using.
some point in our lives, most of us will be diagnosed health care needs of individuals, families, and aggregates are
with a chronic illness or develop some type of disability.
We may be lucky enough to get early diagnosis and treat-
ment of our health conditions so that they can be easily
tated, unable to manage our daily lives, and needing assistance
from others. We can hope our ability to resume more nor-
mal activities will return swiftly. An estimated 54 million
Americans (almost 20% of the population) live with some
ongoing level of disability (U.S. Department of Health and
Human Services [USDHHS], 2005b). In 2006 alone, over
34 million persons reported limitations in their usual activ-
ities as the result of chronic conditions (USDHHS, 2008).
The human costs associated with disabilities aside, the cost
of direct medical care and indirect annual costs related to
disability have reached almost $300 million in the United
States alone.
In the Final Review of Healthy People 2000 (USD-
HHS, 2001), the rates of some disabling conditions, such as
significant hearing and vision impairments, decreased
between 1991 and 2000. The rates of many other conditions
however, either remained stable or increased during that
same decade. In the ensuing years, disabilities and chronic
public costs. The results of the Midcourse Review: Healthy
People 2010 (USDHHS, 2005a) demonstrate both positive
sionals. For instance, arthritis remains the leading cause of
disability in the United States. It affects approximately 43
million individuals and more than 20% of the adult popula-
tion. Asthma remains a national health concern for all ages,
most particularly for those under 18 years of age, and rep-
resents one of the four most common causes of chronic ill-
ness in children. Although asthma death rates for persons
over 65 years have declined, racial and ethnic disparities
persist. End-stage renal disease continues to increase, with
over 45% of all new cases attributed to type 2 diabetes.
Back pain will impact the lives of a staggering 80% of all
ethnicity, and occupation. Osteoporosis is estimated to be
present in 10% of all persons over the age of 50 (USDHHS,
2005a), with the additional risk of serious injury or death
following a fall. The need to address health issues of dis-
ability and chronic illness is vital to the well-being of
health of the country.
This chapter discusses important and necessary health
promotion and preventive efforts at every level. Although
treatment of chronic conditions has long been a mainstay of
health care in the United States and globally, limited atten-
tion has been paid to the additional health promotion
required to maintain and improve overall well-being of indi-
viduals with chronic conditions. Nor has enough attention
been directed to those same needs for people with physical or
psychological disabilities. This chapter begins with an
overview of disabilities and chronic illnesses, then discusses
the current national and global trends in addressing these
issues. The various organizations that focus on improving the
well-being of those affected, the impact on families, and the
role of the community health nurse in addressing the chronic
access for all ages and abilities are also discussed.
What does the word disabled mean to you? What thoughts
come to mind when you think about the word as it applies to
with inability,
something, whatever the reason, but usually through incom-
Morehead, 1995). is explained in the same volume
is
any illness that is prolonged, does not resolve spontaneously,
and is rarely cured completely; these diseases are often pre-
tality, morbidity, and cost (Centers for Disease Control and
a decidedly negative connotation, similar in nature to the typ-
ical societal view faced daily by people with disabilities.
Challenges differ from one individual to the next and
require different degrees of accommodation. Fortunately,
long-held negative views of disabled persons and their con-
ditions are being replaced with new and more positive
approaches that view individuals and their challenges from
a more holistic standpoint.
One such change in thinking about disability and chronic ill-
ness was expressed in
tioning, Disability, and Health (ICF), published by the
World Health Organization (WHO) in 2001. This document,
the result of 5 years of work, replaced International Classi-
fication of Impairments, Disabilities, and Handicaps
(ICIDH) (World Health Organization [WHO], 1980). Even
the change in terminology in the title showed the dramatic
shift in thinking by the World Health Assembly; both
impairments and handicaps were removed. In the revised
document, serves as a broad term for impair-
ments, activity limitations, or participation restrictions. It is
linked with , a term that encompasses all body
functions, activities, and participation.
cation system with standardized language and a way to view
the domains of health from a holistic vantage point. It took
into account body functions and structures, activities and
participation, environmental factors, and personal factors.
circumstances in terms of functioning, disability, and health.
biopsychosocial approach for assessing people with disabili-
ties, emphasizing the observation that no two people with the
same disease or disability have the same level of functioning.
 The purpose of the ICF reaches far beyond simply cat-
egorizing the health status of people with disabilities. The
studying health and health-related states, outcomes,
and determinations
Establish a common language for describing health
and health-related states to improve
communication between different users such as
health care workers, researchers, policy makers,
and the public, including people with disabilities
Permit comparison of data across countries, health
care disciplines, services, and time
Provide a systematic coding scheme for health
information systems
The document provides a roadmap for using the ICF, based
on experience with the ICIDH for more than 20 years. Table
26.1 shows the current and potential uses of the document
by various entities ranging from insurance companies and
health care providers to policy makers and educators.
ity and functioning, the following definitions serve to
explain the ICF in terms of health (WHO, 2001, p. 10):
are the physiologic functions of
body systems and include psychological functions.
are anatomic parts of the body
such as organs, limbs, and their components.
are problems in body function or
is the execution of a task or action by an
individual.
is involvement in a life situation,
including personal and interpersonal roles and
activities.
may have in executing activities.
are problems an individ-
ual may experience when involved in life
situations.
make up the physical,
social, and attitudinal environments in which peo-
ple live and conduct their lives.
background, life, and living that are not part of a
health condition or health status, such as gender,
habits, upbringing, coping styles, social
background, education, profession, past and current
experience, overall behavior pattern and character
style, individual psychological assets, and other
in disability at any level.
For the community health nurse, the ICF facilitates
assessment of an individual client based on a wide range of
factors. Disability or disease is just one factor to be consid-
ered in planning and implementing a care plan for clients in
the community. Two individuals may have the same disabil-
ity, such as a below-the-knee amputation, but their health
and well-being can be quite different. One may have a more
positive outlook, one may have more social support than the
other, or one may suffer more than the other from additional
health issues that impede rehabilitation. The community
health nurse must always consider the totality of the situa-
tion, including the biologic, psychological, sociocultural,
and environmental realms. Diseases and disabilities are con-
designation should be avoided: a disease or disability is
something one has, not something one is. Figure 26.1
depicts the interactions among the various components
addressed by the ICF in the evaluation and assessment of
clients with disabilities. It can serve as a useful model for
community health nursing practice in the overall assessment
of people with disabilities.
The 2002 release of the annual report by the WHO (The
World Health Report 2002: Reducing Risks, Promoting
Healthy Life) set a new standard for addressing global
health. It challenged the world community to focus more
attention on unhealthy behaviors that lead ultimately to
chronic disease, disability, and early mortality. The report
stressed that, although infectious diseases and malnutrition
require ongoing vigilance because they continue to plague
many parts of the world, they are not the only threat. It is
increasingly clear that lifestyle choices play a major role in
alike, and intervention at all levels (local, national, and inter-
national) is a high priority. With this new reality in mind, this
document had a twofold purpose: to quantify the most
important risks to health, and to assess the cost-effectiveness

Body functions
and structures
Environmental
of interventions designed to reduce those risks. The overall
risks and raise the healthy life expectancy of their popula-
No longer can health care providers across the globe
continue to address acute illness by itself; lifestyle and
behavior must be considered because of the impact they
have on healthy years of life. The risks to health that the
WHO report focused on include some that are the direct
result of poverty, but many can be more aptly linked to
ing health risks are (1) underweight, (2) unsafe sex, (3) high
blood pressure, (4) tobacco consumption, (5) alcohol con-
sumption, (6) unsafe water, sanitation, and hygiene, (7) iron
lesterol, and (10) obesity. Globally, these 10 health risks are
responsible for more than 33% of all deaths and untold dis-
can be directly related to lifestyle and behavioral choices.
Nutrition is vital to health; nutritional imbalances can
lead to severe chronic illness, disability, and premature
high cholesterol, and obesity (WHO, 2002). The prevalence
of obesity worldwide is estimated at more than 1 billion
ically obese (WHO, 2008). In stark contrast, there are 170
million underweight children in poor countries, more than
3 million of whom will die each year from malnutrition.
