© Springer International Publishing Switzerland 2016
Debra A. Harley and Pamela B. Teaster (eds.)Handbook of LGBT Elders10.1007/978-3-319-03623-6_33

33. Disabilities and Chronic Illness Among LGBT Elders: Responses of Medicine, Public Health, Rehabilitation, and Social Work

Debra A. Harley 
(1)
University of Kentucky, Lexington, USA
 
 
Debra A. Harley
Abstract
Aging is frequently marked by chronic conditions and disability involving physical, psychological, and sensory disorders. Individuals with adult or later onset of chronic illness or acquired disability (CIAD) tend to experience more adjustment difficulties than those with early onset. Although most elderly adults remain healthy throughout the aging process, many LGBT elders do have chronic conditions and disabilities that affect their health and successful aging. This chapter reviews disabilities and chronic conditions that affect LGBT elders, challenges they face in dealing with disabilities and chronic illness, and implications of health care and health policy.
Keywords
DisabilityChronic illnessLate onsetAcquired disability

Overview

Aging is frequently marked by chronic conditions and disability involving physical, psychological, and sensory disorders. Normal age-related changes occur within various body systems, affecting physiological, pharmacological, behavioral, and cognitive responses. The rate of disability is higher in the elderly population in comparison with the general population and disproportionately higher in LGBT elders than non-LGBT elders, with the highest rates among ethnic minorities (Espinoza 2011). A disability may be due to a developmental stage of the aging process, the result of an accident, environmental factors, lifestyle, or congenital factors. Although the prevalence of various disabilities gradually increases with advancing age, it starts to accelerate after age 70 and causes a growing need for assistance, especially after age 80 (Heikkinen 2003). However, most elderly persons report good health in the presence of chronic illness , in part because they may expect illness as a natural consequence of aging and therefore alter their definition of health (Fredriksen-Goldsen 2011). The purpose of this chapter is to discuss disabilities and chronic conditions that affect LGBT older adults. Information is presented on the definitions of disability and chronic illness; the status of aging, health, and disability; characteristics and challenges of chronic illness and disability among LGBT elders; targets for intervention; and health care and policy issues.

Learning Objective

By the end of this chapter, the reader should be able to:
1.
Understand the concept of disability .
 
2.
Understand co-occurring disabilities and chronic conditions in the elderly.
 
3.
Understand how LGBT elders are impacted by disabilities and chronic conditions.
 
4.
Understand health disparities, interventions, and healthcare policies for LGBT elders.
 

Introduction

Individuals with adult or later onset of chronic illness or acquired disability (CIAD) tend to experience more adjustment difficulties than do those with early onset. It is hypothesized that those with early onset and longer duration have had more time to adjust to a disability. Individuals with CIAD are faced with significant changes in their social and familial relationships, vocational functions, and life roles while dealing concurrently with psychosocial distress, physical pain, loss of role identity and status, prolonged medical treatment, and gradually decreasing performance of self-care and daily activities (Bishop 2012; Falvo 2014). In addition, mental health plays an important role in physical health; poor mental health can increase risk of developing chronic health conditions or aggravate existing conditions (Fredriksen-Goldsen et al. 2011).
The prevalence of disability among LGBT elderly is approximately 50 % (Fredriksen-Goldsen et al. 2011; Fredriksen-Goldsen et al. 2013). Wallace et al. (2011) found that LGB adults aged 50–70 had higher rates of physical disability compared to their heterosexual counterparts. Further inspection of these results based on the gender reveals that about 31 % of lesbians and 24 % of gay men report a disability as defined as a condition that substantially limits one or more basic instrumental activities of daily living (IADL). Heikkinen (2003) asserts that on the one hand disability in old age has identified non-modifiable risk factors such as age, gender, and genetics. On the other hand, disability in old age has modifiable risk factors such as age-related diseases, impairments, functional limitations, poor coping strategies, sedentary lifestyles and other unhealthy behaviors, as well as social and environmental obstacles, many of which stem from earlier phases of life and the prevalent socioeconomic conditions. Moreover, diseases, particularly multiple chronic illnesses, are the main causes of old-age disability. LGBT elders with disabilities must also contend with ableism; like homophobia and transphobia, it is pervasive in society.
The information in this chapter is not intended to stereotype elders as sick, depressed, cognitively or physically impaired, or fragile. Nevertheless, because most elderly adults remain healthy throughout the aging process and reside in their homes (Zians 2011), many other older adults, especially LGBT elders, develop chronic conditions and disabilities that affect their health and successful aging. Successful aging is identified with three important components: (a) avoiding disease, (b) staying engaged in life, and (c) maintaining high cognitive and physical functioning (Zians 2011). Nevertheless, the literature is consistent in the acknowledgment that with increasing age comes increased likelihood of disability.

