to participate in the MFP.

The institutions for eligibility are hospitals, nursing homes, intermediate care facilities for persons with intellectual disabilities (ICF/ID), inpatient psychiatric facilities with patients 21 years and under, and “institutions for mental diseases” for older adults (65+). In addition, the MFP has specific parameters on what constitutes a “qualified residence”: (1) Housing owned or leased by the individual or their family (2) Residing in an apartment requires a lease directly with the landlord (individual lease), an exit to the outside (egress), ability to lock the apartment, and control over their living space (3) Small group homes (4 unrelated residents and under). The Deficit Reduction Act initially used a residence time frame of six months in an institutional setting as part of the eligibility parameters; however, the Affordable Care Act reduced the residence requirement to 90 consecutive days. The residence requirement has since been reduced to 60 straight days, and short-term rehabilitation days can now count towards the 60 days time frame (Colello, 2021).

The MFP participants can receive HCBS through Section 1915(c), and demonstration services are services participants cannot access under their HCBS services (Hargan, 2017). For instance, demonstration services may include assistance with assistive technologies and additional personal care services. The goal of the demonstration services is to support individuals through the adjustment process of moving from an institutional setting to a community setting; the demonstration services are short-term (Hardan, 2017). According to the law, Medicaid cannot pay rental costs for participants, and some participants experience barriers to locating housing due to rental costs and availability (Colello, 2021). After participants transition into the community, they can receive support from the MFP program for one year (Liao & Peebles, 2019).

The MFP has successfully assisted more than 100,000 individuals in moving from institutional settings into the community from 2008-to 2019 (Congressional Research Service, 2021). States can choose populations to target their MFP demonstration project, and states can decide which institutional settings to focus (Liao & Peebles, 2019). Forty-four states have participated in the MFP demonstration project. Oregon, Wyoming, Utah, Arizona, New Mexico, Florida, and Alaska do not have MFP programs (Musumeci & Chidambaram, 2019).

The MFP has helped enhance the quality of life of disabled individuals who prefer to reside in the community, and the program is more cost-effective than paying for institutional placement (Gottluch, 2021). To illustrate, the average monthly cost of a nursing home is $7,698 for a private room and $6,844 for a semi-private room (Administration for Community Living, n.d.). Nursing home costs vary depending on geographic location and amenities offered. Funding for the MFP has continued to be extended and funds appropriated through various legislation such as the Affordable Care Act and Medicaid acts. The Coronavirus Aid, Relief, and Economic Security Act extended the MFP funding through the end of November 2020. Recently, the Consolidated Appropriations Act extended the MFP funding through the end of September 2021. The total funding appropriated for the fiscal year 2021 through 2023 is $1.35 billion, which amounts to $450 million each fiscal year (Colello, 2021).

Residential Care Communities

Around 918,700 older adults, 65 years and older, resided in residential care communities (Caffrey et al., 2021). The grouping of residential care communities consists of assisted living facilities, adult foster care, board care homes, personal care homes, and board care homes. Most residents who lived in residential care communities were female (67%), non-Hispanic white (89%), and 85 tears and older (55%). Most residents (61%) in residential care communities received assistance with three or more ADLs: eating (26%), toileting (49%), dressing (62%), walking (69%), and bathing (77%). States have different licensing rules and regulations for assisted living care facilities. When a type of residential setting is licensed with a state, there will be specific regulations these settings need to follow. The Centers for Medicare and Medicaid Services does not regulate state-licensed-only facilities. Some assistance with ADLs is typically provided in assisted living facilities. Some states have more specific requirements for assisted living facilities than others, such as the ability for the individual to leave the building independently without staff assistance. Depending on the state, some older adults with disabilities may not be eligible for certain levels of care based on the assistance provided by the type of residential setting. Some of these types of residential settings are private pay and do not accept Medicaid; however, some states allow the use of Medicaid funding in assisted living facilities.