Being overweight increases the risk of coronary heart dis-
ease, stroke, diabetes, and some types of cancer. Malnutri-
tion and the lack of important nutrients can lead to a wide
array of preventable disabilities. For instance, the leading
ciency, and the leading cause of mental retardation and brain
ity. If countries can make even minimal strides toward
improving the health of their citizens, a dramatic improve-
ment in health outlook can occur within those countries and
worldwide. Governments must take a proactive role in
addressing the preventive health care needs of their citizens
Health condition
(disorder or disease)
Activities Participation
Personal
factors factors
(Display 26.1). A shift in focus from the most high-risk indi-
viduals to the general population is essential. Primary and
secondary prevention as the main focus is the approach that
public health care professionals have stressed for decades.
a shift in emphasis to health promotion efforts, it will be
appropriate for the years ahead.
research, improved surveillance systems, and better
access to global information
Development of effective, committed policies for
the prevention of health risks such as tobacco con-
sumption, unsafe sex associated with HIV/AIDS,
and unhealthy diet and obesity
Implementation of cost-effectiveness analysis to
identify the most cost-effective and affordable inter-
ventions to reduce priority health risks
Collaborative efforts (intersectoral and
international) to reduce major extraneous risk to
health caused by unsafe water, poor sanitation, or
lack of education
Supportive and balanced approach in addressing
these major health risks that includes government,
community, and individual action
Empowerment and encouragement of individuals to
make positive, life-enhancing health decisions (such
as eliminating tobacco use, excessive alcohol
consumption, unhealthy diet, and unsafe sex)
Adapted from World Health Organization. (2002). The world health
report 2002: Reducing risks, promoting healthy life. Geneva,
Switzerland: Author.
 Taken together, the ICF and the 2002 WHO report set
a standard for health care in the 21st century. Chronic dis-
ease and disability prevention are vital to world health. The
cost of health care treatment is high, but the cost in terms of
lost productivity and decreased quality of life is even higher.
Without control of preventable disability and chronic dis-
An estimated 650 million people live with disabilities world-
wide (United Nations [UN], 2007a). Factoring in the nearly 2
billion family members affected by the disability, the WHO
stressed that almost one-third of the world population is
directly impacted by disabilities. The sheer magnitude of this
issue, and the recognition that people with disabilities are a
world, led to the United Nations (U.N.) Convention on the
Rights of Persons with Disabilities in 2006. The Convention
was opened for signature in March 2007 and, as of May 2008,
convention include (United Nations [UN], 2007b):
Respect for inherent dignity and individual auton-
choices and independence of persons
Nondiscrimination
Full and effective participation and inclusion in
society
Respect for difference and acceptance of persons
with disabilities as part of human diversity and
humanity
Equality of opportunity
Accessibility
Equality between men and women
Respect for evolving capacities of children with
disabilities and respect for the right of children
with disabilities to preserve their identities
The convention, once entered into force, will be serviced by
both the U.N. Department of Economic and Social Affairs
Human Rights (Geneva). The United States was not one of the
signatories of the convention, joining countries such as
Pakistan, the Russian Federation, Saudi Arabia, Switzerland,
Ukraine, and Zimbabwe. Although the United States was an
active participant in committee work on the convention and
signing the document appeared related to issues of sover-
eignty. In a December 2006 press release from Ambassador
Richard Miller, U.S. Mission to the U.N. (2006), the follow-
the rights and dignities of persons with disabilities is embod-
ied in our vast array of strong national laws, notably the his-
toric Americans with Disabilities Act. . . . The United States
believes that the most effective way for states to improve the
real world situation of persons with disabilities from a legal
perspective is to strengthen their domestic legal frameworks
of the convention will only be realized in the coming years.
Building on the Americans with Disabilities Act (ADA,
discussed later in this chapter) the convention can only be
viewed as a positive step in the progress toward equality. It
should be noted that the National Council on Disability
(NCD) has taken an approach to the convention that is pro-
provide a baseline standard much lower than that provided for
in the ADA, the NCD still urged the signing of the treaty. In a
March 2007 letter to the President, they argued that signing
cil on Disability [NCD], 2008a, Preamble).
States, Healthy People 2010
areas of health and well-being that are most in need of atten-
tion. With its clearly delineated and measurable objectives,
Healthy People 2010
and state health initiatives, health care policy, research priori-
ties, and funding. In terms of disability and chronic illness,
Healthy People 2010 has placed added emphasis on conditions
providers, insurance companies, public health agencies, and
health care facilities of the need to act proactively to avoid the
economic toll that lack of attention can produce.
Healthy People 2010 (USDHHS,
2000) without some mention of Healthy People 2000 (USD-
HHS, 1991). A comparison of the two documents reveals
some striking differences regarding disabilities and chronic
conditions. Increased attention has been given to the growing
national need to reduce the incidence of disability and
chronic disease and improve the health of people affected by
them. In Healthy People 2000, only one priority area was
devoted to disability and chronic illness. Priority Area 17,
diabetes, with only limited attention to the broader range of
other disabilities (asthma, chronic kidney disease, arthritis,
deformities or orthopedic impairments, mental retardation,
peptic ulcer disease, visual and hearing impairments, and
overweight). In contrast, almost half of the Healthy People
2010 focus areas directly address chronic illness and disabil-
ity, and almost all of the focus areas can be related to these
most relevant to people with disabilities.
Healthy People 2010 is
somewhat different and more explicit than that used in the
represent the interactions between individuals with a health
2000, p. 25). Moreover,
This change in emphasis between the two documents
was noted in Healthy People 2010 (USDHHS, 2000), which
cited lack of parity between disabled and nondisabled popu-
lations in terms of several selected objectives: leisure-time
activity, use of community support programs, and receipt of
that the percentage of people with disabilities who reported
some type of leisure-time activity was the lowest of any of
the groups identified (including those older than
65 years of age and low-income persons). On the positive
side, the percentage of people with disabilities who reported
no leisure-time physical activity actually declined from the
1985 level of 35% to 29% in 1995, although it was still far
short of the 2000 target of 20%. Additional disparities noted
for people with disabilities included increased likelihood of
being overweight, adverse effects from stress, and reduced
rates of preventive services (e.g., tetanus boosters, Pap tests,
breast examinations, and mammograms). Recognition that
the health needs of disabled persons were not receiving
needed attention resulted in increasing the priority of
improving the health of people with disabilities.
Improving the health of the nation requires a multifac-
eted approach to improve parity among all individuals.
Healthy People 2010
munity across the nation deserves equal access to compre-
hensive, culturally competent, community-based health care
systems that are committed to serving the needs of the indi-

p.16). The goal of Healthy People 2010

prevent secondary conditions, and eliminate disparities

between people with and without disabilities in the U.S. pop-

tives have been selected to measure progress toward this goal

Healthy
People 2010
emphasis on healthy life-years and improved quality of life,
similar to the recommendations by the WHO (2002).
Although the issues of function stressed in the ICF (WHO,
2001) were not as explicit in Healthy People 2010, the 13
objectives indicate a growing emphasis on a holistic approach
that recognizes that life satisfaction is just as important to
health and well-being as preventive services. It also indicates
a growing realization that healthy life-years for persons with
disabilities equate to decreased health costs at local, state, and
national levels, just as they do for persons without disabilities.
Building on the Healthy People initiative, in 2005, then
current Surgeon General Richard Carmona released a Call
to Action to Improve the Health and Wellness of Persons with
Disabilities (USDHHS, 2005b). This document cited ongo-
ing challenges faced by persons with disabilities and their
families. Four major goals were proposed:
People nationwide understand that persons with
disabilities can lead long, healthy, productive lives.
is unique to this document; this approach is increasingly
Health care providers have the knowledge and tools
emphasized in health promotion education and will very
to screen, diagnose, and treat the whole person
likely be an important feature in efforts to reduce health care
with a disability with dignity.
costs.