Definition of Disability and Chronic Illness

The term “successful aging,” which emphases that not all aging is negative, may inadvertently stigmatize older adults who have a disability (Chappell and Cooke 2010). Thus, Chappell and Cooke advance the notion of Kennedy and Minkler (1998), who argue that aging consists of both able bodies and disabled bodies and the notion of Zola (1993) that for individuals, disability “is not whether but when, not so much which one, but how many and in what combination” (p. 10). Disability is defined from various aspects including medical, vocational, and perceptual, and is interpreted from conceptual, legal, and cultural perspectives. In the broadest sense, disability refers to the functional limitations of activity that result from impairment (Falvo 2014). Conceptually, disability is not a condition that is inherent in the individual, but rather the result of the interaction between the person and the environment that imposes limitations on the person. The concept of disability has historical, social, legal, and philosophical influences on its interpretation (Disability World 2012). In some contexts, disability is considered a social phenomenon; however, the ability to carry out one’s roles in life is also a medical entity (Fried et al. 2004). Culturally, a person may not consider him or herself as having a disability because he or she is still able to perform many activities of self-care and maintain a certain level of social interaction.
In the USA, legally, disability is defined in Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990 as (a) “a physical or mental impairment that substantially limits one or more of the major life activities of such individuals, (b) a record of such an impairment, or (c) being regarded as having such an impairment” (Colker 2005, p. 101). The World Health Organization (WHO) (2011) defines disability as an umbrella term, which covers impairments (i.e., a problem in body function or structure), activity limitations (i.e., a difficulty encountered in executing a task or action), and participation restrictions (i.e., a problem experienced in involvement in life situations). Although there is no universal international legal definition of disability (Degener 2006), increasingly, the global community is utilizing the International Classification of Impairments, Disabilities and Handicaps (ICIDH) definition of disability, which describes three dimensions: impairment, disability, and handicap in the context of health experience (see Table 33.1). A new version of ICIDH is currently being drafted and may be published simultaneously with the release of this book. The new ICIDH will allow for more specific recognition of the third dimension of disability, with renaming it “participation” and recognition of the critical role played by the environment or contextual factors in restricting fill participation of persons with disabilities (Disability World 2012).
Table 33.1
ICIDH dimensions of disability
Impairment—Any loss or abnormality of psychological, physiological, or anatomical structure or function. Impairment is considered to occur at the level of organ or system function
Disability—Any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being. Disability is concerned with how functional performance affects the whole person
Handicap—A disadvantage for a given individual, resulting from impairment or a disability, that limits or prevents the fulfillment of a role that is normal (depending on age, sex, and social and cultural factors) for that individual
The third dimension—Handicap focuses on the person as a social being and reflects the interaction with and adaptation to the person’s surroundings. The classification system for handicap is not hierarchical, but is constructed of a group of dimensions, with each dimension having an associated scaling factor to indicate impact on the individual’s life
Adapted from WHO (2011)
Across the life span, disability is typically defined in terms of difficulties in one or more physical activities of daily living (PADLS) (e.g., bathing, dressing, feeding, and toileting) or in one or more IADLs (e.g., walking, housekeeping, shopping, using the phone, taking medication, climbing stairs, reaching, and lifting or carrying large objects) (Heikkinen 2003; Wallace et al. 2011). Loss of the ability to care for oneself appropriately results in further loss of independence and can lead to the need for care in an institutional setting (Centers for Disease Control and Prevention [CDC] 2013). Moreover, Heikkinen contends that the general pattern of an increase in disability with advancing age is fairly consistent across industrialized countries, even though there may be significant differences in the prevalence of particular disabilities and underlying factors.
Just as development is not static or finite, neither is disability. The effects of chronic illness and disability may differ depending on individual attributes and on different stages of development, impeding the development of certain skills associated with a particular stage of life. For example, for older adults, illness or disability can present physical or cognitive limitations in addition to those commonly associated with the aging process. An individual grows old gradually and does not suddenly become old when he or she turns age 60, 65, or 70 (Chappell and Cooke 2010). Disability is a process of continuous adaptation to changes across the life span (Sheets 2010). Eventually, disability limits autonomy, introduces dependence, reduces quality of life, and increases risk of assisted living or custodial care and premature death (Fried et al. 2004; Heikkinen 2003).
One of the essential functions to an individual’s everyday life is mobility. In fact, mobility is considered central to an understanding of health and well-being among older populations. Limited or lack of mobility significantly narrows an older person’s world and ability to do things that bring enjoyment and meaning to life (Centers for Disease Control and Prevention 2013). The physical environment offers the potential to assist an individual to intrinsic disability (i.e., ability to perform an activity regardless of context) through the removal or modification of environmental barriers. Thus, for persons with disabilities the goal is to enhance an individual’s actual ability (i.e., ability to perform an activity when supported by the physical or social environment) (Chappell and Cooke 2010; Verbrugge and Jette 1994). The challenge for many older adults with disabilities and chronic illness is that aging-in-place (remaining at home) may be compromised by environmental hazards and barriers, common in the homes of older adults (Chappell and Cooke). Table 33.2 identifies modifications often needed for older adults to remain at home as they age. In addition, fear of discrimination and stigma drives many LGBT elders to avoid services that might enable them to stay in their homes and avoid premature institutionalization (Funders for Lesbian and Gay Issues 2004).
Table 33.2
Modifications necessary for elders to age-in-place
Automatic door openers or door handles instead of doorknobs
Flashing lights connect to doorbell for those hard-of-hearing
Frequently used items in a lower location/easier to reach
Handrails in showers, bathtubs, and around toilet area
Wider doorways, hallways, and circulation paths
No carpet and fewer transitions in flooring
Lower counters, tables, and cabinets
Step-free entry into shower
Enhanced ringer on phone
Handrails on walls
Large print dials
Brighter lighting
Exterior ramps
Without traditional support systems that allow them to age-in-place, many LGBT elders end up relying on nursing homes or other facilities to provide long-term care (MAP and SAGE 2010).

