Ch34 Chronic Illness

Key Terms Learning Objectives

34Clients With Disabilities and Chronic Illnesses

● Activity

● Activity limitations

● Americans with Disabilities Act

● American Sign Language

● Assistive devices and technology

● Body functions

● Body structures

● Braille

● Chronic illness

● Congregate care facilities

● Disability

● Environmental factors

● Functioning

● Handicap

● Health promotion

● Impairments

● National Association of the Deaf

● Participation

● Participation restrictions

● People with disabilities

● Personal factors

● Secondary conditions

Upon mastery of this chapter, you should be able to:

● Discuss the national and global implications of disability andchronic illness.

● Describe the economic, social, and political factors affecting thewell-being of individuals with disabilities and chronic illness.

● Provide an example of primary, secondary, and tertiary preventionpractices for disabled individuals.

● Describe the Americans with Disabilities Act.

t some point in our lives, most of us will be diag-nosed with a chronic illness or develop some type ofdisability. We may be lucky enough to get early di-

agnosis and treatment of our health conditions so that theycan be easily managed. We might find ourselves temporarilyincapacitated, unable to manage our daily lives, and needingassistance from others. We can hope our ability to resumemore normal activities will return swiftly. An estimated 54million Americans (almost 20% of the population) live withsome ongoing level of disability (United States Departmentof Health and Human Services [USDHHS], 2001). The hu-man costs associated with disabilities aside, the cost of directmedical care and indirect annual costs related to disabilityhave reached almost $300 million in the United States alone.

The Final Review of Healthy People 2000 (USDHHS,2001) indicated that, although rates of some disabling condi-tions such as significant hearing and vision impairments de-creased between 1991 and 2000, the rates of many other con-ditions either remained stable or increased. For instance,arthritis is currently the leading cause of disability in the

United States. It affects approximately 43 million individualsand more than 20% of the adult population. Asthma, a grow-ing national health concern, is responsible for approximately500,000 hospitalizations, 5000 deaths, and 134 million re-stricted-activity days each year. Since 1991, the number ofpeople with diabetes who have developed end-stage renal dis-ease has almost tripled. For persons younger than 45 years ofage, chronic back pain now ranks as the most frequent causeof limitations in activity, the second leading cause of physicianvisits, and the third most common cause of surgery (USDHHS,2001). The need to address health issues of disability andchronic illness is vital to the well-being of affected individualsand families and crucial to the financial health of the country.

Health promotion and preventive efforts at every levelare necessary and are discussed in this chapter. Althoughtreatment of chronic conditions has long been a mainstay ofhealth care in the United States and globally, little attentionhas been paid to the additional health promotion required tomaintain and improve overall well-being of individuals withchronic conditions. Nor has enough attention been directed

810 UNIT 7 Promoting and Protecting the Health of Vulnerable Aggregates

A

R E S E A R C H : B R I D G E T O P R A C T I C E

HEALTH PROMOTION CLASSES FOR INDIVIDUALSWITH INTELLECTUAL DISABILITIES

Marshall, D., McConkey, R., & Moore, G. (2003). Obe-sity in people with intellectual disabilities: The impactof nurse-led health screenings and health promotion ac-tivities. Journal of Advanced Nursing, 41, 147–153.

The high rates of obesity in people with intellectualdisabilities prompted this study of the impact of healthpromotion classes on weight loss. Physical health andwell-being of individuals with intellectual disabilitieshas received much less attention than those of nondis-abled populations. This two-part study focused on theimpact of health screening versus health promotionclasses directed at weight control, which discussedhealthy eating and exercise. The initial sample included464 individuals from Northern Ireland, 10 years of ageand older, who were attending a special school or daycenter or living in a residential facility; 73% were as-sessed as fully mobile, 15% required assistance withwalking, and 12% were wheelchair users.

Individuals were assessed for body mass index(BMI), hypertension, cholesterol, smoking, multiplerisks, and referrals (to their general practitioner or pro-vided with health promotion advice). Of those assessed,64% of the adults were overweight or obese, an in-crease from 52% for this population 6 years previously.This sample received only health screening, and onlyone third of those identified as needing to lose weight

took action, weight reduction was achieved only inthree cases.

Conversely, a smaller sample (n � 25) was recruitedto participate in health promotion sessions (six to eight2-hour sessions), which focused on healthy eating andexercise. At initial evaluation, 20% were normal or un-derweight, 36% were overweight, 12% were obese, and32% were very obese. After the intervention, 2 peoplewho had been underweight were normal weight, 1moved from the obese to the overweight category, and 3very obese people were classified as obese.

The study’s findings suggested that implementing aproactive approach with intellectually disabled personscan have positive results in weight reduction even overas short a period as 6 weeks. Identifying weight lossneeds and high-risk status alone had very limited impacton those individuals in terms of normalizing weight.Overall, the study supports other research showing thatpeople with intellectual disabilities suffer from higherlevels of obesity than nondisabled persons do. More-over, health screenings alone have a limited impact onimproving obesity levels in this population. Taking anactive role in providing health promotion education,even over a short period, appears much more effective inachieving the health goal of normalizing weight for in-tellectually disabled persons. The authors argue thatsuitable exercise and healthy eating activities are vitalfor improving the health and well-being of this popula-tion and should be encouraged.

to those same needs for people with physical or psychologi-cal disabilities (see Research: Bridge to Practice). This chap-ter begins with an overview of disabilities and chronic ill-nesses, and thereafter discusses the current national andglobal trends in addressing these issues. The various organi-zations that focus on improving the well-being of those af-fected, the impact on families, and the role of the communityhealth nurse in addressing the health care needs of individu-als, families, and aggregates are also discussed.

PERSPECTIVES ON DISABILITY,CHRONIC ILLNESS, AND HEALTH

What does the word disabled mean to you? What thoughtscome to mind when you think about the word as it applies toan individual? It is defined in one dictionary as “the incapac-ity to do something because of a handicap—physical, mental,etc.” (Morehead & Morehead, 1995). It is linked with inabil-ity, which is defined as “the lack of ability to do something,whatever the reason, but usually through incompetence, weak-ness, lack of training, etc.” (Morehead & Morehead, 1995).Handicap is explained in the same volume as “any encum-brance or disadvantage”. Each of these definitions provides adecidedly negative connotation, similar in nature to the typicalsocietal view faced daily by people with disabilities.

Challenges differ from one individual to the next and re-quire different degrees of accommodation. Fortunately,long-held negative views of disabled persons and their con-ditions are being replaced with new and more positive ap-proaches that view individuals and their challenges from amore holistic standpoint.

International Classification ofFunctioning, Disability, and Health

One such change in thinking about disability and chronic ill-ness was expressed in International Classification of Func-tioning, Disability, and Health (ICF), published by theWorld Health Organization (WHO) in 2001. This document,the result of 5 years of work, replaces International Classifi-cation of Impairments, Disabilities, and Handicaps (ICIDH)(WHO, 1980). Even the change in terminology in the titleshows the dramatic shift in thinking by the World Health As-sembly; both impairments and handicaps were removed. Inthe revised document, disability serves as a broad term forimpairments, activity limitations, or participation restric-tions. It is linked with functioning, a term that encompassesall body functions, activities, and participation.

The ICF is an attempt to provide a universal classifica-tion system with standardized language and a way to viewthe domains of health from a holistic vantage point. It takesinto account (1) body functions and structures, (2) activitiesand participation, (3) environmental factors, and (4) personalfactors. This allows a multidimensional evaluation of an in-dividual’s circumstances in terms of functioning, disability,

and health. Melding the “medical model” of health andhealth care for disabled persons with the “social model,” theICF provides a biopsychosocial approach for assessing peo-ple with disabilities; emphasis is placed on the observationthat no two people with the same disease or disability havethe same level of functioning (see The Global Community).

The purpose of the ICF reaches far beyond simply cate-gorizing the health status of people with disabilities. Specificaims of the document are stated as follows (WHO, 2001, p. 5):• Provide a scientific basis for understanding and studying

health and health-related states, outcomes, and determi-nations

CHAPTER 34 Clients With Disabilities and Chronic Illnesses 811

T H E G L O B A L C O M M U N I T Y

MEASURING QUALITY OF LIFE IN CHRONICALLYILL CHINESE PEOPLE

Hwu, Y., Coates, V.E., Boore, J.R.P., & Bunting,B.P. (2002). The Concept of Health Scale. Developedfor Chinese people with chronic illness. Nursing Re-search, 51, 292–301.

Recognizing the paucity of information regarding theconcept of health in Chinese people with chronic ill-ness, a scale was developed to help measure this con-cept. Utilizing a two-stage process, the tool wasinitially developed and tested with 80 Taiwanese in-dividuals who were older than 20 years of age, spokeMandarin, and had been diagnosed with a chronic ill-ness for a minimum of 1 year. The resulting 34-itemself-report questionnaire was then tested with a con-venience sample of 372 individuals meeting the samecriteria.

The overall study findings were as follows. Theconcept of health for this population was identified instructural terms as a construct with three dimensions:physical, psychological, and spiritual. From a culturalaspect, health was related to the specific first-orderfactors of (1) independence, (2) physical functioning,(3) contentment in social interaction, (4) zest for life,(5) serenity, and (6) meaning. Viewing the concept ofhealth in this population from a cultural perspective,the meaning of health was a comprehensive term thatreferred to a broad range of quality-of-life factors.This holistic approach is consistent with a belief thatharmony is achieved through the interaction of the in-dividual, the society, and the natural universe. The re-searchers suggested further testing of the scale todetermine whether quality of life measures are higherfor patients with a positive concept of health than forpatients with a more negative concept, as well as test-ing with different cultural groups.

