Preventing Secondary Conditions Associated with 
Spina Bifida or Cerebral Palsy Symposium 
February 17-19, 1994, Crystal City, Virginia

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A Framework for Promoting the Health of People with Disabilities
Donald L. Patrick, Mary Richardson, Helene E. Starks, and Mary A. Rose


MANAGING ONE'S health is a key to becoming self-sufficient, maintaining independence, and enjoying full participation in society. The newly enacted Americans with Disabilities Act (ADA) takes aim at discrimination against persons with disabilities and articulates goals for equal opportunity, full participation, independent living, and economic self-sufficiency. Fulfilling those goals, however, extends beyond implementing the immediate provisions of the act. It requires innovative strategies for health promotion, preventing complications related to the disabling condition, and adequately preparing the person with a disability to understand and monitor his or her own health.

Preventing disease and promoting the health of all Americans has typically received a low priority in the allocation of health resources. Much work has focused, however, on the development of effective clinical preventive interventions for general populations (U.S. Preventive Task Force, 1989). Health pro-motion and disease prevention specifically targeted to the needs of persons with disabilities have received less attention.

People with disabilities are often not included in programs for the primary prevention of chronic conditions such as diabetes, cancer, heart disease, and stroke. People with disabilities are also at risk for secondary conditions, and reducing the incidence and the impact of secondary conditions on their opportunities must be one of the important goals of any health promotion agenda for people with disabilities.

Finally, because people with disabilities face severe disadvantages "socially, vocationally, economically and educationally" (Americans with Disabilities Act of 1990: §2[a]6), the prevention agenda must take into account people's social and cultural environments. Improving the quality of life, which is influenced not only by health but also by the social and cultural environment, means promoting opportunity for people with disabilities to achieve independence, equality, full participation, and economic self-sufficiency. Prevention for people with disabilities, predicated upon a social perspective of disability, therefore encompasses the promotion of healthy lifestyles and a healthy environment, the prevention of further disabling conditions consequent to the primary impairment, and the promotion of opportunity.


EXPANDING THE CONCEPT OF PREVENTION

Prevention implies different things for people with and without disabilities. For people without disabilities, primary prevention begins with a person free of disease or impairment and includes all efforts to eliminate or inhibit the onset and development of disease and injury. Secondary prevention involves screening and early treatment of disease.

For people who have disabilities, primary and secondary prevention include all efforts to prevent further disabling conditions, both those associated with the disablement process (secondary conditions) and those that are not, such as the usual consequences of aging or conditions associated with environmental hazards or lifestyle, such as smoking and alcohol consumption.

Disability is not a static condition (Pope, 1992; Zola, 1989), and persons with disabilities are susceptible not only to chronic conditions found in the general population but also to conditions secondary to their primary disability. For people who already have an impairment, primary prevention includes all measures to eliminate risk factors for chronic conditions through modifications of the social and the physical environment, and through the delivery of preventive services.

Interventions may include protocols for increasing exercise, improving diet, controlling weight, reducing substance abuse, and screening for heart disease, cancer, and diabetes. These interventions may resemble those designed for general populations; more likely, however, they will require modifications for persons with disabilities.

The goal of primary prevention and health promotion is to prevent or to interrupt the disabling process at the very beginning. For persons with disabilities, this means preventing additional diseases or injuries. Primary prevention interventions occur throughout the life course. These interventions will have profound implications for the person's quality of life, as they are general health promotion strategies.

Secondary prevention for people with disabilities involves all measures to limit or reverse the impact of the disabling condition and the development of secondary conditions and their multiple impacts on function, activity, and opportunity. For example, it takes effort to prevent contractures secondary to burns or traumatic brain injury. Preventing the depression associated with disability is also important for many persons with impairments. This causal relationship between primary impairment and secondary conditions lends itself well to preventive interventions that reduce the risk of secondary conditions (Pope, 1992). Interventions include screening for early detection and treatment of secondary conditions, reducing the risk factors for secondary conditions, education, promoting self-care, and counseling.

The standard definition of tertiary prevention is rehabilitation, or the attempt to restore function subsequent to an impairment or illness. Focusing simply on restoring function does not, however, constitute prevention aimed at the whole person and his or her quality of life. Health care interventions have the potential for improving function through rehabilitation, the application of technology, or modifications in the environment.

Tertiary prevention, so understood, involves all activities designed to prevent the disadvantages associated with impairments and disabilities and to promote opportunity. Tertiary prevention interventions may be directed toward persons with disabilities, their immediate environment, or society as a whole. Interventions that promote the integration (or reintegration) of people with disabilities into school, work, or other community settings will promote other opportunities as well as lower the barriers of social stigma and isolation.