Status of Aging, Health, and Disability

Throughout the world, people are living longer, and their quality of life, to a large extent, is determined by their health status. Over the past century, a major shift occurred in the leading cause of death for all age groups, from infectious diseases and acute illnesses to chronic diseases and degenerative illnesses. Global estimates for disability are increasing due to population aging and the rapid spread of chronic diseases, as well as improvements in the methodologies used to measure disability (WHO 2011). Moreover, WHO (2011) suggests that disability is part of the human condition in which everyone will be temporarily or permanently impaired at some point in life. Persons who reach old age will experience increasing difficulties in functioning. Two out of every three older Americans have multiple chronic conditions and accounts for 66 % of the country’s healthcare budget (Centers for Diseases Control and Prevention 2013; National Institute on Aging [NIA], National Institutes of Health [NIH] 2011). The National Report on Healthy Aging reports on 15 indicators of older adult health, which are grouped into four areas: health status, health behaviors, preventive care and screening, and injuries. Eight of the 15 indicators are contained in Healthy People 2020. To date, the USA has met six of the Healthy People 2020 targets (i.e., leisure time physical activity, obesity, smoking, taking medications for high blood pressure, mammograms, and colorectal cancer screenings), with most states ahead of schedule on four health indicators for older adults (i.e., obesity, medications for high blood pressure, mammography, smoking), and with significant work to do on other indicators for older adults (i.e., flu vaccine, pneumonia) (Centers for Disease Control and Prevention). The Centers for Disease Control and Prevention identifies the areas where services are most needed for LGBT elders: housing, transportation, legal services, and chronic disease prevention.
Heart disease and cancer pose the greatest risks as people age, and for older adults, other chronic diseases and conditions including Alzheimer’s disease, diabetes, chronic lower respiratory, stroke, influenza, and pneumonia represent the major contributors to deaths (Centers for Disease Control and Prevention 2013; WHO 2011). Typically, older adults have multiple illnesses; the varied nature of these conditions requires intervention from multiple healthcare specialists, various treatment regimens, and prescription medications that may not be compatible. Because of these multiple conditions, older adults are at an increased risk for having conflicting medical advice, adverse drug effects, unnecessary and duplicative tests, and avoidable hospitalizations (Centers for Disease Control and Prevention).
Although disability correlates with disadvantage, not all persons with disabilities are equally disadvantaged. Women, the elderly, the poorest, and those with more severe impairments experience greater discrimination and barriers (WHO 2009, 2011). LGBT elders are represented consistently across these groups. The documentation of widespread evidence of barriers that are identified by WHO (2011) (see Table 33.3) for persons with disabilities parallels the barriers experienced by LGBT elders.
Table 33.3
Barriers for persons with disabilities
Inadequate policies and standards—policy design does not always take into account the needs of persons with disabilities, or existing policies and standards are not enforced
Negative attitudes—beliefs and prejudices constitute barriers to education, employment, health care, and social participation
Lack of provision of services—persons with disabilities are particularly vulnerable to deficiencies in services such as health care, rehabilitation, and support and assistance
Problems with service delivery—poor coordination of services, inadequate staffing, and weak staff competencies can affect the quality, accessibility, and adequacy of services for persons with disabilities
Inadequate funding—resources allocated to implementing policies and plans are often inadequate
Lack of accessibility—many built environments, transportation systems, and information are not accessible to all. Lack of access is a frequent reason for persons with disabilities being discouraged from seeking employment, inclusion, or accessing health care
Lack of consultation and involvement—many persons with disabilities are excluded from decision making in matters directly affecting their lives
Lack of data and evidence—a lack of rigorous and comparable data on persons with disabilities and their circumstances and evidence on programs that work can impede understanding and action
Adapted from WHO (2011)
The status of aging, health, and disability discussed in this section is relevant to LGBT elders. In addition, LGBT older adults have complex outcomes for chronic illness and disabilities. The following section examines the occurrence of health and disability-related conditions that are specific to LGBT elders.