• Establish a common language for describing health andhealth-related states in order to improve communicationbetween different users such as health care workers, re-searchers, policy makers, and the public, including peoplewith disabilities

• Permit comparison of data across countries, health caredisciplines, services, and time

• Provide a systematic coding scheme for health informa-tion systems

The document provides a roadmap for using the ICF, basedon experience with the ICIDH for more than 20 years. Table34–1 shows the current and potential uses of the documentby various entities ranging from insurance companies andhealth care providers to policy makers and educators.

In addition to the definitions of disability and function-ing discussed previously, the following definitions serve toexplain the ICF in terms of health (WHO, 2001, p. 10):• Body functions are the physiologic functions of body

systems and include psychological functions.• Body structures are anatomic parts of the body such as

organs, limbs, and their components.• Impairments are problems in body function or structure,

such as a significant deviation or loss.• Activity is the execution of a task or action by an indi-

vidual.• Participation is involvement in a life situation, including

personal and interpersonal roles and activities.• Activity limitations are difficulties an individual may

have in executing activities.• Participation restrictions are problems an individual

may experience when involved in life situations.• Environmental factors make up the physical, social, and

attitudinal environments in which people live and conducttheir lives.

• Personal factors are the features of an individual’s back-ground, life, and living that are not part of a health condi-tion or health status, such as gender, race, age, other health

conditions, fitness, lifestyle habits, upbringing, copingstyles, social background, education, profession, past andcurrent experience, overall behavior pattern and characterstyle, individual psychological assets, and other charac-teristics—all or any of which may play a role in disabilityat any level.

For the community health nurse, the ICF facilitates as-sessment of an individual client based on a wide range of fac-tors. The disability or disease is just one factor to be consid-ered in planning and implementing a care plan for clients in


T A B L E 3 4 – 1

Applications of the InternationalClassification of Functioning, Disability, andHealth

Statistical Tool Collection and recording of data:• Population studies & surveys• Management information systems

Research Tool Measure:• Outcomes• Quality of life• Environmental factors

Clinical Tool • Needs assessment• Matching treatments with specific conditions• Vocational assessment• Rehabilitation• Outcome evaluation

Social Policy Tool • Social security planning• Compensation systems• Policy design and implementation

Educational Tool • Curriculum design• Raising awareness• Undertaking social action

(From World Health Organization. [2001]. International classi-fication of functioning, disability and health. Geneva, Switzer-land: Author.)

Health condition(disorder or disease)

Environmentalfactors

Personalfactors

Bodyfunctions and

structuresParticipationActivities

F I G U R E 3 4 – 1 . Model offunctioning and disability. (WHO. [2001]. ICFintroduction. Geneva, Switzerland: Author.)

the community. Two individuals may have the same disabil-ity, such as a below-the-knee amputation, but their health andwell-being can be quite different. One may have a more pos-itive or a more cynical outlook, one may have more socialsupport than the other, or one may suffer more than the otherfrom additional health issues that impede rehabilitation.What the community health nurse must always consider isthe totality of the situation, including the biologic, psycho-logical, sociocultural, and environmental realms. Diseasesand disabilities are conditions, yet a client may often be re-ferred to as “the paraplegic” or “the amputee” and not by hisor her name. This type of designation should be avoided: adisease or disability is something one has, not something oneis. Figure 34–1 depicts the interactions among the variouscomponents addressed by the ICF in evaluation and assess-ment of clients with disabilities. It can serve as a usefulmodel for community health nursing practice in the overallassessment of people with disabilities.

The World Health Report

The 2002 release of the annual report by WHO (The WorldHealth Report 2002: Reducing Risks, Promoting HealthyLife) set a new standard for addressing global health. It chal-lenges the world community to focus more attention on un-healthy behaviors that lead ultimately to chronic disease, dis-ability, and early mortality. The report stresses that althoughinfectious diseases and malnutrition require ongoing vigi-lance because they continue to plague many parts of theworld, they are not the only threat. It is increasingly clear thatlifestyle choices play a major role in morbidity and mortalitylevels in affluent and poor countries alike, and interventionat all levels (local, national and international) is a high prior-ity. With this new reality in mind, this document has a two-fold purpose: (1) to quantify the most important risks tohealth and (2) to assess the cost-effectiveness of interven-tions designed to reduce those risks. The overall goal is “tohelp governments of all countries lower these risks and raisethe healthy life expectancy of their populations” (WHO,2002, p. 7).

No longer can health care providers across the globecontinue to address acute illness by itself; lifestyle and be-havior must be considered because of the impact they haveon healthy years of life. The risks to health that the WHO re-port focused on include some that are the direct result ofpoverty, but many can be more aptly linked to excesses, no-tably in the more affluent countries. The 10 leading healthrisks are (1) underweight, (2) unsafe sex, (3) high blood pres-sure, (4) tobacco consumption, (5) alcohol consumption, (6)unsafe water, sanitation, and hygiene, (7) iron deficiency, (8)indoor smoke from solid fuels, (9) high cholesterol, and (10)obesity. Globally, these 10 health risks are responsible formore than 33% of all deaths and untold disability. Half ofthese risks—tobacco and alcohol consumption, high bloodpressure, high cholesterol, and obesity—can be directly re-lated to lifestyle and behavioral choices.

Nutrition is vital to health; nutritional imbalances canlead to severe chronic illness, disability, and prematuredeath. Of the leading 10 health risks, 5 are directly related toconsumption: underweight, hypertension, iron deficiency,high cholesterol, and obesity. The prevalence of obesityworldwide is estimated at more than 1 billion adults, withsome 300 million who can be classified as clinically obese.In stark contrast, there are 170 million underweight childrenin poor countries, more than 3 million of whom will die eachyear from malnutrition. Being overweight increases the riskof coronary heart disease, stroke, diabetes, and some types ofcancer. Malnutrition and the lack of important nutrients canlead to a wide array of preventable disabilities. For instance,the leading cause of acquired blindness in children is vitaminA deficiency, and the leading cause of mental retardation andbrain damage is iodine deficiency (WHO, 2002).

The significance of the WHO report lies in its simplic-ity. If countries can make even minimal strides in improvingthe health of their citizens, a dramatic improvement in healthoutlook can occur within those countries and worldwide.What is required is for governments to take a proactive rolein addressing the preventive health care needs of their citi-zens (Display 34–1). A shift in focus from the most high-riskindividuals to the general population is essential. Primaryand secondary prevention as the main focus is the approachthat public health care professionals have stressed fordecades. As difficult as it has been in the United States to im-


D I S P L A Y 3 4 – 1

WHO Recommendations to Improve GlobalHealth

• Government/health ministry support for scientific re-search, improved surveillance systems, and betteraccess to global information

• Development of effective, committed policies for theprevention of health risks such as tobacco con-sumption, unsafe sex associated with HIV/AIDS,and unhealthy diet and obesity

• Implementation of cost-effectiveness analysis toidentify 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 byunsafe water, poor sanitation, or lack of education

• Supportive and balanced approach in addressingthese major health risks that includes government,community, and individual action

• Empowerment and encouragement of individuals tomake positive, life-enhancing health decisions(such as eliminating tobacco use, excessive alcoholconsumption, unhealthy diet, and unsafe sex)

Adapted from World Health Organization. (2002). The worldhealth report 2002: Reducing risks, promoting healthy life.Geneva, Switzerland: Author.

plement a shift in emphasis to health promotion efforts, itwill be interesting to see if this “call to action” by WHO willresult in less emphasis on tertiary prevention. The old adage,“An ounce of prevention is worth a pound of cure,” is mostappropriate for the years ahead.

Taken together, the ICF and the 2002 WHO report set astandard for health care in the 21st century. Chronic diseaseand disability prevention are vital to world health. The costof health care treatment is high, but the cost in terms of lostproductivity and decreased quality of life is even higher.Without control of preventable disability and chronic dis-ease, these conditions could very well become the “newplagues” of the coming decades.

Healthy People 2010

The most influential document addressing health in theUnited States is Healthy People 2010 (USDHHS, 2000),which defines areas of health and well-being that are most inneed of attention. With its clearly delineated and measurableobjectives, Healthy People 2010 has far-reaching influenceon national and state health initiatives, health care policy, re-search priorities, and funding. In terms of disability andchronic illness, Healthy People 2010 has placed added em-phasis on conditions expected to take a toll on the nation’shealth in the coming years. It also reflects a growing realiza-tion by health care providers, insurance companies, publichealth agencies, and health care facilities of the need to actproactively to avoid the economic toll that lack of attentioncan produce (see Bridging Financial Gaps).

It is difficult to discuss Healthy People 2010 (USDHHS,2000) without some mention of Healthy People 2000 (USDHHS, 1991). A comparison of the two documents re-veals some striking differences regarding disabilities andchronic conditions. Increased attention has been given to thegrowing national need to reduce the incidence of disabilityand chronic disease and improve the health of people af-fected by them. In Healthy People 2000, only one priorityarea was devoted to disability and chronic illness. PriorityArea 17, “Diabetes and Chronic Disabling Conditions,” em-phasized diabetes with only limited attention to the broaderrange of other disabilities (asthma, chronic kidney disease,arthritis, deformities or orthopedic impairments, mental re-tardation, peptic ulcer disease, visual and hearing impair-ments, and overweight). In contrast, almost half of theHealthy People 2010 focus areas directly address chronic ill-ness and disability, and almost all of the focus areas can berelated to these issues in some manner. Moreover, the sectionon “Disability and Secondary Conditions” is devoted exclu-sively to issues most relevant to people with disabilities.