Persons with disabilities can promote their own
The development of Healthy People 2020: The Road
good health by developing and maintaining healthy
Ahead is due for release in January 2010. This document
lifestyles.
will include the vision, mission, goals, focus areas, and
Accessible health care and support services promote
objectives for the next decade. Utilizing an extensive review
independence for persons with disabilities (p. 2).
of current and evolving research and national surveys, as
well as public and professional input, the document will pro-
accessible, comprehensive health care that enables persons
with disabilities to have a full life in the community with of the 21st century. This document will likely include insight
gained from the earlier Healthy People 2010 effort and the
Healthy People 2010 goals in this area. The emphasis placed Midcourse Review released in 2005. One emerging issue
on personal responsibility for maintaining a healthy lifestyle noted in the Midcourse Review was the recognition of

level data to locate and evacuate persons with disabilities,
(USDHHS, 2005a, p. 6-7). Of additional concern was the
gets. A 7% increase occurred in the proportion of adults who
expressed that negative feelings were impacting their lives;
32% in 2003 versus the 28% level reported in 1997. With
respect to employment, the proportion of adults with dis-
abilities who were employed dropped to between 1997 and
2003. As with the recession of 2001, the disproportionate
impact of the economic instability of 2008 on persons with
the employment goals set for 2010. Although the national
health priorities are not yet established, clearly, issues of
depression, employment parity, and disaster preparedness
will need to be addressed. In addition, as noted in the 2005
Call to Action, personal responsibility for
lifestyle choices will very likely have increasing emphasis.
Policies such as Healthy People 2010 are important features
of an overall plan to address the health of people with dis-
abilities and chronic diseases in the United States. Although
programs initiated, policy alone cannot assure individuals
with disabilities that the needed services and accommoda-
tions are or will be available. As has often been the case, an
rights are protected and that legal recourse is available if such
protection is denied. But, as is true for other issues of equal-
taken. The struggle for civil rights for disabled persons in this
country is still in its infancy, although it has begun to gain the
level of attention that racial and gender equality receive.
The (ADA) was
signed into law in 1990 to protect the civil liberties of the
many Americans living with disabilities. This legislation
with disabilities and their advocates made their voices heard
by repeatedly demanding an end to inferior treatment and
lack of equal protection under the law, which impeded their
daily lives. The ADA set the standard for a number of sub-
sequent laws that, together with pre-ADA legislation, offer a
broad spectrum of protections for disabled persons. These
additional laws are listed in Table 26.3 and cover a variety of
issues, including telecommunications, architectural barriers,
and voter registration.
basis of disability in employment, state and local govern-
ment, public accommodations, commercial facilities, trans-
portation, and telecommunications [and] also applies to the
tice [USDOJ], 2005, p. 3). For an individual to be protected
under the ADA, she must have a disability or some type of
relationship or association with an individual who has a
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
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
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
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
U.S. Equal Employment Opportunity Commission field
istration, or (4) the Federal Communications Commission.
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).
The responsibility of the U.S. Department of Justice,
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:
. Retrieved
complianceactiv.html.
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
national strategy (NCD, 2000). The NCD recommendations
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
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).
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
offer others an opportunity to learn more about the lives and
struggles of disabled persons. Each of the organizations

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
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
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-
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-
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
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
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.
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
disabilities or chronic illnesses.
The National Association of the Deaf (NAD), head-
ization that was established in 1880. As the oldest U.S.
organization serving this population, it has the stated mis-
activities that NAD is involved with include advocacy, cap-
tioned media, certification of
(ASL) professionals and interpreters, legal assistance, and
policy development and research (NAD, 2008a). ASL uses
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
54 million men, women, and children with disabilities in all
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
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
likely than nondisabled persons to have low incomes, are
Sign languages are not universal
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.
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
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.
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
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
public education, information and referral, and support for
increased availability of materials in (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
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.
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
prevent, and treat obesity and improve the lives of those
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-
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
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
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
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-
provide transportation to Veterans Administration (VA) med-
ical facilities and provide ongoing service at VA hospitals,
accessed at http://www.dav.org/.
Healthy People 2010 as it relates to
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
problems that a person with a disabling condition likely
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
overall well-being of the disabled or chronically ill. More-
over, a number of misconceptions have resulted that impede
progress in this area: (a) that all people with disabilities have
poor health, (b) that public health activities need to focus
only on preventing disability, (c) that there is no need for a
public health practice, and (d) that environment does not play
disabled persons as well as needs that are universal to all)
should greatly improve the outlook. This change of focus is
used in
Healthy People 2010:
a healthy environment to prevent medical and other second-
ary conditions, such as teaching people how to address their
health care needs and increasing opportunities to participate
In this age of rapid growth in technology, it is easy to forget
that clean water is a far more important commodity than hav-
ing the latest prescription drug or surgical procedure. All of
us, whether healthy, disabled, or chronically ill, require some
study of children with chronic illnesses. The 274 children
complications as a result of their illness. The study sam-
ple was obtained from the over 5,000 children (younger
than 14 years of age) who presented at an emergency
conditions such as asthma, chronic pulmonary disease,
hemodynamically significant cardiac disease, chronic
metabolic disease, sickle cell anemia, and HIV infection.
The study involved a parental questionnaire regarding
years, and parental perceptions of the need for vaccina-
contacted by phone to complete a separate survey regard-
high risk children. The researchers found that children
with asthma or cardiac disease showed the lowest rates of
for improved vaccination rates for high risk children
pediatricians points to the need for increased professional
cian for guidance on health promoting interventions such
basic elements to maintain health. Those elements are the
same all over the world and include clean air and water, a safe
place to live, sunshine, exercise, nutritious food, socializa-
self-evident as these health promoting elements may seem,
for the millions of persons who deal with disability, chronic
disease, or both, such basic needs seem too often to take sec-
ond place to other issues. It is equally problematic that pre-
ventive measures, most notably at the primary and secondary
levels, are often nonexistent or lacking (see Evidence-Based
Practice).
The issue of missed opportunities in health promotion
and prevention is depicted in Figure 26.2. The focus of the
health care delivery system is increasingly skewed toward
secondary and tertiary prevention efforts, and limited
emphasis is placed on the health promotion and primary pre-
vention needs of the population. Although this is a concern
for all persons, it is of particular importance for persons
with disabilities and chronic illnesses, because they are
more likely to have these needs ignored altogether. As
Figure 26.2 shows, an entire area of issues may be addressed
with a basically healthy person but not with a disabled or
chronically ill individual. Some areas of secondary and ter-
tiary prevention unique to persons with disabilities or
chronic illnesses may be completely ignored. This nonre-
ceipt of health promoting or preventive education or actions
as immunization, and that guidance should be clear, accu-
rate, and up-to-date.
As this study emphasizes, children who are most at risk for
the results of the 2005 National Health Interview Survey
showing that children with current asthma had a vaccina-
tion rate of only 29%. Although this rate was higher than
the reported rate for children without current asthma, it
underscores the need to reduce barriers to vaccination in
these children. One such method that can be utilized by the
community health nurse is to vigorously promote the need
with parents of children with chronic health conditions.
References:
Brim, S.N., Rudd, R.A., Funk, R.H., Callahan, D.B., &
season. Morbidity and Mortality Weekly Report, 56(09),
Esposito, S., Marchisio, P., Droghetti, R., Lambertini, L.,
coverage among children with high-risk medical
conditions. Vaccine, 24,
 100
Individuals with disabilities/chronic illness
Healthy individuals
Approximate percent of focus
50
Missed opportunities
0 but fail to address the basic needs for leisure-time activities,
Health Primary Secondary Tertiary
Promotion Prevention Prevention Prevention
vital to the health and well-being of those with disabilities or
chronic illnesses is of grave concern. For example, issues
such as sexuality are often not explored with the disabled or
chronically ill. This skewed view of the lifestyles, behaviors,
active all of her life, has developed severe arthritis. She
encounters a health care system that far too often focuses
placed squarely on her tertiary health promotion needs,
often at the expense of health-promoting or lifestyle-
enhancing needs. The result is a failure to recognize that the
issue for her than for a sighted person. She receives the
same medication therapy as a sighted person but may not be
offered a physical therapy program due to her disability.
Her need for physical therapy is no less important, but
locating an appropriate, safe, and easily accessible program
requires some additional work on the part of her provider.