Senior and Disability Housing

Some geographic locations have public housing apartments tailored for disabled and older adults. Usually, these apartments are means-tested, and there is a certain percentage of rent individuals pay. Some housing accepts vouchers, such as Section 8 (Jurkowski, 2019). These residential settings are tailored to older adults and adults with disabilities, so they are required to meet environmental accessibility standards (e.g., apartment layout, bathrooms, elevators).

Long-Term Care

There were approximately 1.7 million licensed nursing home beds, and 15,600 nursing homes in 2016 (National Center for Health Statistics, n.d.). In 2020, 1.3 million (1,290,177) residents residing in certified nursing facilities (KFF, n.d.-c). Nursing home care as a long-term level of care requires adults to meet specific criteria for admission, such as some level of assistance with ADLs and IADLs, and assistance with medication administration (National Center for Health Statistics, 2019). Some nursing homes provide short-stay rehabilitation. Approximately 83.5% of persons who live in nursing homes are 65 years and older, and 38.6% are 85 years and older. Additional demographic characteristics of individuals who use nursing home long-term (100 days or more) show 67.9% were women, 75.6% were White (non-Hispanic), and 85.1% were 65 years and older (National Center for Health Statistics, 2019). The top diagnoses of individuals who had long term stays were high blood pressure or hypertension, Alzheimer’s disease (58.9%), depression (53%), heart disease (38.8%), diabetes (32.2%), and arthritis (29.7%). Nineteen percent of persons who resided in nursing homes in 2016 experienced a fall before their nursing home admission (National Center for Health Statistics, 2019). Medicaid is considered a primary financial funder of nursing home care, spending 55 billion dollars on nursing home care in 2015 (KFF, 2017).

Hospice Care

The National Hospice and Palliative Care Organization (NHPCO) does not present data on disability in its annual reports. Therefore, there is a lack of information about persons who age with a disability who receive hospice care. Hospice is a philosophy of comfort care and support for patients with a life-limiting illness (i.e., prognosis of six months or less). Hospice is a benefit of Medicare, and hospice providers certified by Medicare have regulation guidelines that govern the range, level, and quality of services offered to patients, families, as well as staffing requirements. The hospice team comprise an interdisciplinary group of social workers, physicians, nurses, chaplains, bereavement counselors, and hospice aides. The goals of hospice care include symptom management, pain management, medication management, family education, and psychosocial and spiritual support of the patient and their family. The four different levels of care provided are routine hospice care, continuous home care, inpatient respite care, and general inpatient care. Most hospice care provided to patients is routine hospice care offered in the location a hospice patient identifies as home (e.g., nursing homes, assisted living, and private residences). In 2019, 1.61 million Medicare beneficiaries received hospice care, and Medicare paid 20.9 billion for hospice services in 2019. The majority of persons who receive hospice services are 85 years and older. The primary diagnoses related to the hospice patient’s life-limiting illness were Alzheimer’s/Dementia/Parkinson’s (one category), cancer, severe malnutrition, circulatory/heart, stroke, and kidney disease (NHPCO, 2021).

Disability-Related Debates in Aging

Voices of Disabled Individuals

The voices of disabled individuals are essential to consider when exploring these topics. Lankasky (2004) discussed successful aging started during childhood in learning how to live in a society that doesn’t include disabled people, learning how to “fall and get back up,” and building self-esteem. Lankasky (2004) also mentioned the importance of having supportive parents who allow them to make mistakes and grow. When Lankasky (2004) started experiencing additional disability, they asked one of the following questions: “How do I give up the social status that this society seems to assign to standing straight and walking tall?” (p. 17). Lankasky (2004) shared they were not always included in health care decision-making, “I am the primary expert when it comes to knowing what is different about my body and my functioning today compared with yesterday. I have incredible valuable input to add to the corpus of information so much of my health care is based on…” (p. 16).