Chronic Illness and Disability Among LGBT Elders

Physical disability occurs frequently in older adults and is “an outcome of diseases and physiological alterations with aging, with the impact of these underlying causes modified by social, economic, and behavioral factors as well as access to medical care” (Fried et al. 2004, p. 256). With the diversity of life span, health outcomes, and other individual variations among older persons, elders are frequently identified as vulnerable because of comorbidity (multiple chronic conditions), frailty, and disability. Fried et al. assert that these clinical entities are distinct but causally related in that both frailty and comorbidity predict disability , disability exacerbates frailty and comorbidity, and comorbid diseases may contribute, at least additively, to the development of frailty. No distinction is made between the older population and older LGBT adults for these clinical entities. Over two decades ago, Fine and Asch (1988) asserted that almost all research on adults with disabilities seemed to assume the irrelevance of sexual orientation and presume that having a disability eclipses social experience. To date the majority of research on aging and disability and chronic illness continues to ignore LGBT elders. For LGBT persons with disabilities, a disability is likened to living in the “second closet” (Benedetti 2011). Thus, only estimates of the full extent of LGBT health disparities are possible due to a consistent lack of data collection. The main areas of disparity are access to health care, HIV/AIDS, mental health, and chronic physical conditions (MAP and SAGE 2010).
Understanding chronic conditions and disability among LGBT elders is increasingly important for several reasons: (a) advances in medicine, public health, rehabilitation, and technology have increased life expectancy for persons with disabilities; (b) LGBT elders have limited access to culturally sensitive and LGBT-affirmative service; (c) older adults are remaining in the workforce longer; (d) LGBT elders are among the poorest of the poor, especially women; (e) LGBT elders have higher rates of health disparities; and (f) quality of life is compounded by the intersection of age, sexual orientation or gender identity, and disability (Harley 2015). Increasing numbers of older adults living to reach old age (including LGBT elders) have changed the demographics of disability (Sheets 2010). The case of Gloria below is an illustration of a lesbian who acquired a disability earlier in life and additional chronic illness es as she aged.
Case Study of Gloria
Gloria is a 67-year-old African American lesbian. She was diagnosed with multiple sclerosis at age 36. Gloria worked as a college professor until her disability forced her to retire at age 57. Subsequently, she was diagnosed with arthritis in her hands and knees at age 48 and recently with macular degeneration of the eye. Gloria does not go to the doctor on a regular basis. She waits until the symptoms of her illnesses become, as she describes them, intolerable.
Gloria was married and divorced at age 23. She has two grown children who live in other states. Gloria served in the army for eight years. Gloria has ongoing contact with her children.
Gloria is still able to drive, but has reduced the distance that she will drive because of muscle weakness, severe headaches, and vision problems. She is not active in the LGBT community, but she does have several lesbian and gay friends with whom she socializes. Gloria regards herself as an advocate for lesbians and women’s rights.
Questions
  • What are the functional implications related to Gloria’s disabilities?
  • What type medical specialists will Gloria have to see?
  • What are the cultural considerations in working with Gloria?
  • What do you need to know about Gloria’s family dynamics and support system?
  • What issues must be addressed with regard to the intersection of age, disability, and ethnicity?
LGBT older adults are at an elevated risk of disability and mental distress, with 31 % reporting depression and more than 53 % of transgender older adults at risk of both disability and depression. The rates of disability among LGBT elders are also distinguishable by gender, with sexual minority women’s health being significantly lower than men and heterosexual women. Older gay and bisexual men are more likely to experience poor physical health compared to heterosexual men. Bisexual men have significantly higher rates of cardiovascular disease than gay men. Transgender older adults are more likely than non-transgender older adults to have obesity, cardiovascular disease, asthma, and diabetes. Lesbians and bisexual women have similar rates of vision, hearing, and dental impairments; bisexual men have more vision impairments than gay men, and transgender older adults have more sensory and dental impairments than their non-transgender counterparts. Older lesbians are significantly more likely to engage in heavy drinking as compared to older bisexual women (Fredriksen-Goldsen 2011; Fredriksen-Goldsen et al. 2011).
In a study of disparities and resilience among LGBT older adults, Fredriksen-Goldsen et al. found that 41 % of the participants in the project had limitations in their physical activities as a result of physical, mental, or emotional problems. Of this percentage, 21 % were using adaptive equipment. An examination of the combination of LGBT older adults with limits in physical activities and the use of adaptive equipment reveals that 47 % have a disability, including 53 % of lesbians, 51 % of bisexual women, 41 % of gay men, 54 % of bisexual men, and 62 % of transgender older adults. Collectively, LGBT elders have diagnoses of high pretension (45 %), high cholesterol (43 %), arthritis (35 %), cataracts (22 %), asthma (16 %), diabetes (15 %), hepatitis (11 %), and osteoporosis (10 %). It is unknown if the rate of Alzheimer’s disease among LGBT elders is different than the general elderly population.