At issue is that options potentially discussed with a sighted
person are more apt to be omitted completely, which may
A 20-year-old man with learning disabilities, who is
employed at a local factory, receives a regularly scheduled
physical examination with a new provider. He lives in a
, which is an out-of-home facility that
provides housing for people with disabilities in which rotat-
ing staff members provide care for 16 or more adults or any
number of children/youth younger than 21 years of age. It
excludes foster care, adoptive homes, residential schools,
correctional facilities, and nursing facilities (USDHHS,
for a tetanus booster and should also begin the series for hep-
health professionals and the public alike.
It is likely that disability or chronic illness serves as the
care community, including the community health nurse. As
a result, the disability or illness often drives the selection of
prevention efforts, to the possible exclusion of other, equally
important health issues. For example, for an individual with
a primary diagnosis of type 2 diabetes, secondary prevention
efforts often center on that disease (e.g., screening for dia-
betic retinopathy). The need to refer the client for a Pap test
or a baseline mammogram may be overlooked. Likewise, the
treatment plan may include a consultation with a dietitian
regular physical activity, a varied and interesting diet, fresh
prevent the development of depression, a common result of
chronic illness. Display 26.5 offers several examples of
missed opportunities in the areas of primary and secondary
prevention. It is of particular concern to the practice of com-
munity health nursing that the broad range of health promo-
tion and prevention needs of all clients be addressed.
A study by Wei, Findley, and Sambamoorthi (2006)
demonstrated the risk for missed opportunities for clinical
preventive services among women. Of the 3,183 individuals
atitis A, because he lives in a high-risk area of the western
One year later, at his regularly scheduled visit, it becomes
clear that he never received his immunizations. Apparently,
were provided, but clearly not in a manner appropriate for
this individual. With additional explanation and follow-up,
perhaps the outcome would have been quite different.
A 34-year-old woman who has been severely obese since the
birth of her last child (4 years ago) has not had a gynecologic
examination since that birth. She is aware of the need to have
regular examinations, yet she cannot bring herself to make an
appointment. The reason is that she knows she will have to be
courage to call for an appointment and tells the clerk that she
makes the appointment but does not keep it. This situation
could have been handled in a compassionate manner, recog-
nizing the painful experience that weighing is for many indi-
viduals and suggesting alternatives, one of which could have
been simply to bypass the scales until after the interview and
examination. At that point, the woman may have been more
amenable to the measurement and a more discreet area could
have been offered. In this case, the opportunities to provide
primary, secondary, and tertiary prevention were lost.
sampled in this study, 23% were disabled. When compared
to the other study participants, the disabled women were less
likely to receive cancer screening (mammograms and Pap
smears) within the recommended intervals. Interestingly,
cholesterol screening, and colorectal screenings as recom-
mended. The researchers found that, overall, having a usual
source of care and health insurance were predictive of pre-
ventive service receipt. They stressed the need for improving
risk and targeting efforts to reduce disparities.
It is a growing concern to those who are disabled, and to their
families and advocates, that the type and quality of the
health-related services, referrals, and care that they receive
may not be appropriate to their circumstances. This results in
increased illness and disability and potentially decreased
quality or length of life. One pointed example of this dispar-
ity involved a national sample of low-income female Medic-
aid recipients. Women with disabilities in this sample had
lower rates of receipt of medical services, and were much
less likely to receive cervical cancer screenings (Parish &
Ellison-Martin, 2007). Although the women each had similar
access to health care services, the disparities were of con-
cern. Not surprisingly, those women with disabilities were
less likely to report satisfaction with their care.
The issue of health care access was one of a number of
elements explored in a study involving 932 independently
living Massachusetts adults with a major disability (Wilber
et al., 2002). The purpose of the study was to determine
whether factors such as having a consistent primary care
provider, access to health promotion or disease prevention
programs, and accessible transportation were related to the
number and severity of secondary conditions experienced.
vidual and the fewer obstacles faced, the fewer secondary
secondary conditions in Healthy People 2010; the most
depression, spasms, and chronic pain.
Additional disparities may exist in services received by
those with chronic illness and disabilities. Racial and ethnic
differences in immunization rates were found in a study ana-
lyzing data from the National Health Interview Survey of
almost 2,000 individuals with diabetes (Egede & Zheng,
2003). Even after controlling for access, health care cover-
pneumococcal immunization were lower for certain
racial/ethnic groups, primarily Blacks. What is not known
from these results is whether the depressed immunization
rates resulted from client acceptance issues, from differen-
tial provider recommendations, or from some combination
of these factors.
A qualitative in-depth survey by Becker and Newsom
(2003) that examined the issue of disparities found that eco-
nomic status also appeared to affect dissatisfaction with
health care among chronically ill African Americans. In this
the quality and the quantity of their care than were middle-
income respondents. The potential impact of low satisfac-
tion for selected groups is of real concern in addressing the
ongoing needs of those individuals. Although neither study
explored further.
It is discriminatory practice when an individual
receives unequal, inappropriate, or limited services com-
pared with those offered to others. Although the difference
in treatment is often due to lack of understanding of the
needs of disabled persons, it is nonetheless discriminatory.
Such bias may not be intentional, but it can dramatically
affect the health of clients and must be changed.
The good news is that the incidence of unequal and
inappropriate practices can be reduced with education and
training of health care providers, agency staff, and insurance
carriers. A crucial aspect of community health practice is to
ensure that those individuals with disabilities or chronic ill-
nesses are afforded the best possible care, treatment options,
as are provided for nondisabled persons and those who do
not suffer from chronic illness.
Health promotion and primary, secondary, and tertiary
prevention activities are essential aspects of quality care for
all persons. Those with disabilities require specialized atten-
tion to needs resulting from or related to their disabilities,
yet they also require the same attention to health and well-
being as the rest of the population. Community health nurses
are in a prime position to advocate needed changes for those
with disabilities and chronic illnesses. Such changes can
include increased attention to health promotion and disease
prevention needs, accessible and appropriate delivery of
those services, and specialized treatment plans that incorpo-
(see Perspectives: Student Voices).
Families that have a member with a chronic illness or dis-
ability face many challenges. They are required to navigate
a health care system that they know little about and with
which they often feel at odds. They serve as advocates for
their member in need (whether child, spouse, or parent) and
often feel tired and frustrated from their efforts, especially if
they have been less than successful in meeting their goals.
Many are forced to ask for or demand assistance from health
care agencies, social services, or transportation sources to
achieve the level of care needed by the family member.
Many are required to open their home to others (e.g., com-
munity health nurses, social workers) to access the services.
Families may have little understanding of what services they
policies, or disjointed service delivery.
The community health nurse is usually not the first
health care professional that the family encounters. They
may already have been through a lengthy struggle to receive
assistance. In these circumstances, the nurse often is con-
fronted by a frustrated family that distrusts yet another
dence of the family by practicing consistency, following
through with promised actions, and always being truthful.

For as long as I can remember, I have wanted to work with
gram, I was so disappointed when I learned that we would
only have 7 weeks in our pediatric rotation. Then, I found
out about an opportunity to work with children at a school
ments, and performing hearing checks. Then I found out
that I would actually be working with school-aged children
with disabilities and their parents in a special after-school
health promotion program. The nurse I was assigned to
asked me to come in before the program started, so that she
Then she asked me something that made me worried; she
asked if I had ever worked with a child who used a wheel-
chair, or had a continuous insulin pump, or had seizures. I
told her that I had some experience in the hospital, and that
I was sure that I would be prepared for any health care
made me a bit worried. She explained to me that many
parents about their child. She suggested that one way to
give me a bit of information was to go home and do some
reading and look at some websites she recommended. One
in particular, the National Organization on Disability
help with the kids and their parents. She also directed me
to the Easter Seals Disability Services (http://www.easter-
seals.com), which has a great deal of information on pro-
grams that are currently available for children and adults. I
even learned that this organization used to be called the
they changed the name.
Eileen S.
Not all problems that the family faces can be remedied, and
even for problems that do have solutions, time and effort
may be needed to obtain the desired result.