The definition of disability in Healthy People 2010 issomewhat different and more explicit than that used in theICF (WHO, 2001); it is stated as “the general term used torepresent the interactions between individuals with a healthcondition and barriers in their environment” (USDHHS,2000, p. 25). Moreover, people with disabilities are “identi-fied as having an activity limitation or who use assistance or

who perceive themselves as having a disability” (USDHHS,2000, p. 6–25).

This change in emphasis between the two documentswas noted in Healthy People 2010 (USDHHS, 2000), whichcited lack of parity between disabled and nondisabled popu-lations in terms of several selected objectives: leisure-timeactivity, use of community support programs, and receipt ofclinical preventive services. One such example was the find-ing that the percentage of people with disabilities who re-ported some type of leisure-time activity was the lowest ofany of the groups identified (including those older than 65years of age and low-income persons). On the positive side,the percentage of people with disabilities who reported noleisure-time physical activity actually declined from the


B R I D G I N G F I N A N C I A L G A P S

MANAGING CHRONIC ILLNESS TO IMPROVEHEALTH AND CONTROL COSTS

Rapaport, L. (2003, June 22). CalPERS seeks proofof payoff from prevention. The Valley Times, p. A5.

The California Public Employees’ Retirement System(CalPERS) is planning to make disease managementthe centerpiece of its health program beginning in 2004.In an effort to improve the health of its workers and re-duce insurance expenditures, all identified chronicallyill patients enrolled in the system will be tracked in aneffort to keep them from getting sicker. The two healthmaintenance organizations (HMOs) now contracted byCalPERS (Kaiser and Blue Shield) will be required toprovide programs for asthma, diabetes, cardiovasculardisease, and depression. Profit margins for those HMOswill now be directly tied to their ability to both treat andtrack those members enrolled in select disease manage-ment programs, with the added caveat that the datashow improvement in the health of those patients. Thebenefit to the two HMOs was that they were now thesole health care options available to the enrollees, asopposed to more than a dozen companies available justa few years ago. CalPERS is also planning to spend$12 million on a new data warehouse to track everydoctor visit, hospitalization, and prescription to deter-mine whether the new effort is providing real benefits.The question remains: Will disease management pro-vide cost savings to the system? The overriding goal ofimproved quality of life for the CalPERS members andcost control for the system are clearly at issue. The re-sults will undoubtedly provide a clearer path to manag-ing chronic illnesses in the coming years and willinfluence chronic disease management all over thecountry, not just in California.

1985 level of 35% to 29% in 1995, although it was still farshort of the 2000 target of 20%. Additional disparities notedfor people with disabilities included increased likelihood ofbeing overweight, adverse effects from stress, and reducedrates of preventive services (eg, tetanus boosters, Pap tests,breast examinations, and mammograms). Recognition thatthe health needs of disabled persons were not receivingneeded attention resulted in placement of high priority on im-provement of 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 states that “every person in every com-munity across the nation deserves equal access to compre-hensive, culturally competent, community-based health caresystems that are committed to serving the needs of the indi-vidual and promoting community health” (USDHHS, 2000,p. 16). The goal of Healthy People 2010 specific to disabledpersons is to “promote the health of people with disabilities,prevent secondary conditions, and eliminate disparities be-tween people with and without disabilities in the U. S. pop-

ulation” (USDHHS, 2000, p. 6-8). Thirteen individual ob-jectives have been selected to measure progress toward thisgoal (Table 34–2). What is most significant about thechanges in the Healthy People 2010 objectives specific todisabled persons is the emphasis on healthy life-years andimproved quality of life, similar to the recommendations byWHO (2002). Although the issues of function stressed in theICF (WHO, 2001) were not as explicit in Healthy People2010, the 13 objectives indicate a growing emphasis on aholistic approach that recognizes that life satisfaction is justas important to health and well-being as preventive services.It also indicates a growing realization that healthy life-yearsfor persons with disabilities equate to decreased health costsat local, state, and national levels, just as they do for personswithout disabilities.

CIVIL RIGHTS LEGISLATION

Policies such as Healthy People 2010 are important featuresof an overall plan to address the health of people with dis-abilities and chronic diseases in the United States. Althoughit has a great deal of influence on the direction and type ofprograms initiated, policy alone cannot assure individualswith disabilities that the needed services and accommoda-tions are or will be available. As has often been the case, anact of legislation is vital to ensure that every individual’srights are protected and that legal recourse is available if suchprotection is denied. The struggle for civil rights for disabledpersons in this country is still in its infancy, but it has begunto gain the level of attention that racial and gender equalityreceive. As is true for other issues of equality, legislation isonly the first of many steps that must be taken.

The Americans with Disabilities Act (ADA) wassigned into law in 1990 to protect the civil liberties of themany Americans living with disabilities (see Chapters 15and 29). This legislation was the result of a long and difficultstruggle. Individuals with disabilities and their advocatesmade their voices heard by repeatedly demanding an end toinferior treatment and lack of equal protection under the lawthat impeded their daily lives. The ADA set the standard fora number of subsequent laws that, together with pre-ADAlegislation, offer a broad spectrum of protections for disabledpersons. These additional laws are listed in Table 34–3 andcover a variety of issues, including telecommunications, ar-chitectural barriers, and voter registration.

The ADA essentially “prohibits discrimination on thebasis of disability in employment, state and local govern-ment, public accommodations, commercial facilities, trans-portation, and telecommunications [and] also applies to theUnited States Congress” (United States Department of Jus-tice [USDOJ], 2002, p. 3). For an individual to be protectedunder the ADA, he or she must have a disability or some typeof relationship or association with an individual who has adisability. The definition of a disabled person used in the ap-plication of the ADA is “a person who has a physical or men-


T A B L E 3 4 – 2

Healthy People 2010: Disability andSecondary Conditions—Objectives

• Include in the core of all relevant Healthy People 2010 surveil-lance instruments a standardized set of questions that identify“people with disabilities”

• Reduce the proportion of children and adolescents with disabili-ties who are reported to be sad, unhappy, or depressed

• Reduce the proportion of adults with disabilities who report feel-ings such as sadness, unhappiness, or depression that preventthem from being active

• Increase the proportion of adults with disabilities who participatein social activities

• Increase the proportion of adults with disabilities reporting suffi-cient emotional support

• Increase the proportion of adults with disabilities reporting satis-faction with life

• Reduce the number of people with disabilities in congregate carefacilities, consistent with permanency planning principles

• Eliminate disparities in employment rates between working-ageadults with and without disabilities

• Increase the proportion of children and youth with disabilities whospend at least 80% of their time in regular education programs

• Increase the proportion of health and wellness and treatment pro-grams and facilities that provide full access for people with dis-abilities

• Reduce the proportion of people with disabilities who report nothaving the assistive devices and technology needed

• Reduce the proportion of people with disabilities reporting barriersto participation in home, school, work, or community activities

• Increase the number of Tribes, States, and the District of Colum-bia that have public health surveillance and health promotion pro-grams for people with disabilities and caregivers

(From U. S. Department of Health and Human Services.[2000]. Healthy people 2010: Understanding and improvinghealth. Washington, DC: U.S. Government Printing Office.)

tal impairment that substantially limits one or more majorlife activities, a person who has a history or record of such animpairment, or a person who is perceived by others as hav-ing such an impairment” (USDOJ, 2002, p. 2). A listing ofthe specific impairments covered under the law is notably ab-sent, leaving open a broad range of interpretations and legalchallenges with respect to who is actually covered.

Although there is ongoing debate as to who is actuallyprotected by the ADA, there is an equal amount of confusionas to who is actually required to comply with the provisions ofthe act and what specific actions are necessary. The followingis a short summary of the ADA. All employers, including re-ligious organizations with 15 or more employees, are subjectto the act, as are all activities of state and local governments ir-respective of size. Before 1994, the act applied only to em-ployers with 25 or more employees. Public transportation,businesses that provide public accommodation, and telecom-munications entities are all required to provide access for in-dividuals with disabilities. It is important to note that the ADAdoes not override federal and state health and safety laws.However, successful legal challenges to those statutes havebeen made when they were clearly outdated or when it couldbe argued that the public safety was not actually at risk in aspecific situation. There are considerable gray areas within theADA, leaving open the prospect of challenges by those whoare subject to the law and those who are protected by it.

Individuals who believe that their legal rights under theADA have been violated may seek remedy by filing a law-suit or submitting a complaint to one of four federal offices,depending on the specific type of alleged violation: (1) the U. S. Department of Justice—Civil Rights Division, (2) anyU. S. Equal Employment Opportunity Commission field of-fice, (3) the Office of Civil Rights—Federal Transit Admin-istration, or (4) the Federal Communications Commission.The process for filing a complaint is not a simple task, andmany seek the assistance of attorneys, legal aid societies, orvarious private organizations, some of which are discussedlater in this chapter (see What Do You Think?).


W H A T D O Y O U T H I N K ?

The responsibility of the U. S. Department of Justice,Office of Civil Rights (OCR), is to investigate com-plaints of alleged violations of the Americans withDisabilities Act (ADA). An example of one of thosecomplaints involved a 22-year-old Connecticutwoman with cerebral palsy. She had been placed in anursing home because of changes in her living situa-tion and health care status and wanted to move backinto the community. The OCR intervened to ensurethat the woman secured appropriate housing and thatcounseling and intensive case management serviceswere in place when she moved back into the commu-nity. Without the protection afforded under the ADA,the outcome could have been much different.