The American Community Survey (ACS) is a general household survey conducted by the US Census Bureau and is designed to provide communities with reliable and timely demographic, economic, and housing information. An examination of ACS (Population Association of America 2014) data, from the 2009–2011, reveals that the prevalence of disability among older adults in same-sex relationships varies by gender and relationship type, and by type of disability . Overall, 17.5 % of older men in same-sex relationships were living with a disability compared to 20.8 % of married men and 21.5 % of unmarried men in opposite-sex relationships. Men in same-sex relationships were less likely to report difficulty in cognitive, ambulatory, self-care, and sensory functions compared to married and unmarried men in opposite-sex relationships. However, men in same-sex relationships were slightly more likely to report difficulties with independent living. On the other hand, women in same-sex relationships reported higher levels of almost all disability types compared to their married and unmarried counterparts in opposite-sex relationships, including any disability and difficulty in ambulatory, self-care, sensory, and independent living functions. The prevalence of cognitive difficulty for women in same-sex relationships was less than that of women in unmarried opposite-sex relationships, but more than that of women in married opposite-sex relationships. In summary, these data provide evidence of national disparities in disability between older adults in same-sex relationships compared to older adults in opposite-sex relationships. And, this relationship is especially strong and consistent for women (Populations Association of America).
Overall, mental health of LGBT elders is good (70.8 on a scale of 0 = very poor to 100 = excellent). In rating satisfaction with their life, lesbians report (71.8), bisexual women (65.6), gay men (71.7), bisexual men (65.6), and transgender older adults (62.7). Thirty-one percent of LGBT elders report some type of depressive symptoms, with 53 % having been told by a doctor that they have depression. Transgender older adults have the highest rate of depression (48 %), and lesbians (27 %) and gay men (29 %) have the lowest, and 24 % of LGBT older adults have been told they have anxiety (Fredriksen-Goldsen et al. 2011). Two of the most alarming mental health issues for LGBT elder are loneliness and social isolation (see Chap. 30). Both of these issues can lead to negative health consequences or be the result of chronic illness and disability . Older bisexual women and men exhibit higher rates of loneness than lesbians and gay men. The rates of neglect experienced by LGBT elders are similar to the general elderly population, and their rates of mistreatment tend to be higher (see Chaps. 16, 17, and 21 in this text). Across the categories of physical and mental health, transgender older adults fair worst than other LGB elders. The prevalence of physical and mental health problems is elevated among LGBT elders even taking into account differences in age distribution, income, and education; however, those LGBT elders with lower incomes and lower education are at more heightened risk (Fredriksen-Goldsen et al.).
Much of the sparse research that has been done on LGBT elders with disabilities has looked at either physical or mental disabilities. There is a clear lack of focus on LGBT older adults with developmental disabilities. This is especially disconcerting for two reasons. First, many persons with developmental disabilities have the same life expectancy as the general population. Second, while most people begin to experience the effects of aging in their 40s, some persons with a developmental disability may require a greater level of support at a younger age than the general population. The later reason requires more attention be given to factors associated with aging such as changes in social roles, activity levels, behavior patterns, and response to occurrences in the environment and health conditions (Connect Ability 2010). Some characteristics of aging may mask symptoms of a developmental disability and vice versa. For example, an older adult with Alzheimer’s may exhibit a lack of insight or an inability to articulate what he or she is experiencing, both of which are characteristic of cognitive impairment associated with a developmental disability and Alzheimer’s disease.
LGBT elders with disabilities and chronic conditions may find themselves facing issues of coming out or coming out again as needs for social services increase (Sue and Sue 2013). It is important for them to understand and be prepared for the potential negative responses they may receive as they complete the application process for services. For example, the answers that they provide on an application may inadvertently expose them to discrimination. Thus, LGBT elders’ application for services because of a disability may be overshadowed by a service provider’s preoccupation and bias with their sexual orientation or gender identity. Discussion Box 33.1 provides some examples of implications for practice.
Discussion Box 33.1
Implications for practice with LGBT older adults
Avoid use of heterosexist language.
Be aware if the person has competency issues.
Do not use labeling language (e.g., disabled person).
Be aware of a change in name of a transgender person.
Ask the person by what name he or she want to be addressed.
To the extent possible, give the person as much autonomy as possible.
Be aware that LGBT clients have specific concerns about confidentiality.
Recognize the historical affects of stigma related to sexual identity and age.
Be knowledgeable of the person’s support system or the need to establish one.
Understand the functional limitations of disabilities/chronic conditions for the individual.
Do not assume that the presenting problem is the result of sexual orientation, or gender identity.
Assist the person in identifying concerns that have to be addressed in the short-term and long-term (e.g., housing, end-of-life issues).
Recognize that mental health issues may be the result of stress related to homophobia/transphobia, internalized homophobia, the coming out process, or lack of support systems.
Questions
1.
What are the ways that you can prepare to address these issues?
 