A literature review of the needs of parents with chronically
ill children reported a number of common themes in the
studies surveyed, among them the need for normalcy and
certainty, the need for information, and the need for partner-
ship (Fisher, 2001). Although these needs were associated
with the presence of a chronically ill child in the family, the
same needs are likely to occur in other families. These are
certainly areas that can be addressed by the community
health nurse in a practical way.
Wong and Heriot (2007), found somewhat similar
results in their study of 35 parents of children with cystic
and friends experienced less emotional distress than those
used self-blame as a coping strategy were also more likely to
report experiencing depression and were more likely to
report lower levels of mental health in their children. Sug-
gestions to assist the family include parental counseling to
goals, and providing information on available supportive
social networks. With the current median life expectancy of
patients with CF well above 30 years, the issue of long-term
family support is vital.
One major obstacle for families with a disabled or chron-
ically ill member may be obtaining needed
Healthy People 2010 as
to increase, maintain, or improve the functional capabilities of
alternatives. Just because the technology exists does not mean
that it can be obtained. Often, the insurance carrier, whether
private or governmental, sets limits on which products can be
obtained or which brands are acceptable. The overriding issue
ily to learn about options and legal rights through a process of
trial and error. Intervention by the community health nurse
can greatly reduce the burden on the family. With so many
product lines available on the Internet, the nurse can assist
families in this area, especially those without access to or
understanding of computer technology. It is equally helpful
for the nurse to intervene with insurance providers if coverage
ing for the equipment from private agencies if possible. Refer-
ring families to community groups or organizations that pro-
that share similar struggles can provide a vital link to needed
services and can be contacted through self-help groups or
other sources. Here, the community health nurse can provide
expertise on available community resources.
Respite care is another area of great importance for
families of the disabled and the chronically ill. It can be emo-
tionally draining to meet the daily needs of a member who
cannot perform self-care. This often leads to caregiver
fatigue and increased stress. It is also important to recognize
the effect of the situation on noncaregivers in the family, par-
ticularly nondisabled siblings of a disabled child. With focus
placed on the needs of one member, children may feel that
their own needs are not as important. This can lead to behav-
ioral and health-related problems. Respite care offers some
needed relief to the family and allows for uninterrupted
attention to the nondisabled children. This service can occur
within the home or at an outside facility. Respite care may be
provided by a private organization at little or no cost to the
the insurance company or by the family itself. Whatever the

Anna Lopez is a mother of three children aged 2 to 9 years
old. The eldest, Ernesto, was diagnosed with severe Down
total care, and remains at home with his mother and
works long hours as a computer repairman for a large com-
pany. The have health insurance, but it does not cover addi-
tional expenses, such as day care for Ernesto. The family
they receive periodic visits from you, the community health
nurse, to evaluate his condition and check on the feeding
tube used for his nourishment. Physically, Ernesto is stable,
but you notice that Anna has been increasingly withdrawn
at the visits, rarely offering information, but responding to
questions appropriately. She seems less engaged with her
other children as well, only occasionally smiling at them.
1. At risk for depression related to ongoing caregiver
demands and lack of respite care
2. At risk for altered health status due to limited focus on
self-care needs
The community health nurse will discuss with the client the
need for a thorough physical assessment, including an eval-
uation for depression. The community health nurse will
contact the insurance provider to discuss day care/respite
options for Ernesto. If unavailable, local community organ-
izations will be contacted for appropriate referrals. In addi-
tion, the need for more frequent visits to the family will be
health and should be a priority in the overall treatment plan
of the family (see Using the Nursing Process).
With the enactment of the 1996 welfare reform legisla-
tion (the Personal Responsibility and Work Opportunity Rec-
mented that potentially affect families with a chronically ill
child, especially those living in poverty. Changes included
the stipulation of a 5-year lifetime limit on receipt of bene-
growing concern within the public health community. Smith,
Wise, and Wampler (2002) explored this issue in a study of
knowledge of welfare reform among families with a chroni-
cally ill child. They found that respondents often had incom-
plete knowledge of work requirements, even if they were
entitled to exemptions because their children received Sup-
plemental Security Income. In those cases, 37% of the
exemptions, and 70% had not applied for the exemptions.
This indicates that eligible families might not be receiving
the exemptions to which they are entitled, adding additional
and unnecessary burdens to families already at risk.
discussed with the insurance carrior to address the needs of
the mother as caregiver.
The community health nurse will discuss with the client
her concerns about her overall physical and mental health
and discuss some self-care options that may improve her
well-being: improved nutrition, physical activity, leisure
time options, and adjustment of family schedule to accom-
modate more free time for self-care.
for an evaluation, but after thinking it over for a week and
discussing it with her husband, she did so. Her husband was
relieved that she had suggested the appointment, because he
was growing increasingly concerned over her withdrawal
but did not know how to bring up the subject. The family
physician referred Anna to a psychologist for evaluation of
the depression. The insurance carrier agreed to increase
home visits on a short-term basis but did not have a respite
care option available for Ernesto. Fortunately, a local faith-
based community group was able to provide limited assis-
had raised children with similar disabilities and were willing
to stay with Ernesto and the other children once a week for
4 hours. This allowed Anna some free time to make appoint-
ments with her psychologist, shop, or visit friends. After
several months, Anna has begun to smile more and seems
much more relaxed at the home visits. The children are all
least the next 6 months. The need for ongoing attention to
her own self-care needs is emphasized with Anna by the
community health nurse.
Another study explored the relationship between welfare
status, health insurance status, and the health and medical care
received by children with asthma (Wood et al., 2002). The
been denied Temporary Assistance for Needy Families
(TANF) experienced more severe asthma symptoms and had
more acute care visits than children in families that did not
access the welfare system, (b) children of recent TANF appli-
cants were more likely to be uninsured or transiently insured
than those who had not applied, and (c) recent TANF appli-
this study is that it demonstrated the high-risk status of those
families with a chronically ill child and the need to provide
access to health insurance and health services.
Even for families that are ineligible for public assistance,
Employment options may be quite limited when a family has
a member with special needs. The family may have to remain
in a particular location to access needed health and social
services, reducing the possibility of increased earning poten-
The working family members may choose less favorable
employment options because the position is convenient or has
time position at a local convenience store that does not pay
particularly well in preference to a higher-paying, full-time
factory position because the store is close to home and allows
for frequent adjustments in schedule.
Having a chronically ill family member often means that
working individuals must take time off from work. Although
some legal protections are provided under the Family and
Medical Leave Act of 1993, the Act does not apply in all sit-
uations. More importantly, it allows only for time off; it does
not mandate payment during those periods. The choice
becomes an issue of taking unpaid time off or continuing to
work and deal with the needs of the family member as best
one can. Some individuals choose to work part-time or not to
work at all, so that they can care for family members. At a
cial commitments, these families may have to rely on only one
one considers the myriad needs of the disabled and chroni-
cally ill, many of which may not be covered by insurance.
Caregiver health needs and mental health status are yet
another area of concern for families who must provide for a
disabled or chronically ill member. One of the largest longitu-
provided the data for an investigation of the impact of informal
caregiving on the mental health status of caregivers (Cannuscio
et al., 2002). Using data collected over a 4-year period
more hours per week of care for a disabled spouse were six
times more likely than noncaregivers to report depressive or
anxious symptoms. The frequency of symptoms was elevated
but less dramatic if the women cared for a disabled or ill parent
attention to the needs of caregivers, the majority of whom are
women. A follow-up study by Cannuscio and colleagues (2004)
found that higher weekly time commitment to informal care
was associated with an increased risk of depression, regardless
of level of social support. For those with few social ties and
high spousal time commitment, the level of depressive symp-
appear to have an impact on depressive symptoms of care-
givers. Access to social ties was, however, strongly correlated
with more positive health outcomes in the caregivers (Cannus-
cio et al., 2004). Poor health outcomes, both physical and men-
tal, are of growing concern as the population ages and the need
for family caregiving rises. Recognizing that caregivers within
a family are at increased risk for poor health outcomes, the
community health nurse must select appropriate interventions
to address the health needs of the other family members.