Judy Heumann (1947-2023) is a well-known international disability rights activist and author of Being Heumann and Rolling Warrior. She has been referred to as the mother of the disability rights movement. Judy has mentioned instead of using the term ‘able-bodied,’ we should use the word nondisabled because anyone at any time can become disabled. This language shifts the narrative of disability as something foreign and reduces the ‘othering’ of disability.

Alice Wong is also a well-known international disability rights activist and the founder and director of the online community Disability Visibility Project. She is a writer and editor of Disability Visibility: First-Person Stories from the Twenty-First Century. Alice Wong shared her experiences living with a disability during the pandemic. In this Vox article, she discussed medical rationing and problems with the concept of ‘quality of life.’ Alice Wong aptly stated:

Even the notion of “quality of life” as a measurable standard is based on assumptions that a “good” healthy life is one without disability, pain, and suffering. I live with all three intimately and I feel more vital than ever at this point in time, because of my experiences and relationships (Wong, 2020, para. 8).

Older Adults and Disability Identity

More research is needed to explore disability identity in adults who acquire a disability when 65 years and older – and in people who have acquired disability earlier in life who are aging. First and foremost, social workers should be respectful of how people self-identify. Being aware of the nuances of disability identity in late life is helpful in gaining insight into how people view their experiences. Some older adults who may be classified as disabled due to activities of daily living do not necessarily identify as disabled. The reasons they might not identify as disabled are not fully understood. Kelly-Moore et al. (2006) suggested some older adults might view their experiences as part of normal aging (as cited in Williamson and Fried, 1996). Some older adults who were nondisabled throughout their life course may not see a connection to ‘disabled’ as part of their identity and life experiences since they have been nondisabled for most of their lives. The authors noted, “disability carries negative social meaning, and little is known about when (or if), in the process of health decline, persons identify themselves as disabled” (p.126).

Kelly-Moore et al. (2006) conducted a four-year panel study of 1,000 residents from three Florida retirement communities. The residents they examined were 72 years and older, and most were White. An interesting aspect of this study is Kelly-Moore et al. (2006) explored disability identity and whether there were changes to self-identification as disabled. They noted men were less likely than women to view themselves as disabled. The population of older adults more likely to view themselves as disabled was individuals with cognitive impairment, more limitations in functioning, and more health conditions. How nondisabled people who acquire a disability in late-life perceive disability is unique from those who age with a disability. For instance, the inability to drive and receiving home health services increased an older adult’s “perceived disability.” Even when an older adult did not have functional status problems, they were more likely to identify as being disabled if they had several health conditions. In addition, if someone had strong social support, including family, they did not necessarily view themselves as disabled.

While there is a lack of research on the experiences of nondisabled adults who acquire a disability in late life, it can be hypothesized they will experience disability differently than persons who age with a disability (Kahana & Kahana, 2017). Persons who acquired a disability as a young adult or middle-aged adult are more likely than someone who acquired a disability in late life to have disability pride as part of their identity. Conversely, those who become disabled in late life may reject disability identity (Kahana & Kahana, 2017). Some disabled persons experience the internalization of ableism, resulting in attempts to hide their disability from others, and some persons with disabilities may separate themselves from persons with different disabilities (Nario-Redmond, 2020). Some people might use a few strategies to distance themselves from their disability, such as not disclosing their disability to others and not using assisted devices (Nario-Redmond, 2020). For instance, some older adults who do not identify as disabled or who want to hide their disability may choose not to use assistive devices or refuse assistance at home (Kahana & Kahana, 2017). Some older adults choose not to use hearing aids because they do not want others to know they have a hearing impairment. For instance, there are hearing aid companies that advertise their hearing aids are discreet, and the commercials emphasize others will not know they are wearing hearing aids. This messaging contributes to ableism, as if there is something wrong with hearing impairment that people should hide from others.