(From U. S. Department of Health and Human Ser-vices. [2003, May]. Delivering on the promise:OCR’s compliance activities promote community integration. Available at: http://www.hhs.gov/ocr/comlianceactiv.html)

T A B L E 3 4 – 3

Disability Rights Laws

Law Summary Contact

Telecommunications Equipment and Federal CommunicationsAct of 1996 services are Commission (FCC)

accessibleFair Housing Act Prohibits housing U. S. Department of (amended 1988) discrimination Housing and Urban

Development (HUD)Air Carrier Access Prohibits U. S. Department of Act discrimination in Transportation

air transportation by domestic and foreign carriers

Voting Accessibility Requires polling U. S. Department of for the Elderly and places to be Justice—Civil Rights Handicapped Act physically Divisionof 1984 accessible for

federal electionsNational Voter “Motor Voter Act”— U. S. Department of Registration Act makes it easier Justice—Civil Rights of 1993 to vote by Division

increasing low registration rates by minorities and persons with disabilities

Individuals with Make available free U. S. Department of Disabilities public education in Education—Office of Education Act the least restrictive Special Education

environment Programsfor all children with disabilities

Rehabilitation Act Prohibits Agency’s Equal discrimination in Employment all federal Opportunity Officeprograms or U. S. Department of programs receiving Labor—Office of federal financial Federal Contract assistance Compliance Programs

U. S. Department of Justice

Architectural Barriers Buildings U. S. Architectural and Act constructed or Transportation Barriers

altered with federal Compliance Boardfunds must meet federal accessibility standards

(From U. S. Department of Justice. [2002]. A guide to dis-ability rights laws. Available at: http://www.usdoj.gov/crt.ada.cguide.htm)

In a report on the enforcement history of the ADA betweenits inception and 1999, the National Council on Disability(NCD) noted that many of the federal agencies charged withprotecting the civil rights of disabled persons suffered from in-sufficient funding and lack of a coherent and unifying nationalstrategy (NCD, 2000). NCD recommendations included clari-fication of specific elements that provide a basis for evaluatingagency performance and thereby serve to improve the full ex-pression of the law as it was intended. These 11 elements or cri-teria are (1) proactive and reactive strategies, (2) communica-tion with consumers and complainants, (3) policy andsubregulatory guidance, (4) enforcement actions, (5) strategiclitigation, (6) timely resolution of complaints, (7) competentand credible investigative processes, (8) technical assistancefor protected persons and covered entities, (9) adequate agencyresources, (10) interagency collaboration and coordination, and(11) outreach and consultation with the community.

It is important to those with disabilities and the profes-sionals that serve them that a structure is in place to provideprotection under the law, but this does not preclude discrim-ination, nor does the existence of such a structure suggest thatimmediate remedies will be available. Laws aside, the mostdifficult aspect of change comes when attempts are made toalter the perceptions and misunderstandings of others aboutpeople with disabilities. Voices from the Community offersone such example.

ORGANIZATIONS SERVING THENEEDS OF THE DISABLED ANDCHRONICALLY ILL

Although the impact of civil rights legislation cannot be un-derestimated, it did not come about without demands forchange from the chorus of voices of all those who deal on adaily basis with the issue of disability (the individuals them-selves, their families, coworkers, employers, and advocates).Without the hard work of those individuals and groups, it isunlikely that the efforts envisioned and accomplished by leg-islation would have occurred. Much of the credit for the leg-islative focus belongs to advocacy groups. The followingsection provides an overview of some of the groups that ad-vocate for the disabled and chronically ill and their families.In serving those specific populations, they offer others an op-portunity to learn more about the lives and struggles of dis-abled persons. Each of the organizations listed offers a widerange of information, some of which can be accessed via theInternet. For community health nurses, these organizationsprovide a starting point for exploring specific topics pertinentto practice. They also can be a source of valuable informa-tion for clients and families to access on their own. Familiesthat cannot afford Internet service or computers can use themat public libraries, most of which now offer this service.Many Internet sites are not reliable or accurate, so it is im-portant for the nurse to prescreen any specific sites that arerecommended to clients and their families.

Government

The National Council on Disability (NCD) is an independentfederal agency that is tasked with making recommendationsto the President and to Congress about issues that face Amer-icans with disabilities. The NCD has 15 Presidential ap-pointees (all confirmed by the U. S. Senate), whose charge isto promote “policies, programs, practices, and proceduresthat guarantee equal opportunity for all individuals with dis-abilities, regardless of the nature or severity of the disability,and to empower individuals with disabilities to achieve eco-nomic self-sufficiency, independent living, and inclusion andintegration into all aspects of society” (NCD, 2003, p. 1). Inits 1986 report, Toward Independence, the NCD proposedthat Congress should enact a civil rights law for people withdisabilities; the result was the 1990 ADA.

Private

Many private organizations—local, national, and interna-tional—deal with a variety of disabilities and chronic dis-eases. Many of the better-known organizations such as theAmerican Heart Association and the American Cancer As-sociation are discussed in other chapters of this book andtherefore are not covered here. Instead, examples of groupsthat deal most directly with disability and chronic illness aredescribed. The reader is encouraged to search the Internet orother print resources for additional entities that deal with spe-cific disabilities or chronic illnesses.

The National Association of the Deaf (NAD), head-quartered in Washington, D. C., is a private, nonprofit organi-zation that was established in 1880. As the oldest U. S. orga-nization serving this population, it has the stated purpose of


V O I C E S F R O M T H E C O M M U N I T Y

I was always such an active and healthy person, sowhen I was diagnosed with multiple sclerosis it hitme like a ton of bricks. Here I was with two smallchildren and I was only 30 years old; it just wasn’tfair. Some days are good and some days are just aw-ful. I finally broke down and applied for one of thosedisabled parking stickers. The doctor had to approveit, and he said it was a good thing to help me save myenergy for the important things, like taking care ofmy family. I hated to use it, but I was just getting sotired. What is so awful are the looks on people’sfaces when I park in the special areas near the door. Iknow I don’t look like I’m sick. I just hate thoselooks—I can hear them saying under their breath,“She can’t be sick . . . I’ll bet that sticker is for a fam-ily member and she’s just abusing it—how lazy!” If Iwasn’t so tired I’d park in the regular parking places.

Pat N., Tampa, Florida

“safeguarding the accessibility and civil rights of 28 milliondeaf and hard-of-hearing Americans in education, employ-ment, health care, and telecommunications” (NAD, 2003, p. 1). Specific programs and activities that NAD is involvedwith include advocacy, captioned media, certification ofAmerican Sign Language (ASL) professionals and inter-preters, legal assistance, and policy development and research(NAD, 2003). Two goals of the 1993 NAD Position Paper onASL and Bilingual Education (NAD, 1993) are the officialrecognition of ASL as an indigenous language and the imple-mentation of bilingual education (ASL and English) for deafchildren in the nation’s schools. ASL uses “handshapes” tocommunicate ideas and concepts; it is used primarily in Amer-ica and Canada by the deaf community (Grayson, 2003). Dis-play 34–2 offers a brief summary of sign languages.

The National Organization on Disability (NOD), head-quartered in Washington, D.C., has as its mission statement“to expand the participation and contribution of America’s54 million men, women, and children with disabilities in allaspects of life” (NOD, 2002a, p.1). An important contribu-tion of NOD is the 2000 NOD/Harris Survey of Americanswith Disabilities, which sought to quantify the gaps betweenpeople with and without disabilities in terms of employment,income, education, health care, access to transportation, en-tertainment or going out, socializing, attending religious ser-vices, political participation/voter registration, life satisfac-tion, and trends (NOD, 2002b). One of the most notablefindings of the study was that improvements in education andemployment have been made for people with disabilitiesover that last decade (1990–2000). Nonetheless, people withdisabilities are more likely than nondisabled persons to have

low incomes. The NOD Web site connects visitors to a richvariety of sources on community involvement, economic/employment topics, and access issues (http://www.nod.org).

The American Council of the Blind (ACB) was foundedin 1961 and states as its purpose, “to improve the well-beingof all blind and visually impaired people” (ACB, 2003, p.1).Services advertised by the organization include informationand referral, scholarship assistance, public education, and in-dustry consultation, as well as governmental monitoring,consultation, and advocacy. Some of the major issues that arecurrently being pursued by the organization include im-proved education and rehabilitation for the blind and in-creased production and use of reading materials for the blindand visually impaired.

Guide Dogs for the Blind is a nonprofit charitable orga-nization established to train and make available guide dogsfor the visually impaired (Guide Dogs for the Blind, 2003).The dogs and services are free, and the organization relies ondonations. It currently has two training sites, one in Califor-nia and one in Oregon, with puppy raisers located through-out the Western states. The organization can be reachedthrough its Web site at http://www.guidedogs.com.

Another organization dealing with issues affecting theblind and visually impaired is the National Federation of theBlind (NFB). Founded in 1940, it seeks to help “blind per-sons achieve self-confidence and self-respect and to act as avehicle for collective self-expression by the blind” (NFB,2003a, p.1). Citing the need for assistance to the more than1.1 million people in the United States who are blind, the or-ganization fulfills its mission by providing public education,information and referral, and support for increased availabil-ity of materials in Braille (Display 34–3).