Families of individuals with a disability or chronic ill-
ness are at increased risk for a number of negative conse-
quences. Although families do not all have the same level of
risk or disruption, the community health nurse should recog-
culties, poor physical or mental health, and a variety of other
challenges. They are often ill prepared to deal with the com-
plicated systems that must be accessed to obtain needed care.
The community health nurse is in an optimal position to
interpret those systems to the families and to advocate for the
needed care, services, and equipment. The nurse must view
the family holistically, recognizing additional needs that may
develop as a result of the situation they currently face.
is the design of products and environments
to be usable by all people, to the greatest extent possible,
Mace, founder of the Center for Universal Design (North
Carolina State University). Mace, who had suffered from
polio as a child, died suddenly in 1998, leaving behind a long
legacy of advocacy on behalf of accessibility in design.
For those who live with a disability or chronic disease,
and their family members, the issue of access is of utmost
importance. As was noted earlier, the cost to a family to
accommodate the needs of a disabled person can be enor-
mous. Consider, that, as the U.S. population ages, more and
more of us will have need of accessibility in housing, busi-
ness, and recreation in order to remain active and healthy as
long as possible. Accessibility was taken one step further in
the concept of universal design, making tools, houses, and
workplaces accessible to all. The cost of building our envi-
ronments in a way that promotes access for all can be far less
than the cost of remodeling those environments after the fact.
The issue of accessibility is not new. The ADA (dis-
cussed earlier) addresses issues of access in employment,
governmental building, and public accommodations. The
Fair Housing Accessibility Guidelines (HUD, 2008) pub-
lished in 1990 provides for design and construction of mul-
tifamily dwellings (four or more units) in accordance with
Public use and common use portions of the
dwellings are readily accessible to and usable by
persons with handicaps;
All doors within such dwellings which are
designed to allow passage into and within the
persons in wheelchairs; and
All premises within such dwellings contain the fol-
lowing features of adaptive design:
1. An accessible route into and through the dwelling;
2. Light switches, electrical outlets, thermostats,
and other environmental controls in accessible
locations;
3. Reinforcements in bathroom walls to allow later
installation of grab bars; and
4. Usable kitchens and bathrooms such that an
individual in a wheelchair can maneuver about
the space.
Universal design incorporates access, but access does not
necessarily imply universal design. The design of a commu-
a role in the overall health and well-being of those living
there. Universal design and access play a key role in this dis-
cussion, but the importance of accessible design is more far-
reaching. According to the CDC, the built environment
includes all of the physical parts of where we live and work
(e.g., homes, buildings, streets, open spaces, and infrastruc-
physical activity. For example, inaccessible or nonexistent
sidewalks and bicycle or walking paths contribute to seden-
tary habits. These habits lead to poor health outcomes such
as obesity, cardiovascular disease, diabetes, and some types
of cancer. (2006, p. 1)
 For those with existing disabilities, assuring ease of
access to all manner of recreation and exercise options is of
paramount importance. For those who may develop disabili-
ties or chronic illnesses, having the opportunities for healthy
participation in physical activity may forestall or prevent the
development of illness. For the community, having an envi-
ronment that promotes rather than restricts a healthy lifestyle
can be economically advantageous. Even schools have a role
to play (CDC, 2008a). Building new schools away from res-
idential areas decreases opportunities for exercise and after-
school activities. As parents are increasingly forced to drive
their children to school, the children remain sedentary, the
pollution from cars is increased, and the risk of automobile
accidents increases. Community design is a complicated and
evolving issue, but the point remains: a healthier population
may be achieved with attention to the environmental barriers
that impede healthy lifestyles for all persons.
This chapter has discussed a number of areas in which the
community health nurse plays a key role. It is important to
review those roles in the context of the individual, the fam-
ily, and the community as prime areas for nursing interven-
that the professional nurse takes on within the community. It
is helpful to review those roles and think about their appli-
cation to disabled and chronically ill clients, their families,
and the communities in which they live.
examples of the roles that community health nurses assume
in relation to disabilities and chronic illnesses. Take note of
each role that you participate in or observe while complet-
the various roles at each level, perhaps you can interview a
community health nurse during your clinical experience and
find examples of how she performs activities in each of
single issue with a client, the community health nurse serves
in a variety of roles and at different levels.
Consider as an example of the variety of roles and mul-
tilevel practice that the community health nurse assumes
with respect to a 55-year-old female client who uses a
examination because of the lack of accessible examination
tables at the local clinic; as a result, she has not had an
examination for more than 20 years. Recognizing the need
for a complete examination, the community health nurse
will aid the client in receiving the needed examination, pos-
sibly by ensuring that additional personnel are provided
Because this solution is temporary and less than optimal,
the nurse contacts a number of clinics in neighboring com-
nation table. Unfortunately, this clinic is 1 hour away. The
nurse then contacts a number of other community health
of women clients with this problem who have not received a
Community Level).
Through a coordinated effort with a local transporta-
tion company and the clinic, the nurse is able to arrange a
twice-yearly gynecologic screening program for the women
in the community who require special accommodations
Information sheets that discuss the need for annual gyneco-
logic examinations and advertise the program are distributed
to area public health nurses, employers, and health clinics
examinations provided over the next few years shows a 65%
increase in the number of women with special needs who
have received a gynecologic examination within the past
 This is not an uncommon scenario in the practice of
community health nursing. Often, the needs of an individual
open the door to areas of concern for many in a community
population.
Like nursing practice in general, the role of the com-
munity health nurse with respect to disabilities and chronic
illness requires broad and holistic practice. The complexity
of issues surrounding these conditions requires creativity,
tenacity, honesty, and, most of all, knowledge. Community
health nurses who are informed about the issues that affect
the disabled and chronically ill at local, state, and national
levels are prepared to offer assistance to their clients and to
their communities. Knowledge of civil rights for these indi-
viduals is crucial in serving as advocates.
The issues facing individuals and families with disabil-
ities require strong and sustained efforts to achieve results.
Although successes at the individual level are laudable, the
extent to which the health and well-being of those affected
is improved must be the ultimate goal. Community health
nursing is in a prime position to initiate and support efforts
to improve the health status of those populations. We can
either leave the issues to other professionals or use our
expertise and long history of caring for those less fortunate
to make major and lasting changes. It is up to us.
The issue of disability and chronic illness is of growing
importance in community health, both nationally and inter-
nationally. Through the efforts of the WHO, the interna-
tional community has been challenged to provide increased
attention to health promotion and disease prevention. Even
in less developed countries, behavioral patterns linked to
excesses in consumption (overweight and tobacco/alcohol
use) have an impact on the quality and quantity of healthy
years of life. The ICF provides a universal classification
system that standardizes language and takes into account
the biopsychosocial realms in health assessment and well-
being of disabled persons. Along with the World Health
Report 2002, this document now places the emphasis
squarely on prevention of disease and disability. This
means, of course, that the health promotion and disease pre-
vention needs of the disabled and chronically ill must be
given the same emphasis as the needs of those who are not
disabled or ill.
The aging of the U.S. population and the rise in
lifestyle-related illnesses such as diabetes and obesity are
often linked with increasing rates of disability. Prevention of
disability and disease is emphasized in Healthy People
2010, which serves as a wake-up call to Americans about the
need to give serious attention to health promoting and dis-
ease prevention activities. In this current edition of Healthy
People, unique emphasis is placed on health promotion and
disease prevention needs of those with disabilities and
chronic illness. It is no longer acceptable that these individ-
uals be treated solely for tertiary health needs. Research has
shown that when health promoting (lifestyle) issues are
addressed with these clients, the rates of secondary condi-
tions are reduced, including medical, social, emotional,
mental, family, and community problems. Like the ICF,
Healthy People 2010 takes the position that disability and
chronic conditions are not universally debilitating and that
the overall well-being and health of these individuals must
be a priority.
Legislation is but one step toward equality for those
affected by disabilities and chronic illnesses. The ADA has
legal protections for the disabled, but it is only the beginning.
Discrimination can occur at many levels; some is hurtful and
intentional, but most results from misunderstanding of the
needs and desires of disabled persons and their families. This
may even occur in relation to the provision of health care
because of lack of education. Improvement can be found only
with increased community education programs for profes-
sionals and the public that target the myths and misunder-
standings about those with disabilities and chronic illnesses.
