CHAPTER 26 Clients with Disabilities and Chronic Illnesses
mental impairment that substantially limits one or more major
life activities, a person who has a history or record of such an
impairment, or a person who is perceived by others as having
such an impairment” (USDOJ, 2005, p. 2). A list-ing of the
specific impairments covered under the law is notably absent,
leaving open a broad range of interpretations and legal
challenges with respect to who is actually covered.
Although there is ongoing debate as to who is actually
protected by the ADA, an equal amount of confusion exists as
to who is actually required to comply with the provisions of
the act and what specific actions are necessary. The following
is a short summary of the ADA. All employers, including reli-
gious organizations with 15 or more employees, are subject to
the act, as are all activities of state and local governments
irrespective of size. Before 1994, the act applied only to
employers with 25 or more employees. Public transportation,
businesses that provide public accommodation, and telecom-
munications entities are all required to provide access for indi-
viduals with disabilities. It is important to note that the ADA
does not override federal and state health and safety laws.
However, successful legal challenges to those statutes have
been made when they were clearly outdated or when it could
be argued that the public safety was not actually at risk in a
specific situation. Considerable gray areas exist within the
ADA, leaving open the prospect of challenges by those who
are subject to the law and those who are protected by it.
Individuals who believe that their legal rights under
the ADA have been violated may seek remedy by filing a
law-suit or submitting a complaint to one of four federal
offices, depending on the specific type of alleged violation:
(1) the U.S. Department of Justice–Civil Rights Division,
(2) any U.S. Equal Employment Opportunity Commission
field office, (3) the Office of Civil Rights-Federal Transit
Admin-istration, or (4) the Federal Communications
Commission. The process for filing a complaint is not a
simple task, and many seek the assistance of attorneys,
legal aid societies, or various private organizations, some of
which are discussed later in this chapter (see Display 26.2).
DISPLAY 26.2 OFFICE OF CIVIL RIGHTS:
COMPLIANCE WITH ADA
The responsibility of the U.S. Department of Justice,
Office of Civil Rights (OCR), is to investigate complaints
of alleged violations of the Americans with Disabilities
Act (ADA). An example of one of those complaints
involved a 22-year-old Connecticut woman with cerebral
palsy. She had been placed in a nursing home because of
changes in her living situation and health care status and
wanted to move back into the community. The OCR
intervened to ensure that the woman secured appropriate
housing and that counseling and intensive case manage-
ment services were in place when she moved back into
the community. Without the protection afforded under the
ADA, the outcome could have been much different.
Source: USDHHS (2006, September). Delivering on the promise:
OCR’s compliance activities promote community integration.
Retrieved May 19, 2008 from Office for Civil Rights via:
http://www.hhs.gov/ocr/ complianceactiv.html.
❂ 737
In a report on the enforcement history of the ADA between
its inception and 1999, the National Council on Dis-ability (NCD)
noted that many of the federal agencies charged with protecting
the civil rights of disabled persons suffered from insufficient
funding and lack of a coherent and unifying national strategy
(NCD, 2000). The NCD recommendations included clarification
of specific elements that provide a basis for evaluating agency
performance and thereby serve to improve the full expression of
the law as it was intended. These 11 elements or criteria are (1)
proactive and reactive strategies,
(2) communication with consumers and complainants, (3) pol-
icy and subregulatory guidance, (4) enforcement actions,
(5) strategic litigation, (6) timely resolution of complaints,
(7) competent and credible investigative processes, (8) techni-
cal assistance for protected persons and covered entities,
(9) adequate agency resources, (10) interagency collaboration
and coordination, and (11) outreach and consultation with the
community. In a follow-up report in 2005, the NCD’s ADA
Impact Study, progress was noted in the following areas:
◆ Telephone relay services are being used at high
levels, and changes in technology are making
usage higher.
◆ Public transit systems in the United States have
made dramatic progress in becoming more accessi-
ble, especially to wheelchair users.
◆ The percentage of Americans with disabilities vot-
ing in 2004 increased dramatically.