Life Course Perspective

There is a lack of research on disability and aging across the life course (Kahana & Kahana, 2017). Disability should be viewed through a life course perspective lens because individuals with disabilities are not homogenous and have different life experiences. As Kahana and Kanaha (2017) noted, “The way that illness and disability affect daily life is embedded within the life course” (p. 77). Disabilities acquired in late life can be transitions or turning points for people who have lived as nondisabled for most of their lives. People can also be affected by timing specific to societal norms about disability. To illustrate, if the messaging people receive is disability is to be avoided, this messaging impacts how some people view acquired disabilities. More research should explore how people with disabilities in late life can live fulfilling lives (Kahana & Kahana, 2017).

Chronological age cannot be viewed in isolation because aging occurs across the life span and life course. The life course perspective considers cohort, transitions, life events, trajectories, and turning points as contributing to a person’s life experiences (Hutchison, 2017). For example, the Healthy Brain Initiative for Alzheimer’s disease and other dementias uses a life course perspective from birth to death, reflective of a lifelong development approach to examining Alzheimer’s disease (Alzheimer’s Association & Centers for Disease Control, 2018). Human agency recognizes people actively engage in their own lives and make decisions on how to survive, despite the barriers they may face due to discrimination, oppression, and lack of opportunities (Wilmoth & London, 2013; Hutchison, 2017). Individuals, groups, families, and communities are affected by historical context. Within the life course perspective, timing (as opposed to chronological age) relates to when life events and transitions occur, and linked lives are connections like social relationships and interdependence (Wilmoth & London, 2013).

Erikson’s 9th Psychosocial Developmental Stage

This section focuses on the 8th and 9th stages of Erikson’s psychosocial developmental theory. For information about stages 1-8, refer to the following resource: Erikson’s Eight Stages of Development.

While Erikson and Erikson (1998) developed a 9th psychosocial developmental stage, this stage is not incorporated into some textbooks. Joan M. Erikson wrote the 9th psychosocial development stage based on her collaboration with Erik Erikson (Erikson & Erikson, 1998). She mentioned they engaged in rethinking the last psychosocial development stage once they reached older adulthood. Erikson and Erikson (1998) did not feel the 8th psychosocial development stage captured adults 80 years and older, based on their own aging experiences. Reflection on one’s life was the key component of the 8th stage of integrity vs. despair and disgust. Erikson and Erikson (1998) suggested older adults will experience despair if an older adult does not feel satisfied or fulfilled with their life experiences. Each psychosocial stage has a virtual and developmental task, and wisdom is virtue of the 8th stage.

Erikson and Erikson (1998) indicated persons 80 years and older go through all the psychosocial stages (stages 1-8), with the developmental tasks reversed: mistrust vs. trust, shame/doubt vs. autonomy, guilt vs. initiative, inferiority vs. industry, identity confusion vs. identity, isolation vs. intimacy, stagnation vs. generativity, and despair and disgust vs. integrity. Erikson and Erikson (1998) did not use the language disability; yet their description for several of the tasks related to disability. To share several examples, they discussed the decline of the body and how some people may no longer trust in their physical capabilities, resulting in losing hope (mistrust vs. trust). In shame and doubt vs. autonomy, independence was discussed regarding autonomy over their life. For inferiority vs. industry, value to society was explored (Erikson & Erikson, 1998). In Western culture, the emphasis on productivity and achievement places more importance on what a person ‘does’ and not on their personhood; this cultural aspect relates to ableism and ageism.

Policy and Practice Implications

This section focuses on policy implications and the application of the theoretical perspectives and the practice model from chapter 2 to aging, disability, and end-of-life care.

Policy Implications

Beliefs, values, and ideologies shape how policies are implemented and funded. First, it is important for social workers to acknowledge institutional ableism and ageism and how these perspectives have impacted policy development to address discrimination and oppression. There are also other intersectionality layers (e.g., racism, sexism, heterosexism, classism) that impact service delivery for persons aging with disability and adults who experience disability in older adulthood. Social workers should examine policy through a human-rights lens that extends past a needs-based approach. Minimum standards for accessibility are not acceptable, and disabled individuals should not have to advocate to be treated equally. As Cox (2015) noted, “As social policies aim to address the needs of citizens, they should integrate standards that move beyond meeting basic needs to assure that fundamental rights are being met” (p. 13). The importance of a human rights perspective to policy cannot be overstated. The following quote by Judy Heumann captures the need to think above needs-based policies.