Community health nurses are in a prime position to
advocate for the health needs of the disabled and chronically
ill. With a long history of serving those who are most vulner-
able, community health nurses can help make needed changes
at the individual, family, and community levels. Although it is
often easier to focus on the needs of the individual, those
needs are most often shared by many others. Nurses have long
recognized the need to collaborate with other professionals in
reaching the goal of improved health care for their clients; this
continues to be an important aspect of successful efforts on
behalf of the disabled and the chronically ill. It will take the
concerted efforts of many to implement the changes neces-
sary to improve the lives of those most affected, their families,
and the communities in which they live.
unusually heavy or struggle to open the lid of a jar or feel
that you were treated differently than someone else in the
receipt of services, take a moment to think. Think about the
challenges, struggles, and pain that face so many citizens.
Consider the impact of universal design at improving your
life or the life of a family member or friend. Although many
argue against improving accessibility of city streets and
sidewalks because of the expense, those same people may
curb that is just a bit too high.
1. Arrange to interview an individual with a disability
(e.g., hearing, vision, mobility) about the challenges
that he has faced in interactions with nondisabled
persons.
2. Visit some of the nongovernmental sites listed
under Internet Resources and read some of the per-
sonal stories that are included.
3. Take an inventory of your house or apartment and
chair. Would you even be able to stay in your cur-
rent residence?
4. As part of your regular clinical assignment in com-
munity health nursing, look at those clients and
families who are dealing with either a disability or

chronic illness and assess how often you or other
community health nurses have addressed health
promotion activities (e.g., healthy eating, physical
activity, leisure-time activities) with those clients.
5. Review your family history for chronic health con-
ditions. Are you at risk? If so, what have you done
to reduce your risk over the past 12 months?
American Council of the Blind. (2008). . ties Act. Retrieved August 19, 2008 from http://www.ncd.gov/
American Foundation for the Blind. (2008). About AFB.
Retrieved August 19, 2008 from http://www.afb.org/.
Becker, G., & Newsom, E. (2003). Socioeconomic status and dis-
satisfaction with health care among chronically ill African
Americans. American Journal of Public Health, 93
Cannuscio, C.C., Colditz, G.A., Rimm, E.B., Berkman, L.F.,
Jones, C.P., & Kawachi, I. (2004). Employment status, social
ties, and caregivers mental health. Social Science & Medicine,
Cannuscio, C.C., Jones, C., Kawachi, I., Colditz, G.A., Berkman,
L., & Rimm, E. (2002). Reverberations of family illness: A
longitudinal assessment of informal caregiving and mental
American Journal of
Public Health, 92,
Centers for Disease Control and Prevention. (2006). Impact of the
built environment on health. Retrieved August 19, 2008 from
http://www.cdc.gov/nceh/publications/factsheets/Impactof
theBuiltEnvironmentonHealth.pdf.
Centers for Disease Control and Prevention. (2007). Chronic dis-
ease prevention. Retrieved August 19, 2008 from http://www.
cdc.gov/nccdphp/.
Centers for Disease Control and Prevention. (2008a).
health and the built environment. Retrieved August 19, 2008 from
http://www.cdc.gov/healthyplaces/healthtopics/children.htm.
Centers for Disease Control and Prevention. (2008b). Summary
health statistics for the U.S. population: National Health Inter-
view Survey, 2006. Washington, DC: Government Printing
nchs/data/series/sr_10/sr10_236.pdf.
Disabled American Veterans. (2008). Building better lives for dis-
abled American veterans and their families. Retrieved August
19, 2008 from http://www.dav.org/.
Egede, L.E., & Zheng, D. (2003). Racial/ethnic differences in
adult vaccination among individuals with diabetes. American
Journal of Public Health, 93,
Esposito, S., Marchisio, P., Droghetti, R, Lambertini, L, Faelli, N.,
children with high-risk medical conditions. Vaccine, 24,
Fisher, H.R. (2001). The needs of parents with chronically sick
children: A literature review. Journal of Advanced Nursing, 36,
Grayson, G. (2003). Talking with your hands, listening with your
eyes. A complete photographic guide to American Sign
Language. Garden City Park, NY: Square One.
Guide Dogs for the Blind. (2008). About us. Retrieved August 19,
2008 from http://www.guidedogs.com.
Mace, R. (n.d.). About universal design: The Center for Universal
Design. Retrieved August 19, 2008 from http://design.ncsu.
edu/cud/index.htm.
Morehead, P., & Morehead, A. (Eds.). (1995). The new American
Webster handy college dictionary. New York: Penguin Books.
National Association of the Deaf. (2008a). American Sign
Language: Position statement National Association of the Deaf.
Retrieved August 19, 2008 from http://www.nad.org/
ASLposition.
National Association of the Deaf. (2008b). Inside NAD: Mission
statement. Retrieved August 19, 2008 from http://www.nad.
org/mission.
National Council on Disability. (1986). Toward independence: An
assessment of Federal laws and programs affecting persons
with disabilities: With legislative recommendations. Retrieved
August 19, 2008 from http://www.ncd.gov/newsroom/
publications/1986/publications.htm.
National Council on Disability. (2000). Promises to keep: A
decade of Federal enforcement of the Americans with Disabili-
newsroom/publications/2000/promises_1.htm.
National Council on Disability. (2005). NCD and the Americans
with Disabilities Act: 15 years of progress. Retrieved August
19, 2008 from http://www.ncd.gov/newsroom/publications/
2005/pdf/15yearprogress.pdf.
National Council on Disability. (2008a). Finding the gaps: A com-
parative analysis of disability laws in the United States to the
United Nations Convention on the Rights of Persons with Dis-
abilities (CRPD). Retrieved August 19, 2008 from http://www.
ncd.gov/newsroom/publications/index.htm.
National Council on Disability. (2008b). National Council on Dis-
.
Retrieved August 19, 2008 from http://www.ncd.gov/.
National Federation of the Blind. (2003). What is Braille and what
does it mean to the blind? Retrieved August 19, 2008 from
http://www.nfb.org/images/nfb/Publications/fr/fr15/Issue1/
f150113.html.
National Federation of the Blind. (2008). About the NFB. Retrieved
August 19, 2008 from http://www.nfb.org/nfb/Default.asp.
National Organization on Disability. (2004).
NOD/Harris Survey documents trends impacting 54 million
Americans. Retrieved August 19, 2008 from http://www.nod.org/
index.cfm?fuseaction Feature.showFeature&FeatureID 1422.
National Organization on Disability. (2008). About us & quick
links. Retrieved August 19, 2008 from http://www.nod.org.
Obesity Society. (2008). About the Obesity Society. Retrieved
October 14, 2008, from http://www.obesity.org/about/
Parish, S.L., & Ellison-Martin, M.J. (2007). Health-care access of
women Medicaid recipients: Evidence of disability-based dis-
parities. Journal of Disability Policy Studies, 18,
Smith, L.A., Wise, P.H., & Wampler, N.S. (2002). Knowledge of
welfare reform program provisions among families of children
with chronic conditions. American Journal of Public Health,
92,
The Body: The Complete HIV/AIDS Resource. (2008). United
States HIV/AIDS organizations. Retrieved August 19, 2008
from http://www.thebody.com/index/hotlines/other.html.
United Nations. (2007a). Relationship between development and
human rights. Retrieved August 19, 2008 from
http://www.un.org/esa/socdev/enable/convinfodevhr.htm.
United Nations. (2007b). Secretariat for the Convention on the
Rights of Persons with Disabilities. Retrieved August 19, 2008
from http://www.un.org/disabilities/default.asp?id 17.
U.S. Department of Health and Human Services. (1991). Healthy
People 2000: National health promotion and disease prevention
objectives (S/N 017-001-00474-0). Washington, DC: U.S. Gov-
U.S. Department of Health and Human Services. (2000).
Healthy People 2010: Understanding and improving health.
August 19, 2008 from http://www.health.gov/healthypeople/
Document/.