The oldest organization devoted to eliminating barriersfor the blind and visually impaired is the American Founda-tion for the Blind (AFB), which was founded in 1921. TheAFB advocates for the visually impaired through increased


D I S P L A Y 3 4 – 3

What is Braille?

Braille takes its name from Louise Braille, an 18-year-old blind Frenchman who created a system of raiseddots for reading and writing by modifying a systemused on board sailing ships for night reading. Personsexperienced in Braille can read at speeds of 200 to400 words per minute, comparable to print readers.Braille consists of arrangements of dots to form sym-bols. The text can be written either by hand with aslate and stylus, with a Braille writing machine, or withthe use of specialized computer software and a Brailleembossing device attached to the printer.

(From National Federation of the Blind. [2003b]. What isBraille and what does it mean to the blind? Available at:http://www.nfb.org/books/book1/ifbnd03.htm )

D I S P L A Y 3 4 – 2

Sign Languages in Brief

• Sign languages are not universal• Sign language is the use of “handshapes” and ges-

tures 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 Amer-

ica and Canada and is the natural language of thedeaf community

• International Sign Language (Gestuno) is com-posed of vocabulary signs from various sign lan-guages for use at international events or meetingsto aid communication

• Systems of Manually Coded English (ie, SignedEnglish, Signing Exact English) are not natural lan-guages but systems designed to represent thetranslation of spoken language word for word

(From Grayson, G. [2003]. Talking with your hands, listeningwith your eyes. A complete photographic guide to American SignLanguage. Garden City Park, NY: Square One Publishers.)

funding at the federal and state levels in areas such as reha-bilitation research for older, visually impaired persons; im-proved literacy for the visually impaired, including use ofBraille and assistive technology; improved employment op-portunities; and increased accessibility of technology. In ad-dition, AFB houses the Helen Keller Archives, which con-tain her correspondence, photographs, and various personalitems and documents (AFB, 2002).

The American Obesity Association (AOA) sees as itsgoal, “to address obesity as a public health concern and toremove the barriers to treatment through vigorous advo-cacy and education” (AOA, 2002). The organization ad-dresses such issues as the need for attention to the impactof obesity on death and disability and for increased re-search, improved insurance coverage, and elimination ofdiscrimination and mistreatment of people with obesity.The organization’s Web site (http://www.obesity.org) of-fers informational literature covering topics that range fromthe global problem of obesity to Social Security benefits forobesity-related disability.

HEALTH PROMOTION ANDPREVENTION NEEDS OF THEDISABLED AND CHRONICALLYILL

Misconceptions ImpedeImprovement

Earlier, the influence of Healthy People 2010 as it relates topeople with disabilities was discussed. One of the most in-fluential aspects of the document is its emphasis on a changein thinking within the health care community about thehealth promotion needs of people with disabilities. This shiftis needed because the lack of health promotion and diseaseprevention activities for this population leads to an increasein the number and extent of secondary conditions, definedas “medical, social, emotional, mental, family, or communityproblems that a person with a disabling condition likely ex-periences” (USDHHS, 2000, p. 6–25). Approaching thehealth needs of disabled persons from the traditional stand-point of asking what medical, rehabilitative, or long-termcare is needed has failed to reduce illness or improve theoverall well-being of the disabled or chronically ill. More-over, a number of misconceptions have resulted that impedeprogress in this area: (1) that all people with disabilities havepoor health, (2) that public health activities need to focusonly on preventing disability, (3) that there is no need for aclear definition of “disability” or “people with disabilities” inpublic health practice, and (4) that environment does not playa significant role in the disability process. Increased nationalattention to the needs of the disabled (those needs specific todisabled persons as well as needs that are universal to all)should greatly improve the outlook. This change of focus isclearly evident in the definition of health promotion used inHealthy People 2010: “efforts to create healthy lifestyles and

a healthy environment to prevent medical and other sec-ondary conditions, such as teaching people how to addresstheir health care needs and increasing opportunities to par-ticipate in usual life activities” (USDHHS, 2000, p. 6–25).

Missed Opportunities by Health CareProviders or Missed Opportunities toAffect Quality of Life

In this age of rapid growth in technology, it is easy to forgetthat clean water is a far more important commodity than hav-ing the latest prescription drug or surgical procedure. All ofus, whether healthy, disabled, or chronically ill, require somebasic elements to maintain health. Those elements are thesame all over the world and include clean air and water, asafe place to live, sunshine, exercise, nutritious food, social-ization, and the opportunity to be successful in life’s pursuits.As self-evident as these health promoting elements mayseem, for the millions of persons who deal with disability,chronic disease, or both, such basic needs seem too often totake second place to other issues. It is equally problematicthat preventive measures, most notably at the primary andsecondary levels, are often nonexistent or lacking.

The issue of missed opportunities in health promotionand prevention is depicted in Figure 34–2. The focus of thehealth care delivery system is increasingly skewed towardsecondary and tertiary prevention efforts, and limited em-phasis is placed on the health promotion and primary pre-vention needs of the population. Although this is a concernfor all persons, it is of particular importance for persons withdisabilities and chronic illnesses, because they are morelikely to have these needs ignored altogether. As Figure 34–2shows, an entire area of issues may be addressed with a ba-sically healthy person but not with a disabled or chronicallyill individual. There may be areas of secondary and tertiaryprevention unique to persons with disabilities or chronic ill-nesses that are completely ignored. It is the nonreceipt of


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F I G U R E 3 4 – 2 . Difference in client focus be-tween individuals with and without a chronic illness or disability.

health promoting or preventive education or actions vital tothe health and well-being of those with disabilities or chronicillnesses that is of most concern. For example, issues such assexuality are often not explored with the disabled or chroni-cally ill. This skewed view of the lifestyles, behaviors, andneeds of the disabled as “different” from those of the “able-bodied” is a clear example of lack of understanding by healthprofessionals and the public alike.

It is likely that disability or chronic illness serves as theinitial reason for an individual’s encounter with the healthcare community, including the community health nurse. Asa result, the disability or illness often drives the selection ofprevention efforts, to the possible exclusion of other, equallyimportant health issues. For example, for an individual witha primary diagnosis of type 1 diabetes, secondary preventionefforts often center on that disease (eg, screening for diabeticretinopathy). The need to refer the client for a Pap test or abaseline mammogram may be overlooked. Likewise, thetreatment plan may include a consultation with a dietitian but

fail to address the basic needs for leisure-time activities, reg-ular physical activity, a varied and interesting diet, fresh airand sunshine, and socialization—all of which may help pre-vent the development of depression, a common result ofchronic illness. Display 34–4 offers several examples ofmissed opportunities in the areas of primary and secondaryprevention. 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.

Health Care Disparities andDiscrimination

It is a growing concern to those who are disabled, and to theirfamilies and advocates, that the type and quality of thehealth-related services, referrals, and care that they receivemay not be appropriate to their circumstances. This results inincreased illness and disability and potentially decreasedquality or length of life.


D I S P L A Y 3 4 – 4

Missed Opportunities

Example 1A 60-year-old woman, blind since birth, self-sufficientand active all of her life, has developed severe arthritis.She encounters a health care system that far too oftenfocuses on her “disabilities” and not her “abilities.” Thefocus is placed squarely on her tertiary health promotionneeds, often at the expense of health-promoting orlifestyle-enhancing needs. The result is a failure to rec-ognize that the “disability” of arthritis is likely no less andno more an issue for her than for a sighted person. Shereceives the same medication therapy as a sighted per-son but may not be offered a physical therapy programdue to her disability. Her need for physical therapy is noless important, but locating an appropriate, safe, andeasily accessible program requires some additional workon the part of her provider. At issue is that options poten-tially discussed with a sighted person are more apt to beomitted completely, which may negatively affect theclient’s overall health and well-being.

Example 2A 20-year-old man with learning disabilities, who is em-ployed at a local factory, receives a regularly scheduledphysical examination with a new provider. He lives in acongregate care facility, which is an out-of-home facilitythat provides housing for people with disabilities in whichrotating staff members provide care for 16 or more adultsor any number of children/youth younger than 21 years ofage. It excludes foster care, adoptive homes, residentialschools, correctional facilities, and nursing facilities (USDHHS, 2000). The major finding of the examination isthat he is due for a tetanus booster and should also beginthe series for hepatitis A, because he lives in a high-risk

area of the western United States. He takes the referralslip and leaves the office. One year later, at his regularlyscheduled visit, it becomes clear that he never receivedhis immunizations. Apparently, he didn’t know what hewas supposed to do with the paper, because he has diffi-culty reading, and he had no idea where to go to get his“shots.” The primary prevention elements were provided,but clearly not in a manner appropriate for this individual.With additional explanation and follow-up, perhaps theoutcome would have been quite different.

Example 3A 34-year-old woman who has been severely obesesince the birth of her last child (4 years ago) has not hada gynecologic examination since that birth. She is awareof the need to have regular examinations, yet she cannotbring herself to make an appointment. The reason is thatshe knows she will have to be weighed, and this terrifiesher, especially because it is done in an open area whereothers can see. She finally gets the courage to call for anappointment and tells the clerk that she does not want tobe weighed. The clerk’s response is less than helpfuland she is essentially told that it is “policy.” She makesthe appointment but does not keep it. This situation couldhave been handled in a compassionate manner, recog-nizing the painful experience that weighing is for manyindividuals and suggesting alternatives, one of whichcould have been simply to bypass the scales until afterthe interview and examination. At that point, the womanmay have been more amenable to the measurement anda more discrete area could have been offered. In thiscase, the opportunities to provide primary, secondary,and tertiary prevention were lost.