And I’m very tired of being thankful for accessible toilets, you know? I– I really am tired of feeling that way, when I basically feel that, if I have to feel thankful about an accessible bathroom, when am I ever gonna be equal in the community?” – Judy Heumann (Crip Camp Film, 2020).

Social workers should use more active language in discussing discrimination and oppression. Disparities occur because of discrimination and oppression. The systems that create disparities need to be discussed, which creates an active approach to examining systemic oppression, racism, sexism, etc., that results in disparities in the first place. Research should do more than repeat that disparities exist but seek to explore meaningful change through solutions.

Policy implications must include discussions about the importance of home and community-based services and financial support available for disabled older adults to remain in the community, where possible. The America Rescue Plan of 2021 Section 9817 provided additional funding for specific Medicaid expenditures (CMS, n.d.-c). The increased funding was around 12.7 billion dollars. While the time period is April 1, 2021, until the end of March 2022, states are able to spend the additional funding until March 31, 2024 (CMS, n.d.-d). The Build Back Better Framework (n.d.) focuses on the affordability and quality of home care services provided to older adults and disabled individuals of all ages. Funding home and community-based services should be permanent in federal and state government budgets. Social workers can play a significant role in exploring solutions to create meaningful changes through micro, mezzo, and macro work, which is intertwined-social work doesn’t take place in a silo.

Practice Implications

Self-reflection and critical self-examination are vital to becoming aware of one’s own values regarding aging, disability, quality of life, and dignity. Social workers need to recognize how “care getting” and caregiving have presented disabled individuals as passive receivers where society does not view them as contributing to society. The power dynamic inherent in some service delivery is the belief disabled older adults are not capable of self-directing their own care. Social workers should be cognizant that disabled older adults are the experts of their own lives.

Because there is a lack of information about aging with disability and disability culture in late life, social workers should recognize disabled people who age with disability and nondisabled people who acquire a disability in late life have distinct life experiences. Some nondisabled older adults who develop a disability in late life do not identify as disabled, and they may view their disabilities as unfavorable. Nondisabled adults who become disabled in older adulthood might examine their functioning through a lens of internalized ableism. In contrast, persons who age with a disability and who have a strong disability identity will have different expectations. For instance, some disabled persons are used to directing their own care and advocating for themselves.

Anti-oppressive social work requires action and the ability to engage in the deconstruction of dominant narratives. The dominant narrative some disabled older adults experience is disability is viewed as the opposite of successful aging, disabled individuals cannot live with dignity, and disabled persons do not have a good quality of life. The need to reframe concepts like successful aging is paramount to deconstructing the historical narrative of what it means to age well. There needs to be more inclusion of disabled voices about their aging experiences for both disabled individuals who are aging with a disability and nondisabled individuals who experience disability in older adulthood. The concept of quality of life also needs to be deconstructed with a new narrative that disabled people have a good quality of life, value their life, contribute to society, and are more than their assistive devices. Some disabled older adults fear their lives will not be valued if they need acute health care services and that decisions will be made by health care professionals based on their disability. Social workers must acknowledge these experiences and reframe conversations about quality of life in the health care environment. Social workers can create opportunities for older disabled adults to connect with each other because peer support is valuable. Anti-oppressive social workers acknowledge and reinforce the value inherent in disabled older adults. Social workers must deconstruct these dominant narratives while working with individuals, groups, families, and communities in meaningful ways.

