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
|
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
|
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. 5–8, 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
|
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
Center for Disability and Aging:
www.acl.gov/Programs/CDAP/OIP/ADRC/index.aspx
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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