◆ The education gap between people with disabilities
and people without disabilities is shrinking, and
people with disabilities are attending
postsecondary institutions in record numbers.
◆ People with disabilities are experiencing less
discrimination in employment (NCD, 2005, p. 3).
It is important to those with disabilities and the profes-
sionals who serve them that a structure be in place to
provide protection under the law, but this does not prevent
discrimination, nor does the existence of such a structure
suggest that immediate remedies will be available. Laws
aside, the most difficult aspect of change comes when
attempts are made to alter the perceptions and misunder-
standings of others about people with disabilities. The per-
spective of one community member offers one such exam-
ple (see Perspectives: Voices from the Community).
ORGANIZATIONS SERVING THE NEEDS OF
THE DISABLED AND CHRONICALLY ILL
Although the impact of civil rights legislation cannot be
underestimated, it did not come about without demands for
change from the chorus of voices from all those who deal on a
daily basis with the issue of disability (the individuals
themselves, their families, coworkers, employers, and advo-
cates). Without the hard work of those individuals and groups,
it is unlikely that the efforts envisioned and accom-plished by
legislation would have occurred. Much of the credit for the
legislative focus belongs to advocacy groups. The following
section provides an overview of some of the groups that
advocate for the disabled and chronically ill and their families.
In serving those specific populations, they offer others an
opportunity to learn more about the lives and struggles of
disabled persons. Each of the organizations
738 ❂ UNIT 7 Promoting and Protecting the Health of Vulnerable Populations
PERSPECTIVES
VOICES FROM THE COMMUNITY
I was always such an active and healthy person, so when I
was diagnosed with multiple sclerosis it hit me like a ton
of bricks. Here I was with two small children and I was
only 30 years old; it just wasn’t fair. Some days are good
and some days are just awful. I finally broke down and
applied for one of those disabled parking stickers. The
doctor had to approve it, and he said it was a good thing
to help me save my energy for the important things, like
taking care of my family. I hated to use it, but I was just
getting so tired. What is so awful are the looks on
people’s faces when I park in the special areas near the
door. I know I don’t look like I’m sick. I just hate those
looks—I can hear them saying under their breath, “She
can’t be sick . . . I’ll bet that sticker is for a family
member and she’s just abusing it—how lazy!” If I wasn’t
so tired I’d park in the regular parking places.
Pat N., Tampa, Florida
listed offers a wide range of information, some of which can
be accessed via the Internet. For community health nurses,
these organizations provide a starting point for exploring spe-
cific topics pertinent to practice. They also can be a source of
valuable information for clients and families to access on their
own. Families who cannot afford Internet service or computers
can use them at public libraries, most of which now offer this
service. Many Internet sites are not reliable or accurate, so it is
important for the nurse to prescreen any spe-cific sites that are
recommended to clients and their families.
Government
The NCD is an independent federal agency tasked with mak-
ing recommendations to the President and to Congress about
issues that face Americans with disabilities. The NCD has 15
Presidential appointees (all confirmed by the U.S. Senate)
whose charge is to promote “policies, programs, practices, and
procedures that guarantee equal opportunity for all indi-
viduals with disabilities, regardless of the nature or severity of
the disability, and to empower individuals with disabilities to
achieve economic self-sufficiency, independent living, and
inclusion and integration into all aspects of society” (NCD,
2008b). In its 1986 report, Toward Independence, the NCD
proposed that Congress should enact a civil rights law for
people with disabilities; the result was the 1990 ADA.
Private
Many private organizations—local, national, and interna-tional
—deal with a variety of disabilities and chronic dis-eases.
Many of the better-known organizations such as the American
Heart Association and the American Cancer Asso-ciation are
discussed in other chapters of this book and therefore are not
covered here. Instead, examples of groups that deal most
directly with disability and chronic illness are described. The
reader is encouraged to search the Internet or
print resources for additional entities that deal with specific
disabilities or chronic illnesses.