Application of Theoretical Perspectives and Practice Model from Chapter 2

Pre-Engagement

The question introduced in chapter two, “How will my social identities impact client engagement?” is a thoughtful question because self-awareness can guide social workers to new ways of being and thinking. Self-reflection and introspection can also foster empathy for the client as a person. Self-reflection requires stepping back free from judgment while examining one’s own lived experiences and how those experiences shape one’s worldview.

Example: A hospital social worker, Amber Taplin (fictitious name), reviews the medical record of a patient, Roy E. Manns (fictitious name), before meeting the patient. In reviewing his electronic medical record, she learns Roy will be discharged from the hospital in three days. The worker notices Roy is a wheelchair user, a 75-year-old White male, and he recently broke his arm in several places. A nurse notes that the patient does not want to be discharged to a skilled nursing facility for physical and occupational therapy, but his goal is to return to his private residence with home health services. Another note by the physician indicates she wants the patient to be discharged to a nursing home because the patient is unsafe to be at home. Finally, a nurse’s note describes the patient as ‘non-compliant’ and not following the physician’s recommendations.

This vignette will be used for the following application of the practice model.

The social worker, Amber, can self-reflect on how a lens of ableism and ageism can shape how she views Roy’s capabilities of returning home. Amber recognizes she is nondisabled and lacks knowledge about social work practice with disabled individuals. Initially, Amber thought Roy would be safer to discharge to the nursing home but realizes her perspective is due to ableism and ageism. Amber envisions that Roy could feel frustrated because the hospital staff are not listening to his preference to return home. The social worker can begin to empathize with what Roy might be experiencing. During this self-reflection, Amber can challenge her beliefs about disability and safety. This reflection process will help Amber be mindful of Roy’s experiences, including intersectionality.

Engagement

The social worker can center herself before entering the patient’s room. Amber acknowledges to herself she is unfamiliar with the experiences of disabled persons who age with a disability; however, she recognizes Roy is the expert in his life. She decided to take cues from Roy. Before entering the room, she knocked on the door and introduced herself as the unit social worker. Roy became upset, thinking Amber would call Adult Protective Services (APS). Before Amber could explain her role, he expressed his frustrations about his preferences being dismissed by the hospital staff. Amber decided not to interrupt Roy to let him share his experiences. Roy continues by sharing that he has been disabled for 50 years and can care for himself at home. Roy’s voice begins to rise, and he tells the social worker he is angry. The social worker validates his frustrations and lets him know she was not there to make an APS report. Roy remarks the nurses and physician never asked him about his goals and what assistance he currently has at home. He shared that directing his own care was very important to him. Amber asked him about his disability identity because disability seemed to be an important part of his identity. Roy shared his history as a disabled activist and how he was on the front lines pushing for home and community-based services. By asking about the patient’s disability identity and validating his experiences, the social worker shows Roy that she views him as the expert in his life and capable of making his own decisions. Roy’s voice softened, and he appeared more relaxed in speaking with Amber.

Assessment

The application of the practice model varies in a social worker’s professional work setting. For instance, in an acute hospital setting where the patient may only be admitted for several days, engagement and assessment might need to occur during the same visit or a few visits. In this scenario, Amber needs to engage in assessment on the same day she meets the patient. Amber recognizes some of the questions in the assessment about quality of life present as ableist, so she adjusts her assessment approach. In self-reflection, she acknowledges that some health care professionals view disabled individuals as having a lower quality of life. Amber does not want to cause further distress for Roy by asking insensitive questions. Initially, the physician wanted the social worker to assess Roy’s ‘behaviors’; however, the social worker recognizes Roy did not have any ‘behaviors’ that would warrant a behavioral health assessment. Roy was advocating for himself and not experiencing a mental health crisis. Amber used a strengths-based approach in assessing Roy’s safety. Amber learned that Roy has a supportive network through the assessment process, and there are no safety issues in his home environment. Amber writes her documentation in the electronic medical record using a strengths-based approach and explains directing his own care is essential to Roy’s quality of life.