The issue of health care access was one of a number ofelements explored in a study involving 932 independentlyliving Massachusetts adults with a major disability (Wilberet al., 2002). The purpose of the study was to determinewhether factors such as having a consistent primary careprovider, access to health promotion or disease preventionprograms, and accessible transportation were related to thenumber and severity of secondary conditions experienced.The findings suggested that the more independent the indi-vidual and the fewer obstacles faced, the fewer secondaryconditions were reported. The study used the definition ofsecondary conditions in Healthy People 2010; the most no-table findings were the high prevalence rates of fatigue, de-pression, spasms, and chronic pain.

Additional disparities may exist in services received bythose with chronic illness and disabilities. Racial and ethnicdifferences in immunization rates were found in a study an-alyzing data from the National Health Interview Survey ofalmost 2000 individuals with diabetes (Egede & Zheng,2003). Even after controlling for access, health care cover-age, and socioeconomic status, the rates of influenza andpneumococcal immunization were lower for certainracial/ethnic groups, primarily Blacks. What is not knownfrom these results is whether the depressed immunizationrates resulted from client acceptance issues, from differentialprovider recommendations, or from some combination ofthese 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 withhealth care among chronically ill African-Americans. In thisstudy, low-income-status individuals were less satisfied withboth the quality and the quantity of their care than were mid-dle-income respondents. The potential impact of low satis-faction for selected groups is of real concern in addressingthe ongoing needs of those individuals. Although neitherstudy was confirmatory, it is nevertheless an issue that needsto be explored further.

It is discriminatory practice when an individual receivesunequal, inappropriate, or limited services compared withthose offered to others. Although the difference in treatmentis often due to lack of understanding of the needs of disabledpersons, it is nonetheless discriminatory. Such bias may notbe intentional, but it can dramatically affect the health ofclients and must be changed.

The good news is that the incidence of unequal and in-appropriate practices can be reduced with education andtraining of health care providers, agency staff, and insurancecarriers. A crucial aspect of community health practice is toensure that those individuals with disabilities or chronic ill-nesses are afforded the best possible care, treatment options,and opportunities to improve their health—the same optionsthat are provided for nondisabled persons and those who donot suffer from chronic illness.

Health promotion and primary, secondary, and tertiaryprevention 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, yetthey also require the same attention to health and well-beingas the rest of the population. Community health nurses are ina prime position to advocate needed changes for those withdisabilities and chronic illnesses. Such changes can includeincreased attention to health promotion and disease preven-tion needs, accessible and appropriate delivery of those ser-vices, and specialized treatment plans that incorporate thelatest knowledge of a specific illness or disability.

FAMILIES WITH A DISABLED ORCHRONICALLY ILL MEMBER

The Family’s Role in Advocacy

Families that have a member with a chronic illness or dis-ability face many challenges. They are required to navigatea health care system that they know little about and withwhich they often feel at odds. They serve as advocates fortheir member in need (whether child, spouse, or parent) andoften feel tired and frustrated from their efforts, especially ifthey have been less than successful in meeting their goals.Many are forced to ask for or demand assistance from healthcare agencies, social services, or transportation sources toachieve the level of care needed by the family member. Manyare required to open their home to others (eg, communityhealth nurses, social workers) to access the services. Fami-lies may have little understanding of what services they areentitled to because of language barriers, difficult agency poli-cies, or disjointed service delivery.

The community health nurse is usually not the firsthealth care professional that the family encounters. Theymay already have been through a lengthy struggle to receiveassistance. In these circumstances, the nurse often is con-fronted by a frustrated family that distrusts yet another “pro-fessional.” The nurse must gain the trust and confidence ofthe family by practicing consistency, following through withpromised actions, and always being truthful. Not all prob-lems that the family faces can be remedied, and even forproblems that do have solutions, time and effort may beneeded to obtain the desired result.

The Impact on Families

A literature review of the needs of parents with chronicallyill children reported a number of common themes in the stud-ies surveyed: (1) the need for normalcy and certainty, (2) theneed for information, and (3) the need for partnership(Fisher, 2001). Although these needs were associated withthe presence of a chronically ill child in the family, the sameneeds are likely to occur in other families. These are certainlyareas that can be addressed by the community health nurse ina practical way.

One major obstacle for families with a disabled orchronically ill member may be obtaining needed assistive


devices and technology. These are defined in Healthy Peo-ple 2010 as “any item, piece of equipment, or product sys-tem, whether acquired commercially, modified, or cus-tomized, that is used to increase, maintain, or improve thefunctional capabilities of individuals with disabilities” (US-DHHS, 2000, p. 6-25). With constant changes in availableequipment, financing, and technology, it is little wonder thatfamilies struggle to find the best alternatives. Just because thetechnology exists does not mean that it can be obtained. Of-ten the insurance carrier, whether private or governmental,sets limits on which products can be obtained or whichbrands are acceptable. The overriding issue of financing is nosmall hurdle. It is often left up to the family to learn aboutoptions and legal rights through a process of trial and error.

Intervention by the community health nurse can greatly re-duce the burden on the family. With so many product linesavailable on the Internet, the nurse can assist families in thisarea, especially those without access to or understanding ofcomputer technology. It is equally helpful for the nurse to in-tervene with insurance providers if coverage of equipment isnot easily obtained or to find sources of funding for theequipment from private agencies if possible. Referring fam-ilies to community groups or organizations that provide spe-cific assistance can be very helpful. Other families who sharesimilar struggles can provide a vital link to needed servicesand can be contacted through self-help groups or othersources. This is where the community health nurse can pro-vide expertise on available community resources.


U S I N G T H E N U R S I N G P R O C E S S

ASSESSMENT

Anna Lopez is a mother of three children aged 2 to 9years old. The eldest, Ernesto, was diagnosed with severeDown syndrome at birth. He is confined to a wheelchair,requires total care, and remains at home with his motherand younger siblings, who are not yet in school. Anna’shusband works long hours as a computer repairman for alarge company. They have health insurance, but it doesnot cover additional expenses, such as day care forErnesto. The family has done very well in providing forErnesto’s needs, and they receive periodic visits fromyou, the community health nurse, to evaluate his condi-tion and check on the feeding tube used for his nourish-ment. Physically, Ernesto is stable, but you notice thatAnna has been increasingly withdrawn at the visits,rarely offering information, but responding to questionsappropriately. She seems less engaged with her otherchildren as well, only occasionally smiling at them.

NURSING DIAGNOSES

1. At risk for depression related to ongoing caregiverdemands and lack of respite care

2. At risk for altered health status due to limited focuson self-care needs

PLAN/IMPLEMENTATION

Diagnosis 1. The community health nurse will discusswith the client the need for a thorough physical assess-ment, including an evaluation for depression. The com-munity health nurse will contact the insurance providerto discuss day care/respite options for Ernesto. If un-available, local community organizations will be con-tacted for appropriate referrals. In addition, the need for

more frequent visits to the family will be discussed withthe insurance carrier to address the needs of the motheras caregiver.

Diagnosis 2. The community health nurse will discusswith the client her concerns about her overall physical andmental health and discuss some self-care options that mayimprove her well-being: improved nutrition, physical ac-tivity, leisure time options, and adjustment of familyschedule to accommodate more free time for self-care.

EVALUATION

The client was at first very reticent to make an appoint-ment for an evaluation, but after thinking it over for aweek and discussing it with her husband, she did so. Herhusband was relieved that she had suggested the ap-pointment, because he was growing increasingly con-cerned over her withdrawal but did not know how tobring up the subject. The family physician referred Annato a psychologist for evaluation of the depression. Theinsurance carrier agreed to increase home visits on ashort-term basis but did not have a respite care optionavailable for Ernesto. Fortunately, a local faith-basedcommunity group was able to provide limited assistanceto the family. They identified several members who hadraised children with similar disabilities and were willingto stay with Ernesto and the other children once a weekfor 4 hours. This allowed Anna some free time to makeappointments with her psychologist, shop, or visitfriends. After several months, Anna has begun to smilemore and seems much more relaxed at the home visits.The children are all doing fine, and the respite care is ex-pected to continue for at least the next 6 months. Theneed for ongoing attention to her own self-care needs isemphasized with Anna by the community health nurse.

Respite care is another area of great importance for fam-ilies of the disabled and the chronically ill. It can be emo-tionally draining to meet the daily needs of a member whocannot perform self-care. This often leads to caregiver fa-tigue and increased stress. It is also important to recognizethe effect of the situation on non-caregivers in the family,particularly nondisabled siblings of a disabled child. With fo-cus placed on the needs of one member, children may feelthat their own needs are not as important. This can lead to be-havioral and health-related problems. Respite care offerssome needed relief to the family and allows for uninterruptedattention to the nondisabled children. This service can occurwithin the home or at an outside facility. Respite care may beprovided by a private organization at little or no cost to thefamily, or it may be quite expensive and require financing bythe insurance company or by the family itself. Whatever thesource, some type of respite care is often vital to the family’shealth and should be a priority in the overall treatment planof the family (see Using the Nursing Process).