The National Association of the Deaf (NAD), head-
quartered in Washington, D.C., is a private, nonprofit
organ-ization that was established in 1880. As the oldest
U.S. organization serving this population, it has the stated
mis-sion to “preserve, protect and promote the civil, human
and linguistic rights of all deaf Americans” (National
Associa-tion of the Deaf [NAD], 2008b, p. 1). Specific
programs and activities that NAD is involved with include
advocacy, cap-tioned media, certification of American
Sign Language (ASL) professionals and interpreters, legal
assistance, and policy development and research (NAD,
2008a). ASL uses “handshapes” to communicate ideas and
concepts; it is used primarily in America and Canada by the
deaf community (Grayson, 2003). Display 26.3 offers a
brief summary of sign languages.
The National Organization on Disability (NOD), head-
quartered in Washington, D.C., has as its mission statement “to
expand the participation and contribution of America’s 54
million men, women, and children with disabilities in all
aspects of life” (National Organization on Disability [NOD],
2008, p. 1). An important contribution of NOD is the 2004
NOD/Harris Survey of Americans with Disabilities, which
sought to quantify the gaps between people with and with-out
disabilities in terms of employment, income, education, health
care, access to transportation, entertainment or going out,
socializing, attending religious services, political par-
ticipation/voter registration, life satisfaction, and trends (NOD,
2004). This was the fifth national survey sponsored by NOD
since it was first initiated in 1986. Although improvements in
all indicators have been demonstrated over this 18-year period,
progress is described as both slow and modest in the final
report. People with disabilities are more likely than
nondisabled persons to have low incomes, are
DISPLAY 26.3 SIGN LANGUAGES
IN BRIEF
• Sign languages are not universal
• Sign language is the use of “handshapes” and
gestures to communicate ideas or concepts
• American Sign Language is a unique language with
its own rules of grammar and syntax
• American Sign Language is primarily used in
America and Canada and is the natural language
of the deaf community
• International Sign Language (Gestuno) is composed
of vocabulary signs from various sign languages for
use at international events or meetings to aid com-
munication
• Systems of Manually Coded English (i.e., Signed
English, Signing Exact English) are not natural lan-
guages but systems designed to represent the trans-
lation of spoken language word for word
From Grayson G. (2003). Talking with your hands, listening with
your eyes. A complete photographic guide to American Sign Lan-
guage. Garden City Park, NY: Square One Publishers.
 CHAPTER 26 Clients with Disabilities and Chronic Illnesses
twice as likely to drop out of high school, are more likely to go
without needed health care, and they report considerably lower
satisfaction with life than persons without disabilities. The
NOD Web site connects visitors to a rich variety of sources on
community involvement, economic/employment topics, and
access issues (http://www.nod.org).
The American Council of the Blind (ACB) was founded
in 1961 and states as its purpose, “to improve the well-being
of all blind and visually impaired people” (American Coun-cil
of the Blind [ACB], 2008, p. 1). Services advertised by the
organization include information and referral, scholar-ship
assistance, public education, and industry consultation, as well
as governmental monitoring, consultation, and advo-cacy.
Some of the major issues currently being pursued by the
organization include improved education and rehabilita-tion
for the blind and increased production and use of read-ing
materials for the blind and visually impaired.
Guide Dogs for the Blind is a nonprofit charitable
organ-ization established to train and make available guide
dogs for the visually impaired (Guide Dogs for the Blind,
2008). The dogs and services are free, and the organization
relies on donations. It currently has two training sites, one
in California and one in Oregon, with puppy raisers located
throughout the Western states. The organization can be
reached through its Web site at http://www.guidedogs.com.
Another organization dealing with issues affecting the blind
and visually impaired is the National Federation of the Blind
(NFB). Founded in 1940, it seeks to help “blind persons achieve
self-confidence and self-respect and to act as a vehicle for
collective self-expression by the blind” (National Federa-tion of
the Blind [NFB], 2008, p. 1). Citing the need for assis-tance to the
more than 1.1 million people in the United States who are blind,
the organization fulfills its mission by providing public education,
information and referral, and support for increased availability of
materials in Braille (Display 26.4).