Intervention

Amber’s awareness about Roy’s preferences for directing his own care led her to ask Roy if he would like to meet with members of his care team, including the attending physician. Roy is appreciative of the opportunity to meet with several care team members. Roy gave the social worker permission to start the meeting by highlighting her assessment of Roy as he preferred not to repeat the same information in the meeting to the team. The physician shares her concerns about Roy returning home, but after learning more about his experiences, the physician acknowledges that Roy is more than capable of returning home upon discharge. Roy discusses in the meeting his goals for care, and he also mentions he wants to choose the home health agency because he is aware of a few companies that had problems retaining staff. Roy creates a goal of returning home with home health upon discharge with physical and occupational therapy. Roy becomes more open to medical social work due to feeling heard. Rapport-building takes place throughout the different phases of social work practice.

Termination

Amber has the opportunity to visit Roy several times during his hospital stay. A few hours before Roy is picked up by a friend to return home, Amber has her last visit with him. Roy asks Amber whether she would be conducting a home visit, and she realizes she has not been clear about her role in working with Roy during their first visit. Amber shares she will not be able to conduct a home visit to check in on him, but she does complete post-discharge calls to check in on people who are discharged to their private residences. Roy mentions he looks forward to speaking with Amber. She provided Roy with the home health agency contact information, and Roy said he would call the home health agency to follow up.

Evaluation

Amber uses her understanding of intersectionality to reflect on how ageism and ableism contributed to how some hospital staff treated Roy. When Amber conducted the post-discharge follow-up phone call with Roy, she asked Roy what went well with their visits together and what he felt could be improved. Evaluating one’s social work practice requires humility and openness in listening to clients’ perspectives. Amber learned Roy felt positive about his experiences with Amber, but he mentioned how he initially noticed she had some level of discomfort. Amber appreciates Roy’s feedback realizing her discomfort was detectable by Roy. After her phone visit with Roy, Amber self-reflected on ways she could continue to educate herself about people who age with a disability.

Case Study

The following case study is fictitious, and all names have been created using a fake name generator.

Scenario: You are an adult protective services worker who has been assigned a case based on an incoming call to the Adult Abuse Hotline with the allegation of a 72-year-old disabled woman who is living alone in an ‘old house’ with no running water and no heat. The reporter is a hospital social worker.

Arlette C. McCrea returned to her home today from a two-day hospital stay where she was treated for dehydration. The hospital social worker made the hotline call because Arlette left the hospital against medical advice (AMA) and did not want to be discharged from the hospital to a nursing home for physical and occupational therapy. Your supervisor has assigned the hotline report to you to investigate. You call the hospital to speak with the reporter for more details. The hospital social worker shares Arlette is 72 years old and lives alone in an older home that is not habitable. She mentions Arlette has two above the knee amputations due to complications from her diabetes ten years ago. The social worker suspects Arlette has some dementia, but Arlette declined to participate in the mental status assessment. The social worker says Arlette “yelled” at the staff and refused to answer assessment questions. The hospital wanted to keep Arlette for several days and discharge her to a nursing home, but Arlette was adamant about not going to a nursing home. She notes Arlette threatened to call 911 if they tried to ‘kidnap’ her. After two days at the hospital, Arlette called a friend to take her home from the hospital. Arlette left the hospital AMA, and they are concerned for her overall health and safety. The hospital social worker explains she was able to speak with Arlette’s oldest daughter, who resides in Michigan. Her daughter was unable to visit her mother in the hospital because she could not take leave from work.

You arrive at Arlette’s home and knock several times, but there is no answer. After five minutes, Arlette opens the door. You tell her you are there to check in with her to see if she was doing okay. You ask her if you can come inside to check in on her to follow up from her visit at the hospital. You hold your identification badge for her to see. Arlette slowly opens the door with a hesitant look on her face. Arlette mentioned not being able to hear you clearly, so you speak louder. She tells you that you can come inside but only for a few minutes. You realize she is speaking loudly to you because she is hearing impaired.