With the enactment of the 1996 welfare reform legisla-tion (the Personal Responsibility and Work OpportunityReconciliation Act), a number of significant changes wereimplemented that potentially affect families with a chroni-cally ill child, especially those living in poverty. Changes in-cluded the stipulation of a 5-year lifetime limit on receipt ofbenefits, institution of work requirements, and elimination ofentitlement to cash benefits. The impact of these changes isof growing concern within the public health community.Smith, Wise, and Wampler (2002) explored this issue in astudy of knowledge of welfare reform among families with achronically ill child. They found that respondents often hadincomplete knowledge of work requirements, even if theywere entitled to exemptions because their children receivedSupplemental Security Income. In those cases, 37% of the re-spondents were unaware that they qualified for work exemp-tions, and 70% had not applied for the exemptions. This in-dicates that eligible families might not be receiving theexemptions to which they are entitled, adding additional andunnecessary burdens to families already at risk.

Another study explored the relationship between welfarestatus, health insurance status, and the health and medical carereceived by children with asthma (Wood et al., 2002). Themost significant findings were (1) children of parents who hadbeen denied Temporary Assistance for Needy Families(TANF) experienced more severe asthma symptoms and hadmore acute care visits than children in families that did not ac-cess the welfare system, (2) children of recent TANF appli-cants were more likely to be uninsured or transiently insuredthan those who had not applied, and (3) recent TANF appli-cants had the poorest mental health scores. The significanceof this study is that it demonstrated the high-risk status ofthose families with a chronically ill child and the need to pro-vide access to health insurance and health services.

Even for families that are ineligible for public assistance,the issue of employment is generally of great significance.Employment options may be quite limited when a family has

a member with special needs. The family may have to remainin a particular location to access needed health and social ser-vices, reducing the possibility of increased earning potentialat a different location or in another field of employment. Theworking family members may choose less favorable employ-ment options because the position is convenient or has moreflexible hours. For instance, a person may take a part-time po-sition at a local convenience store that does not pay particu-larly well in preference to a higher-paying, full-time factoryposition because the store is close to home and allows for fre-quent adjustments in schedule.

Having a chronically ill family member often means thatworking individuals must take time off from work. Althoughsome legal protections are provided under the Family andMedical Leave Act of 1993 (see Chapter 29), the Act doesnot apply in all situations. More importantly, it allows onlyfor time off; it does not mandate payment during those peri-ods. The choice becomes an issue of taking unpaid time offor continuing to work and dealing with the needs of the fam-ily member as best one can. Some individuals choose to workpart-time or not to work at all so that they can care for fam-ily members. At a time when many families have two earn-ers to help meet financial commitments, these families mayhave to rely on only one income. Limitations in income areparticularly difficult when one considers the myriad needs ofthe disabled and chronically ill, many of which may not becovered by insurance.

Caregiver health needs and mental health status are yetanother area of concern for families who must provide for adisabled or chronically ill member. One of the largest longi-tudinal studies in the United States, the Nurses Health Study,provided the data for an investigation of the impact of infor-mal caregiving on the mental health status of caregivers(Cannuscio et al., 2002). Using data collected over a 4-yearperiod (1992–1996), the study found that women who pro-vided 36 or more hours per week of care for a disabled spousewere six times more likely than noncaregivers to report de-pressive or anxious symptoms. The frequency of symptomswas elevated but less dramatic if the women cared for a dis-abled or ill parent as opposed to a spouse. The findings sup-port the necessity of attention to the needs of caregivers, themajority of whom are women. Poor health outcomes, bothphysical and mental, are of growing concern as the popula-tion ages and the need for family caregiving rises. Recogniz-ing that caregivers within a family are at increased risk forpoor health outcomes, the community health nurse must se-lect appropriate interventions to address the health needs ofthe other family members.

Families of individuals with a disability or chronic illnessare at increased risk for a number of negative consequences.Although families do not all have the same level of risk or dis-ruption, the community health nurse should recognize the po-tential impact of the dependent member’s needs on the entirefamily. Families may suffer from financial difficulties, poorphysical or mental health, and a variety of other challenges.They are often ill prepared to deal with the complicated sys-


tems that must be accessed to obtain needed care. The com-munity health nurse is in an optimal position to interpret thosesystems to the families and to advocate for the needed care,services, and equipment. The nurse must view the familyholistically, recognizing additional needs that may develop asa result of the situation they currently face.

THE ROLE OF THE COMMUNITYHEALTH NURSE

This chapter has discussed a number of areas in which thecommunity health nurse plays a key role. It is important toreview those roles in the context of the individual, the fam-ily, and the community as prime areas for nursing interven-tion. Chapter 3 first examined the broad spectrum of rolesthat the professional nurse takes on within the community. Itis helpful to review those roles and think about their applica-tion to disabled and chronically ill clients, their families, andthe communities in which they live.

Table 34–4 provides a grid on which to record specificexamples of the roles that community health nurses assumein relation to disabilities and chronic illnesses. Take note ofeach role that you participate in or observe while completingyour clinical experience. If you cannot find examples of thevarious roles at each level, perhaps you can interview a com-munity health nurse during your clinical experience and findexamples of how he or she performs activities in each of

those roles. You will probably find that, while addressing asingle issue with a client, the community health nurse servesin 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 assumeswith respect to a 55-year-old female client who uses a wheel-chair. The client has difficulty obtaining a gynecologic ex-amination because of the lack of accessible examination ta-bles at the local clinic; as a result, she has not had anexamination for more than 20 years. Recognizing the needfor a complete examination, the community health nursearranges with the clinic to find appropriate alternatives thatwill aid the client in receiving the needed examination, pos-sibly by ensuring that additional personnel are provided (Ad-vocate Role—Individual Level).

Because this solution is temporary and less than optimal,the nurse contacts a number of clinics in neighboring com-munities and finds one that has appropriate equipment forpeople who have difficulty transferring to a standard exami-nation table. Unfortunately, this clinic is 1 hour away. Thenurse then contacts a number of other community healthnurses and discovers that they also have a significant numberof women clients with this problem who have not received agynecologic examination in many years (Research Role—Community Level).

Through a coordinated effort with a local transportationcompany and the clinic, the nurse is able to arrange a twice-yearly gynecologic screening program for the women in the


T A B L E 3 4 – 4

Roles of the Community Health Nurse

Role Individual Family Community

Clinician

Educator

Advocate

Manager

Collaborator

Leaders

Researcher

community who require special accommodations (Advocateand Coordinator Roles—Community Level). Informationsheets that discuss the need for annual gynecologic exami-nations and advertise the program are distributed to area pub-lic health nurses, employers, and health clinics (EducatorRole—Community Level). Data collection on examinationsprovided over the next few years shows a 65% increase in thenumber of women with special needs who have received agynecologic examination within the past year (ResearchRole—Community Level).

This is not an uncommon scenario in the practice ofcommunity health nursing. Often, the needs of an individualopen the door to areas of concern for many in a communityand provide a basis for intervention that can benefit a largerpopulation.

Like nursing practice in general, the role of the commu-nity health nurse with respect to disabilities and chronic ill-ness requires broad and holistic practice. The complexity ofissues surrounding these conditions requires creativity,tenacity, honesty, and, most of all, knowledge. Communityhealth nurses who are informed about the issues that affectthe disabled and chronically ill at local, state, and nationallevels are prepared to offer assistance to their clients and totheir 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, theextent to which the health and well-being of those affected isimproved must be the ultimate goal. Community health nurs-ing is in a prime position to initiate and support efforts to im-prove the health status of those populations. We can eitherleave the issues to other professionals or use our expertiseand long history of caring for those less fortunate to makemajor and lasting changes. It is up to us.

SUMMARY

The issue of disability and chronic illness is of growing im-portance in community health, both nationally and interna-tionally. Through the efforts of WHO, the international com-munity has been challenged to provide increased attention tohealth promotion and disease prevention. Even in less devel-oped countries, behavioral patterns linked to excesses in con-sumption (overweight and tobacco/alcohol use) have an im-pact on the quality and quantity of healthy years of life. TheICF provides a universal classification system that standard-izes language and takes into account the biopsychosocialrealms in health assessment and well-being of disabled per-sons. Along with the World Health Report 2002, this docu-ment now places the emphasis squarely on prevention of dis-ease and disability. This means, of course, that the healthpromotion and disease prevention needs of the disabled andchronically ill must be given the same emphasis as the needsof those who are not disabled or ill.

The aging of the U. S. population and the rise inlifestyle-related illnesses such as diabetes and obesity areoften linked with increasing rates of disability. Preventionof disability and disease is emphasized in Healthy People2010, which serves as a wake-up call to Americans aboutthe need to give serious attention to health promoting anddisease prevention activities. What is unique about this cur-rent edition of Healthy People is the emphasis placed onhealth promotion and disease prevention needs of thosewith disabilities and chronic illness. It is no longer accept-able that these individuals be treated solely for tertiaryhealth needs. Research has shown that when health pro-moting (lifestyle) issues are addressed with these clients,the rates of secondary conditions are reduced, includingmedical, social, emotional, mental, family, and communityproblems. Like the ICF, Healthy People 2010 takes the po-sition that disability and chronic conditions are not univer-sally debilitating and that the overall well-being and healthof these individuals must be a priority.

Legislation is but one step toward equality for those af-fected by disabilities and chronic illnesses. The ADA hasprovided for many improvements in accessibility and spe-cific legal protections for the disabled, but it is only the be-ginning. Discrimination can occur at many levels; some ishurtful and intentional, but most results from misunder-standing of the needs and desires of disabled persons andtheir families. This may even occur in relation to the provi-sion of health care because of lack of education. Improve-ment can be found only with increased community educationprograms for professionals and the public that target themyths and misunderstandings about those with disabilitiesand chronic illnesses.