The oldest organization devoted to eliminating barriers
for the blind and visually impaired is the American Foundation
for the Blind (AFB), which was founded in 1921. The AFB
advocates for the visually impaired through increased funding
at the federal and state levels in areas such as rehabilitation
research for older, visually impaired persons; improved liter-
acy for the visually impaired, including use of Braille and
DISPLAY 26.4 WHAT IS BRAILLE?
Braille takes its name from Louis Braille, an 18-year-
old blind Frenchman who created a system of raised
dots for reading and writing by modifying a system
used on board sailing ships for night reading. Persons
experienced in Braille can read at speeds of 200 to 400
words per minute, comparable to print readers. Braille
consists of arrangements of dots to form symbols. The
text can be written either by hand with a slate and sty-
lus, with a Braille writing machine, or with the use of
specialized computer software and a Braille embossing
device attached to the printer.
Source: National Federation of the Blind. (2003). What is Braille and
what does it mean to the blind? Retrieved May 19, 2008, from
http://www. nfb.org/images/nfb/Publications/fr/fr15/Issue1/f150113.html.
❂ 739
assistive technology; improved employment opportunities; and
increased accessibility of technology. In addition, AFB houses
the Helen Keller Archives, which contain her correspondence,
photographs, and various personal items and documents
(American Foundation for the Blind [AFB], 2008).
The Obesity Society has as its mission to promote
“research, education and advocacy to better understand,
prevent, and treat obesity and improve the lives of those
affected” (Obesity Society, 2008). The organization addresses
such issues as the need for attention to the impact of obesity on
death and disability and for increased research, improved
insurance coverage, and elimination of discrimi-nation and
mistreatment of people with obesity. The organi-zation’s Web
site (http://www.obesity.org) offers informa-tional literature
covering topics that range from the global problem of obesity
to treatment of obesity-related disability.
With growing awareness that, in many cases, human
immunodeficiency virus (HIV)/acquired immune deficiency
syndrome (AIDS) is a chronic condition, the long-term needs
of those impacted by this disease are gaining atten-tion.
Hundreds of websites and organizations are available to
provide information, assistance, and support. One website, The
Body: The Complete HIV/AIDS Resource (2008) offers state-
by-state links to a variety of resources. The site also includes
resources in Canada and specific sites for American Indians
and Alaskan Natives. The website can be accessed at
http://www.thebody.com/index/hotlines/other.html.
Begun in the aftermath of World War I, the Disabled
American Veterans organization has provided free services to
military veterans seeking to obtain benefits for service-related
injuries (Disabled American Veterans, 2008). The organiza-
tion is not a government agency and receives no federal funds,
instead providing services through membership dues and pub-
lic contributions. The mission of the organization is to help
disabled veterans build better lives for themselves and their
families. With the growing number of military injuries result-
ing from the Iraq and Afghanistan conflicts, the organization
finds its service delivery even more stretched. The volunteers
provide transportation to Veterans Administration (VA) med-
ical facilities and provide ongoing service at VA hospitals,
clinics, and nursing homes. The organization’s website can be
accessed at http://www.dav.org/.
HEALTH PROMOTION AND
PREVENTION NEEDS OF THE DISABLED
AND CHRONICALLY ILL
Misconceptions Impede Improvement
Earlier, the influence of Healthy People 2010 as it relates to
people with disabilities was discussed. One of the most influ-
ential aspects of the document is its emphasis on a change in
thinking within the health care community about the health
promotion needs of people with disabilities. This shift is
needed because the lack of health promotion and disease pre-
vention activities for this population leads to an increase in the
number and extent of secondary conditions, defined as
“medical, social, emotional, mental, family, or community
problems that a person with a disabling condition likely
experiences” (USDHHS, 2000, p. 6-25). Approaching the
health needs of disabled persons from the traditional stand-
point of asking what medical, rehabilitative, or long-term care
is needed has failed to reduce illness or improve the