2.
Do you know the resources that can assist you in supporting your efforts to work with LGBT elders with disabilities?
 
3.
How can the intersection of disability, age, and sexual identity impact service delivery?
 

Service Needs and Intervention

Disability is complex, and the interventions to overcome the challenges associated with disability are multiple and systemic, varying with the context (WHO 2011). An area of critical concern for elders is affordable housing as they age-in-place. LGBT elders identify housing as the number one priority for action in a needs assessment conducted by Senior Action in a Gay Environment (SAGE) (Funders for Lesbian and Gay Issue 2004). Moreover, housing discrimination is of primary concern, including “trepidation” about mainstream senior housing options (Knauer 2009; National Gay and Lesbian Task Force 2006). Implicit in affordability is accessible housing that will allow elders to maintain independence, quality of life, and safety in terms of both the condition of the dwelling and residential location. The ability to obtain adequate and safe housing affects all aspects of life (e.g., employment, proximity to friends and family, access to services), and the relationship between housing and other aspects of everyday life is particularly important for older persons who may be more restricted because of their mobility, income, and support systems (Equal Rights Center 2014).
The Equal Rights Center (2014) conducted an investigation to determine the extent of adverse, differential treatment experienced by a senior seeking housing for oneself and a same-sex spouse. The study used matched pair testing (i.e., one LGB senior tester and one heterosexual senior tester) in 200 tests across 10 states. In 96 (48 %) of the 200 tests conducted, the LGB tester experienced at least one type of adverse, differential treatment as compared to the heterosexual tester with an opposite-sex spouse. The differential treatment was not as blatant as refusal or rejection by a housing provider. Instead, barriers to equal housing opportunity ranged from differences in availability, pricing, fees and costs, incentives to rent, amenities available, and application requirements. Sometimes, housing providers refused to recognize the same-sex couples, encouraging them to apply separately or restricting them from living together. More blatant cases of differential treatment include housing providers making degrading remarks, being less than inviting, or being hostile. Although this study did not include transgender persons, discrimination is also a widespread problem against them, regardless of their sexual orientation, which typically results in being denied a home or apartment, being evicted because of being transgender or gender non-conforming, and homelessness (Grant et al. 2011). Other studies found that gay or lesbian home seekers were subject to unfavorable treatment 27 % of the time (Michigan Fair Housing Centers 2007), and when emailing the same housing provider to inquire about housing availability, opposite-sex couples were more likely to receive a response than same-sex couples (Davis et al. 2013). See Chap. 21 for additional discussion on housing concerns of LGBT elders.
Many older adults with disabilities rely on assistive animals (e.g., service animals, support animals, assistance animals, therapy animals) to perform tasks or provide support that alleviates at least one of the functional limitations or effects of a disability. Persons with an assistive animal who are refused rental housing or required to pay an additional fee or deposit essentially deny persons with disabilities access to housing. Despite legal protection, persons who use assistive animals are frequently denied required accommodations (Equal Rights Center 2012). The Equal Rights Center found that housing providers or leasing agents either do not know the reasonable accommodation policies in place for their properties, or do not obtain and provide this information for a potential tenant with a disability on request.
Healthcare and Other Services. Often, providing healthcare services, counseling, and other social services to LGBT elders is challenging because of stigma and discrimination from service providers. According to the American Medical Association (2009), the failure of physicians to recognize patient’s sexual orientation and gender identity and patients non-disclosure can result in serious medical problems, inferior health care, or denial of appropriate services. The distribution of discrimination by service providers against LGBT elders is even more so against transgender elders. In a survey of 320 area agencies and state units on aging, Knochel et al. (2011) found that more than one in four reported that transgender older adults would either not be welcomed by local service providers or the agency was unsure of how welcome they would be. The Institute of Medicine (2011) verifies that major research gaps in transgender aging, elder abuse, substance abuse, risk and best practices for long-term hormone therapy, sexual health, and cancers as areas in which more transgender researches are needed. Often, both fear and reality of discrimination lead to underutilization of services (Tobin 2011). Table 33.4 contains examples of discrimination and victimization experienced by LGBT elders and that create obstacles to accessing and utilizing necessary health and social support services. In addition, racism affects the health and healthcare experiences of ethnic minority LGBT elders differently than their non-minority counterparts (see Chaps. 58, and 10 in this text). The combination of ageism and homophobia or transphobia serves to demean, devalue, and denigrate older LGBT adults and pathologize their lives. Furthermore, the discriminatory behavior of practitioners may result in inaccurately assessing LGBT elders presenting problems, refraining from providing appropriate services and referrals, increasing LGBT elders dependency on caregivers and service providers, and offering inappropriate treatments (Crisp et al. 2008).
Table 33.4
Obstacles to LGBT elders accessing health and social support services
Ageism
Hostility
Harassment
Homophobia
Tansphobia
Lack of affordability
Threats of being “outed”
Denial or provision inferior services
Threats of physical violence
Violation of confidential information
Panic over dealing with heterosexual assumptions
Verbal insults and inappropriate nonverbal responses from service providers and staff
Refusal of healthcare systems to recognize extended families within the GBT Community
Another area of critical concern for LGBT elders with disabilities is the need of support systems, both informal (e.g., family and friends) and formal (e.g., institutional care). Overreliance on informal support system often results in emotional stress, physical fatigue, and financial burden for those individuals. Reliance on institutional supports can result in increased dependency for LGBT elders. An overlapping and critical concern for LGBT elders with disabilities and chronic conditions is decision making about end-of-life issues (see Chap. 22). In the absence of a living will or healthcare directive, older LGBT adults may rely on members in their informal network to make decisions. These members may be denied access to an elder at the end of the life due to provisions in the Health Insurance Portability and Accountability Act (1996), one intention of which was to provide greater safeguards concerning medical records.
Most importantly, LGBT elders with disabilities and chronic conditions need to achieve recognition as a distinct minority group with needs unique from their heterosexual counterparts. The assumption of heterosexuality by service providers serves to not only relegate LGBT elders to secondary status because of age, disability , sexual orientation, and gender identity, but also to dismiss the reality that they exist. This belief informs the delivery of health care, social services, and social programs (Kimmel 2014). In fact Kimmel et al. (2015) use very explicit adjectives to describe the perceptual impact on LGBT elders by implicit heterosexual assumptions in various service arenas. These descriptions include how assumptions “limit” the language used in intake forms and communication, “prevent” discussion, “interfere” with, “preclude,” “marginalize,” and “alienate” LGBT seniors. In an effort to counteract these negative and aversive assumptions, the guidelines developed by The Joint Commission (2011) for hospitals and medical settings can be implemented by various human and social service entities (see Table 33.5).
Table 33.5
Guidelines for provision of care
Create a welcoming environment that includes LGBT clients
Prominently post the program’s non-discrimination policy
Ensure that waiting rooms and other common areas reflect and include LGBT clients and families (e.g., rainbow flag, LGBT-friendly periodicals)
Create or designate unisex or single-stall restrooms
Ensure that visitation policies are implemented in a fair, non-discriminatory manner
Foster an environment that supports and nurtures all clients and families
Avoid assumptions about a person’s sexual orientation or gender identity based on the appearance
Be aware of misconceptions, biases, stereotypes, and other communication barriers
Promote disclosure of sexual orientation and gender identity while remaining aware that disclosure or “coming out” is an individual process
Make sure that all forms contain inclusive, gender-neutral language that allows for self-identification
Use neutral and inclusive language in interviews and when talking to all clients. Ask the client what pronoun is preferred
Listen to and reflect the client’s choice of language when describing his or her own sexual orientation and how the client refers to his or her relationship or partner
Provide information and guidance for the specific health concerns of LGBT persons
Become familiar with online and local resources available for LGBT persons
Seek information and stay up-to-date on LGBT health topics
Be prepared with appropriate information and referrals
Adapted from The Joint Commission (2011)
The intent of identifying health disparities and other service needs of LGBT elders is to illuminate and define them in a way that advances the formulation of public policy and legislation (Gamble and Stone 2006). Too often, policies have discriminated against LGBT persons, failed to recognize them as deserving of equal protection under the law, and erected barriers to seeking and securing needed services for health and mental health. The overall objective of policy should be to decrease, eventually eliminate discriminatory practices, and level the playing field. The following section discusses policy implications for LGBT elders with disabilities.