Community health nurses are in a prime position to ad-vocate for the health needs of the disabled and chronicallyill. With a long history of serving those who are most vul-nerable, community health nurses can help make neededchanges at the individual, family, and community levels. Al-though it is often easier to focus on the needs of the indi-vidual, those needs are most often shared by many others.Nurses have long recognized the need to collaborate withother professionals in reaching the goal of improved healthcare for their clients; this continues to be an important as-pect of successful efforts on behalf of the disabled and thechronically ill. It will take the concerted efforts of many toimplement changes necessary to improve the lives of thosemost affected, their families, and the communities in whichthey live.

The next time you have difficulty opening a door that isunusually heavy or struggle to open the lid of a jar or feel thatyou were treated differently than someone else in the receiptof services, take that moment to think. Think about the chal-lenges, struggles, and pain that face so many citizens. Al-though many argue against improving accessibility of citystreets and sidewalks because of the expense, those samepeople may one day find that they, too, are faced with tryingto master a curb that is just a bit too high.


REFERENCES

American Council of the Blind. (2003). Organizational profile.Retrieved February 9, 2004, fromhttp://www.acb.org/profile.html

American Foundation for the Blind. (2002). About us. RetrievedFebruary 9, 2004, from http://www.afb.org

American Obesity Association. (2002). Disability due to obesity:Are you disabled? Retrieved February 9, 2004, fromhttp://www.obesity.org

Becker, G., & Newsom, E. (2003). Socioeconomic status anddissatisfaction with health care among chronically ill AfricanAmericans. American Journal of Public Health, 93, 742–748.

Cannuscio, C.C., Jones, C., Kawachi, I., Colditz, G.A., Berkman,L., & Rimm, E. (2002). Reverberations of family illness: Alongitudinal assessment of informal caregiving and mentalhealth status in the Nurses’ Health Study. American Journal ofPublic Health, 92, 1305–1311.

Egede, L.E., & Zheng, D. (2003). Racial/ethnic differences inadult vaccination among individuals with diabetes. AmericanJournal of Public Health, 93, 324–329.

Fisher, H.R. (2001). The needs of parents with chronically sickchildren: A literature review. Journal of Advanced Nursing,36, 600–607.

Grayson, G. (2003). Talking with your hands, listening with youreyes. A complete photographic guide to American SignLanguage. Garden City Park, NY: Square One.

Guide Dogs for the Blind. (2003). Welcome to guidedogs.com!Retrieved February 9, 2004, from http://www.guidedogs.com

Hwu, Y., Coates, V.E., Boore, J.R., & Bunting, B.P. (2002). Theconcept of health scale. Developed for Chinese people withchronic illness. Nursing Research, 51, 292–301.

Marshall, D., McConkey, R., & Moore, G. (2003). Obesity inpeople with intellectual disabilities: The impact of nurse-ledhealth screenings and health promotion activities. Journal ofAdvanced Nursing, 41, 147–153.

Morehead, P., & Morehead, A. (Eds.). (1995). The new AmericanWebster handy college dictionary. New York: Penguin Books.

National Association of the Deaf. (1993). The NAD position paperon ASL and bilingual education. Retrieved February 9, 2004,from http://www.nad.org

National Association of the Deaf. (2003). About NAD. RetrievedFebruary 9, 2004, from http://www.nad.org/about/index.html

National Council on Disability. (1986). Toward independence: Anassessment of Federal laws and programs affecting personswith disabilities—with legislative recommendations. RetrievedJune 16, 2003, from http://www.ncd.gov

National Council on Disability. (2000). Promises to keep: Adecade of Federal enforcement of the Americans with Disabili-ties Act. Retrieved February 14, 2004, fromhttp://www.ncd.gov/newsroom/publications/promises_1.html

National Council on Disability. (2003). What’s new. RetrievedJune 16, 2003, from http://www.ncd.gov

National Federation of the Blind. (2003a). About the NFB.Retrieved February 9, 2004, from http://www.nfb.org/aboutnfb.htm

National Federation of the Blind. (2003b). What is Braille andwhat does it mean to the blind? Retrieved XXXX fromhttp://www.nfb.org/books/books1/ifblnd03.htm

National Organization on Disability. (2002a). About us. RetrievedFebruary 9, 2004, from http://www.nod/org

National Organization on Disability. (2002b). Key findings: 2000NOD/Harris Survey of Americans with disabilities. RetrievedFebruary 9, 2004, from http://www.nod/org

Rapaport, L. (2003, June 22). CalPERS seeks proof of payofffrom prevention. The Valley Times, A5.

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A C T I V I T I E S T O P R O M O T EC R I T I C A L T H I N K I N G

1. Arrange to interview an individual with a dis-ability (eg, hearing, vision, mobility) about thechallenges that they have faced in interac-tions with nondisabled persons.

2. Visit some of the nongovernmental sites listedunder Internet Resources and read some ofthe personal stories that are included.

3. Take an inventory of your house or apartmentand make a list of modifications you wouldneed to make if you were suddenly confinedto a wheelchair. Would you even be able tostay in your current residence?

4. As part of your regular clinical assignment incommunity health nursing, look at thoseclients and families who are dealing with ei-ther a disability or chronic illness and assesshow often you or other community healthnurses have addressed health promotion ac-tivities (eg, healthy eating, physical activity,leisure-time activities) with those clients.

5. Review your family history for chronic healthconditions. Are you at risk? If so, what haveyou done to reduce your risk over the past 12months?

promote community integration. Retrieved February 9, 2004,from http://www.hhs.gov/ocr/complianceactiv.html

Wilber, N., Mitra, M., Walker, D.K., Allen, D., Meyers, A.R., &Tupper, P. (2002). Disabilities as a public health issue:Findings and reflections from the Massachusetts Survey ofSecondary Conditions. The Milbank Quarterly, 80, 393–419.

Wood, P.R., Smith, L.A., Romero, D., Bradshaw, P., Wise, P.H., &Chavkin, W. (2002). Relationships between welfare status, healthinsurance status, and health and medical care among childrenwith asthma. American Journal of Public Health, 92, 1446–1452.

World Health Organization. (1980). International classification ofimpairments, disabilities, and handicaps. Geneva: Author.

World Health Organization. (2001). International classification offunctioning, disability and health. Geneva: Author.

World Health Organization. (2002). The World Health Report2002: Reducing risks, promoting healthy life. Geneva: Author.

SELECTED READINGS

Damush, T.M., Stump, T.E., & Clark, D.O. (2002). Body-massindex and 4-year change in health-related quality of life.Journal of Aging and Health, 14, 195–210.

DiBenedetto, D.V. (2003). Finding disability-related informationon the Web. AAOHN Journal: Official Journal of the AmericanAssociation of Occupational Health Nurses, 51, 10–12.

Loeb, S.J., Penrod, J., Falkenstern, S., Gueldner, S.H., & Poon,L.W. (2003). Supporting older adults living with multiplechronic conditions. Western Journal of Nursing Research, 25,8–23.

Lutz, B.J., & Bowers, B.J. (2003). Understanding how disabilityis defined and conceptualized in the literature. RehabilitationNursing, 28, 74–78.

Minder, C.E., Muller, T., Gillmann, G., Beck, J.C., & Stuck, A.E.(2002). Subgroups of refusers in a disability prevention trial inolder adults: Baseline and follow-up analysis. AmericanJournal of Public Health, 92, 445–450.

Nosek, M.A., Howland, C.A., Rintala, D.H., Young, M.E., &Chanpong, G.F. (1997). National study of women with physicaldisabilities: Final report. Houston, TX: Center for Researchon Women with Disabilities.

Nunez, D.E., Armbruster, C., Phillips, W.T., & Gale, B.J. (2003).Community-based senior health promotion program using acollaborative practice model: The Escalante HealthPartnerships. Public Health Nursing, 20, 25–32.

Resnick, B. (2003). Health promotion practices of older adults:Testing an individual approach. Journal of Clinical Nursing,12, 46–55.

Spero, D. (2002). The art of getting well. A five-step plan formaximizing health when you have a chronic illness. Alameda,CA: Hunter House.

Thomsett, K., & Nickerson, E. (1993). Missing words. The familyhandbook on adult hearing loss. Washington, DC: GallaudetUniversity Press.

Tolson, D., Swan, I., & Knussen, C. (2002). Hearing disability: Asource of distress for older people and careers. British Journalof Nursing, 11, 1021–1025.

Internet ResourcesAmerican Council of the Blind: http://www.acb.orgAmerican Diabetes Association: http://diabetes.orgAmerican Foundation for the Blind: http://afb.orgAmerican Heart Association: http://www.americanheart.orgAmerican Obesity Association: http://www.obesity.orgGuide Dogs for the Blind: http://www.guidedogs.comNational Association to Advance Fat Acceptance: http://naafa.orgNational Association of the Deaf: http://www.nad.orgNational Center for Health Statistics:

http://www.cdc.gov/nchswwwNational Council on Disability: http://www.ncd.govNational Federation of the Blind: http://www.nfb.orgNational Institute of Diabetes & Digestive & Kidney Diseases:

http://www.niddk.nih.govNational Organization on Disability: http://www.nod.orgOffice of Minority Health Resource Center: http://www.omhrc.govRobert Wood Johnson Foundation: http://www.rwjf.orgU. S. Department of Justice (Americans with Disabilities Act

Home Page): http://www.usdoj.gov/crt/ada/adahom1.htmU. S. Department of Health and Human Services, Office for Civil

Rights: http://www.hhs.gov/ocrWomen with Disabilities (The National Health Information

Center): http://www.4woman.gov/wwd


Technology

Ch34 Chronic Illness