As you enter the home, you observe the inside of her house. There is a large open area to the left side, and you notice a bed, recliner, television, in the middle of the room and a portable toilet in the corner of the room by a sliding glass door. The room has some dust, but you do not notice anything that makes the home unsafe. There is a closed door to your immediate right and a large staircase down the hall. Arlette is using a manual older wheelchair, and you observe as she wheels herself slowly into the open area with the television, recliner, and bed. Arlette points to a folding chair and says you can sit there because no one was allowed in her recliner.

You ask Arlette what she prefers to be called, and she prefers to be addressed as Mrs. McCrea. You continue to do a visual assessment, noticing Mrs. McCrea’s wheelchair was older and something might be wrong with one of the wheels. While the wheelchair has some problems, you observe Mrs. McCrea can propel the wheelchair. You notice there are two cats in the room. As a way to build rapport, you ask her the names of the cats. She responds warmly, sharing the names of her cats. She shares she acquired the cats 12 years ago from a friend. You notice Mrs. McCrea glance at a large photo of a couple in a wedding gown and suit, and you wonder if the picture might be her wedding picture. You ask if the picture was her wedding picture, and she shares the name of her husband, who died ten years ago. Mrs. McCrea states she does not want to talk about her husband. You respect she does not want to talk about him, so you share more details about your role and the purpose of the visit.

You mention someone shared concerns about her health and safety, and you wanted to check to see if she can meet her basic needs. She expresses concern about being checked on, and you validate her feelings. She propels her wheelchair into another room to show you the refrigerator. She opens the freezer, which is full of frozen meals. You ask her about her utilities, and she mentions her friend set up automatic payments for her bills. You notice she warms up to you, so you continue to let her take the lead during the visit. She wheels back slowly into her living space, but you notice she struggles to turn the wheelchair due to one of the wheels. You do not attempt to push her wheelchair or ask her if she needs assistance. After a few more attempts, she is able to turn the wheelchair.

Mrs. McCrea explains she was at the store with her friend when she passed out, and the store called an ambulance against her will. She said she was angry because she could barely hear the staff and was confused about what was happening and what they were doing to her. You ask Mrs. McCrea permission to come back tomorrow for another visit, and she says that would be okay. Based on the information Mrs. McCrea has been sharing, you realize that she does not present as having cognitive impairment.

You return the next day, and you ask Mrs. McCrea if there is anything you could help with, and she shares it would be helpful if someone could take a look at her wheelchair and mow her lawn. You share a local resource that has a wheelchair donation program, and you also share a local resource from an agency that has volunteers that do yard maintenance for disabled older adults. You ask her if she would like help contacting the agencies, and she mentions that she will have her friend help her with making the calls. You thank Mrs. McCrea for allowing you into her home. You want to check on her bathroom situation, and you ask her about the portable toilet in the corner of the room. She says she only uses the portable toilet for emergencies. She propels her wheelchair to the closed door off to the right and mentions this is her bathroom. You notice her hair is clean, she is wearing clean clothes, and you don’t ask any more questions about her hygiene. You thank her again and remind her to give you a call if she needs any assistance.

Discussion Questions:

  1. What are some ways you could pre-engage with Mrs. McCrea before you arrive for her home visit?
  2. What power dynamics and imbalances may already exist or could occur between you and Mrs. McCrea?
  3. How might you approach this case using an anti-oppressive practice lens?
  4. What are some other ways you would engage with Mrs. McCrea?
  5. What are some approaches you can take in showing Mrs. McCrea she is the expert of her life?
  6. How might ableism and or ageism play a role in the hospital’s perception of Mrs. McCrea?
  7. Why do you think the hospital wanted to discharge Mrs. McCrea to a nursing home?
  8. In what ways could you engage in evaluation of your work with Mrs. McCrea?
  9. What is the role of critical cultural competence for the social worker in this case?

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