Policy Issues

The disparities in disability between LGBT elders and their heterosexual counterparts in tandem with their status as an already vulnerable population should raise concern for practitioners and policymakers alike (Population Association of America 2014). As the overall population ages, the numbers of the most vulnerable (e.g., persons with disability, the elderly, women living alone, minorities) will grow as well. Clearly, an older population with health, disability, and mobility issues will drive the demand for home modifications, housing options that facilitate delivery of services and help prevent premature entry into assisted living facilities and nursing homes, flexible housing zoning polices, and aggressive enforcement of the requirements of the Fair Housing Act and the ADA to help LGBT elders age-in-place (Lipman et al. 2012). Of course, a critical concern is how to pay for the services to help LGBT elders with disabilities and chronic conditions age-in-place.
Developing policy that is responsive to the needs of LGBT elders with disabilities and chronic conditions does not always require the reinvention of services. Rather, modifications can be made in existing policy used to respond to barriers imposed on persons with disabilities and disadvantaged groups (e.g., WHO 2011). For example, emphasis should be placed on early intervention with the provision of services as close as possible to individuals’ residence or community. For established services, the focus should be on improving efficiency and effectiveness by including LGBT-sensitive programming and improving quality and affordability. In less-resourced settings, the focus should be on accelerating the supply of LGBT-appropriate services, complemented by referrals to secondary services. Integrating LGBT services specific to elders with disabilities into primary and secondary healthcare settings can improve availability if these settings have practitioners who are sensitive to and competent in working with this population. In addition, referral systems between different modes of service delivery (e.g., inpatient, outpatient, home-based care), levels of health service provision (e.g., primary, secondary, and tertiary care facilities), and types of human and social service assistance (e.g., food stamps, housing, and protection and advocacy) can improve access. For persons with disabilities, community-based services are a critical part of the continuum of care (WHO 2011).
An area in which policy issues and social concerns are lagging behind is in addressing older adults with HIV. Over time, AIDS has shifted from being dubbed the “gay” disease to equally affecting heterosexuals and disproportionately affecting women and people of color. People are living an almost typical life span if diagnosed and treated early. A growing number of older adults are getting HIV because they do not believe that they are at risk. In fact, older adults are more vulnerable to HIV infection than younger people due to biological changes associated with aging (e.g., thinner mucosal membranes in the anus and vagina) (Tietz and Schaefer 2011). In terms of policy, Tietz and Schaefer assert that the problem is that virtually no comprehensive, federal HIV prevention initiatives have been funded to target older adults in light of HIV being one of many treatable chronic conditions affecting this population. Therefore, several recommendations are presented for the Centers for Disease Control regarding HIV and older adults. First, the CDC needs to extend its age cap (ages 16–64) for recommended annual HIV testing to include adults over age 64, especially since many are sexually active. Second, develop HIV prevention models aimed specifically at older adults and should include a social messaging component to end the HIV and anti-gay stigma often seen in nursing homes, senior centers, and other senior programs. As part of its reauthorization, the Older Americans Act (OAA) can make legislation more responsive to older adults living with and at risk for HIV. Defining older adults with HIV as a population of greatest social need within the OAA will allow the Administration on Aging to dedicate critical resources for community planning and social services, research and development projects, and personnel training in the field of aging (Tietz and Schaefer).
Although there are existing aging services, public policy, and research initiatives intended to support older adults in times of need, most are inaccessible to LGBT elders and their loved ones. In addition, available services and programs are geared toward the general population and do not take into consideration the unique circumstances facing LGBT elders with disabilities and chronic conditions (Fredriksen-Goldsen et al. 2013). Moreover, policy and legislation for persons with disabilities do not include specific reference to LGBT persons with disabilities.

Summary

Almost half of the LGBT elders over age 50 have a disability. LGBT elders are at an elevated risk of disability, chronic conditions, and mental distress. Some of the disabilities and chronic health conditions of LGBT elders are a result of the aging process and others are related to stressor experienced as a result of a lifetime of stigma and discrimination. Similar to other groups, LGBT elders possess both strengths and resilience and challenges and barriers that impact their health outcomes. Not all aging is negative. They must address the pervasiveness of ableism, homophobia, and transphobia. Certain health behaviors are more prevalent among older LGBT adults as compared to their heterosexual counterparts.
As a group, LGBT elders are one of the least understood in terms of their chronic health conditions and aging-related needs. The types of chronic conditions among LGBT elders vary according to gender. The severity of disability also affects the person’s level of independence, mobility, their ability to age-in-place, and social inclusion.
Overwhelmingly, research on adults with disabilities has not focused on LGBT elders. Understanding LGBT elders within the context of disability has implications for the development of services and programs and policy. LGBT elders with disabilities have different attributes and characteristics that interact with age than their differently able peers, and deserve no less than having their differing and unique needs understood and served.
Research Box 33.1
Objective: To comprehensively examine disability among LGB adults through the use of population-based data.
Method: Estimated prevalence of disability and its covariates and compared by sexual orientation by using data from the Washington State Behavioral Risk Factor Surveillance System collected in 2003, 2005, 2007, and 2009. Multivariate logistic regression was used to analyze the relationship between disability and sexual orientation after controlling for covariates of disability.
Results: The prevalence of disability is higher among LGB adults compared with their heterosexual counterparts; LGB adults with disabilities are significantly younger than heterosexual adults with disabilities. Higher disability prevalence among lesbians and among bisexual women and men remained significant after we controlled for covariates of disability.
Conclusion: Higher rates of disability among LGB adults are of major concern. Efforts are needed to prevent, delay, and reduce disabilities as well as to improve the quality of life for lesbian, gay, and bisexual adults with disabilities. Future prevention and intervention efforts need to address the unique concerns of these groups.
Questions
1.
What type of methodology might have been more appropriate for this study?
 