U.S. Department of Health and Human Services. (2001). Healthy
. Retrieved August 19, 2008 from
http://www.cdc.gov/nchs/data/hp2000/hp2k01.pdf.
U.S. Department of Health and Human Services. (2005a).
Midcourse review: Healthy People 2010. Washington, DC:
http://www.healthypeople.gov/data/midcourse/.
U.S. Department of Health and Human Services. (2005b). The
wellness of persons with disabilities. Washington, DC:
http://www.surgeongeneral.gov/library/disabilities/calltoaction/
calltoaction.pdf.
U.S. Department of Health and Human Services. (2006). Deliver-
munity integration. Retrieved August 19, 2008 from http://www.
hhs.gov/ocr/complianceactiv.html.
U.S. Department of Housing and Urban Development (2008). Fair
housing accessibility guidelines. Washington, DC: Government
U.S. Department of Justice. (2005). A guide to disability rights
laws. Retrieved August 19, 2008 from http://www.usdoj.gov/
crt/ada/cguide.htm.
U.S. Mission to the United Nations. (2006). Explanation of Position
by Ambassador Richard T. Miller, U.S. Representative to the UN
Economic and Social Council, on the Convention on the Rights of
Persons with Disabilities, Agenda Item 67(b), in the General
Assembly. [USUN Press Release # 396(06)]. Retrieved August
19, 2008 from http://www.usunnewyork.usmission.gov/press_
releases/20061213_396.html.
Wei, W., Findley, P.A., & Sambamoorthi, U. (2006). Disability and
receipt of clinical preventive services among women.
Health Issues, 16,
Wilber, N., Mitra, M., Walker, D.K., Allen, D., Meyers, A.R., &
Tupper, P. (2002). Disabilities as a public health issue: Findings
Conditions. The Milbank Quarterly, 80,
Wong, M.G., & Heriot, S.A. (2007). Parents of children with cys-
Child: Care,
Health and Development, 34
Wood, P.R., Smith, L.A., Romero, D., Bradshaw, P., Wise, P.H., &
Chavkin, W. (2002). Relationships between welfare status, health
insurance status, and health and medical care among children
with asthma. American Journal of Public Health, 92,
impairments, disabilities, and handicaps. Geneva, Switzerland:
Author.
functioning, disability and health. Geneva, Switzerland: Author.
World Health Organization. (2002). The World Health Report 2002.
Reducing Risks, promoting healthy life. Geneva, Switzerland: Author.
World Health Organization. (2008). Obesity and overweight.
Retrieved August 19, 2008 from http://www.who.int/
dietphysicalactivity/publications/facts/obesity/en/print.html.
Bartlett, J.G., & Finkbeiner, A.K. (2006). Guide to living with
HIV infection: Developed at the Johns Hopkins AIDS Clinic.
Baltimore: Johns Hopkins University Press.
Becker, G., & Newsom, E. (2005). Resilience in the face of seri-
ous illness among chronically ill African Americans in later
life. Journal of Gerontology, 60B
Berke, E.M., Koepsell, T.D., Moudon, A.V., Hoskins, R.E., &
Larson, E.B. (2007). Association of the built environment with
physical activity and obesity in older adults. American Journal
of Public Health, 97,
Blomquist, K.B. (2007). Health and independence of young
adults with disabilities: Two years later. Orthopaedic Nursing,
26,
Brown, S. (2007). Universal design and me. Inside MS, 25(4),
Chen, Y., Yi, Q., Wu, J., & Li, F. (2007). Chronic disease status,
self-perceived health and hospital admissions are important pre-
Vaccine, 25
Cohen, R.M. (2008). Strong at the broken places: Five voices of ill-
ness, one chorus of hope. New York: Harper Collins, Publishers.
Downing, M.J. (2008). The role of home in HIV/AIDS: A visual
approach to understanding human-environment interactions in
the context of long-term illness. Home and Place, 14,
Dunlop, D.D., Song, J., Manheim, L.M., Daviglus, M.L., &
Chang, R.W. (2007). Racial/ethnic differences in the develop-
ment of disability among older adults. American Journal of
Public Health, 97,
Edwards, L. (2008). A life disrupted: Getting real about chronic
illness in your twenties and thirties. New York: Walker &
Company.
Fan, A.Z., Strine, T.W., Jiles, R., & Mokdad, A.H. (2008). Depres-
sion and anxiety associated with cardiovascular disease among
persons aged 45 years and older in 38 states of the United
States, 2006. Preventive Medicine, 46
Gee, G.C., Spencer, M.S., Chen, J., & Takeuchi, D. (2007). A
nationwide study of discrimination and chronic health conditions
among Asian Americans. American Journal of Public Health, 97,
Grabar, S., Lanoy, E., Allavena, C., Mary-Krause, M., Bentata,
illness and subsequent survival before and after the advent of
combined antiretroviral therapy. HIV Medicine, 9,
Gruman, J. (2007). Aftershock: What to do when the doctor gives
New
York: Walker & Company.
Herwig, O. (Ed.). (2008). Universal design: Solutions for a barrier-
free living. Basel, Switzerland: Birkhauser.
Jordon, W.A. (2008). Universal design for the home: Great-looking,
great-living design for all ages, abilities, and & circumstances.
Beverly, MA: Quarry Books, Inc.
Lehmann, I., & Crimando, W. (2008). Unintended consequences
of state and federal antidiscrimination and family medical leave
legislation on the employment rates of persons with disabilities.
Rehabilitation Counseling Bulletin, 51
Lutz, B.J., & Bowers, B.J. (2003). Understanding how disability is
Rehabilitation
Nursing, 28,
Qui, Y., & Li, S. (2008). Stroke: Coping strategies and depression
among Chinese caregivers of survivors during hospitalization.
Journal of Clinical Nursing, 17,
Richardson, L.C., Wingo, P.A., Zack, M.M., Zahran, H.S., &
King, J.B. (2008). Health-related quality of life years in cancer
survivors between ages 20 and 64 years. Cancer, 112(6),
Sun, H., Zhang, J., & Fu, X. (2007). Psychological status, coping,
and social support of people living with HIV/AIDS in Central
China. Public Health Nursing, 24,
Thomsett, K., & Nickerson, E. (1993). Missing words. The family
handbook on adult hearing loss. Washington, DC: Gallaudet
University Press.
White, R.T., & Pope, C. (2008). The globalization of AIDS. Oxford,
UK: Taylor & Francis, Inc.
Zhao, G., Ford, E.S., Li, C., & Mokdad, A.H. (2007). Compliance
with physical activity recommendations in U.S. adults with dia-
betes. Diabetic Medicine, 25
American Council of the Blind: http://www.acb.org
American Diabetes Association: http://diabetes.org
American Foundation for the Blind: http://afb.org
American Heart Association: http://www.americanheart.org
Center for Universal Design (NC State University): http://www.
design.ncsu.edu/cud/
Disabled American Veterans: http://www.dav.org/
Easter Seals Disability Services: http://www.easterseals.com/site/
PageServer
Family Health International: http://www.fhi.org/en/index.htm
Guide Dogs for the Blind: http://www.guidedogs.com
National Association to Advance Fat Acceptance: http://naafa.org
National Association of the Deaf: http://www.nad.org
National Center for Health Statistics: http://www.cdc.gov/nchswww
National Council on Disability: http://www.ncd.gov
National Federation of the Blind: http://www.nfb.org
National Institute of Diabetes & Digestive & Kidney Diseases:
http://www.niddk.nih.gov
National Organization on Disability: http://www.nod.org
Obesity Society: http://www.obesity.org
http://www.
omhrc.gov
Robert Wood Johnson Foundation: http://www.rwjf.org
The Body: The Complete HIV/AIDS Resource:
http://www.thebody.com/index/hotlines/other.html
United States Access Board: http://www.access-board.gov/
Rights: http://www.hhs.gov/ocr
U.S. Department of Justice (Americans with Disabilities Act
Home Page): http://www.usdoj.gov/crt/ada/adahom1.htm
Universal Design Alliance: http://www.universaldesign.org/
Women with Disabilities (The National Health Information
Center): http://www.4woman.gov/wwd