2.
What is the importance of this study to public healthcare cost associated with disability in LGB adults as they age?
 
3.
What implication does this study have for planning for intrinsic ability and actual ability of LGB adults as they age and want to age-in-place?
 
4.
What are the limitations to this study?
 

Learning Exercises

Self-Check Questions
1.
Do individuals with later onset of chronic illness or acquired disability (CIAD) or with early onset disability experience more adjustment difficulties?
 
2.
At what age does disabilities start to accelerate?
 
3.
What identifiable non-modifiable risk factors are associated with disability in old age?
 
4.
What are the main causes of old-age disability?
 
5.
What are the three important components of successful aging?
 
Field-Based Experiential Assignments
1.
Interview an older lesbian, gay man, bisexual person, or transgender person with a disability. Based on the interview, help the person set up a resource guide.
 
2.
Participate in advocacy services or activities for persons with disabilities through (a) attending public hearings, (b) doing background research for a protection and advocacy agency, or (c) attending a public demonstration for persons with disabilities.
 
3.
Examine your own views of minority sexuality and aging. Next, examine how your views impact your ability and willingness to work with LGBT elders with disabilities. What are the ethical implications of your beliefs? Finally, consider that you or a family member are an LGBT elder with a disability or chronic condition and examine how you will feel.
 

Multiple-Choice Questions

1.
A person with a disability who does not consider him or her self as having a disability because he or she can perform many activities of self-care and is able to maintain a certain level of social interaction, is exhibiting which of the following?
(a)
A condition inherent in the individual
 
(b)
Cultural perception of disability
 
(c)
A philosophical perception of disability
 
(d)
Denial
 
 
2.
The definition of disability that states a disability is a physical or mental impairment that limits one or more of the major life activities, a record of impairment, or a person being regarded as having impairment, is the definition of which of the follow?
(a)
World Health Organization
 
(b)
Classification of Impairments, Disabilities, and Handicaps
 
(c)
Americans with Disabilities Act
 
(d)
Rehabilitation Act of 1973
 
 
3.
Activities such as walking, dressing, feeding, and toileting are known as which of the following?
(a)
Physical activities of daily living
 
(b)
Instructional activities of daily living
 
(c)
Instrumental activities of daily living
 
(d)
Disability continuum of daily living
 
 
4.
Which of the following groups among LGBT elders have the highest overall rate of disability?
(a)
Lesbians
 
(b)
Gay men
 
(c)
Bisexual men
 
(d)
Bisexual women
 
 
5.
What are the two most alarming mental health issues for LGBT elders?
(a)
Bipolar disorder and loneliness
 
(b)
Loneliness and social isolation
 
(c)
Social isolation and depression
 
(d)
Depression and anxiety
 
 
6.
At what age does the Centers for Disease Control cap it recommendation for annual HIV testing?
(a)
55
 
(b)
64
 
(c)
67
 
(d)
70
 
 
7.
What is the rate of Alzheimer’s disease among LGBT elders as compared to the general elderly population?
(a)
Lower
 
(b)
Higher
 
(c)
Unknown
 
(d)
About the same
 
 
8.
Which of the following do LGBT elders identify as the number one priority for action?
(a)
Social support systems
 
(b)
Food stamps
 
(c)
Transportation
 
(d)
Housing
 
 
9.
Which of the following presents more adjustment difficulties to disability or chronic illness?
(a)
Early onset
 
(b)
Midlife onset
 
(c)
Later onset
 
(d)
None of the above
 
 
10.
Which of the following refers to older adults remaining in their home?
(a)
Aging-in-place
 
(b)
Assistive living
 
(c)
Structural support
 
(d)
Group home
 
 
Key
  • 1-b
  • 2-d
  • 3-c
  • 4-a
  • 5-b
  • 6-b
  • 7-c
  • 8-d
  • 9-c
  • 10-a

Resources and Websites

National Coalition for LGBT Health (Being LGBT with a Disability): www.​lgbthealth.​webolutionary.​com/​content/​being-lgbt-disability
National Council on Independent Living: www.​ncil.​org
National Organization on Disability: www.​nod.​org
Services and Advocacy for Gay, Lesbian, Bisexual and Transgender Elders (Disability: www.​sageusa.​org/​issues/​disability.​cfm
US General Services Administration: www.​gas.​gov
US Government Disability Resources: www.​Disability.​gov
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