A CONCEPTUAL MODEL OF DISABILITY IN THE LIFE COURSE

Disability occurs across the life span and is the consequence of physical or mental impairments that may begin very early in the life course (i.e., developmental disabilities), occur as a result of injury, or develop later in life (e.g., chronic conditions). There is a shortage of data and research on the epidemiology of disablement in the United States (Pope & Tarlov, 1991).

The Disabilities Prevention Program of the Centers for Disease Control and Prevention (CDC) compiled working papers on the prevention of primary and secondary disabilities that focus on the major causes of disabilities and on improving the quality of life of people with disabilities (Toal, Burt, & Tomlinson, 1993). The papers are meant to provide guidance for the direction of prevention efforts. The primary recommendation for prevention of all types of disabilities and for improving people's quality of life is to develop coordinated epidemiological research pro-grams for planning and evaluating disability prevention initiatives.

Disability is generally defined as a limitation in function or restriction in major life activity consequent to a mental, emotional, or physical health condition (LaPlante, 1991, 1993). The ADA expands both the definition and concept of disability, describing it as "a physical or mental impairment that substantially limits one or more of the major life activities of such individuals, a record of such impairment, or being regarded as having such an impairment" (Americans with Disabilities Act of 1990: G3[2]). This definition takes into account both the context of a person's disability and the societal response. A person may not be as disabled or disadvantaged by an impairment as by the way society treats him or her.

Defining disability as restriction in major life activities arising both inside and outside the person provides a means for understanding the major causes of these limitations as occurring across the life span and allows one to expand the model of disability and its determinants to preventive strategies. In order to develop health promotion strategies for people with disabilities, we build upon the model of disability developed by the World Health Organization (1980) and the Institute of Medicine (Pope & Tarlov, 1991). We propose a holistic model of disability that shows all the places for potential intervention to prevent progression toward disability, including preventing the onset of disabling conditions and disadvantage.

The model provides a framework for discussing opportunities for health promotion and prevention activities for people with disabilities. The model shows five planes that together describe the person's life: the total environment, life course and events, the disabling process, opportunity, and quality of life. Each plane provides different opportunities for intervention and health promotion activities, and interactions that occur between the planes also provide opportunities for intervention. These interactions are depicted on the model by the arrows and the circular symbols.

The model assumes that disability is not a linear process, as it does not necessarily proceed in a predictable fashion. Two persons with similar life circumstances, similar impairments, and similar opportunities may experience disability very differently. The disablement process may be slowed, halted, or reversed by efforts to

• restore function,
• prevent secondary conditions that can exacerbate existing dysfunction or lead to new dysfunction, or
• reduce the disadvantage experienced by lack of opportunity to participate in community life.

The person's total environment, represented in the first plane of the model, encompasses the biological, physical, social, economic, and cultural spheres of a person's life. Risk factors for developing disabling conditions exist within these spheres; these risk factors may be manipulated to prevent those conditions and to promote opportunity. The total environment is both internal and external to the person.

Risk factors that are extrinsic include the cultural, economic, political, and social environments, including all preventive services, sociomedical care, and rehabilitation activities. Intrinsic factors include biological processes and genetic influences, as well as the lifestyle and behaviors of the person, including abilities to withstand, adapt to, or cope with his or her environment.

The second plane of the model describes all stages in a person's life course, including parenthood and the prenatal period, infancy, childhood, adolescence, and adulthood. Events that may lead to disabling conditions may occur at all stages; these events may be infections, injuries, or the natural processes of development and aging.

The third plane, showing the disabling process, describes the transition from a disease or injury itself to disability. The stages in this process are disease or injury, which has also been labeled pathology (Pope & Tarlov, 1991); impairment, the anatomic, physiologic, mental, or psychologic abnormality; functional limitation, limitations in performance of usual organ functions; and disability, restrictions in major social role activity. This sequence may not be linear, and prevention activities can be designed to interrupt and even reverse the process at any stage.

Opportunity, shown on the fourth plane of the model, is represented as the interaction between the total environment of the person, in his or her particular stage of the life course, and the disabling process. Terms from the Americans with Disabilities Act provide the parameters of opportunity: equality, economic self-sufficiency, full participation, and independent living. The converse of opportunity is disadvantage, or handicap, to use an older term.

Quality of life (fifth plane), from the perspective of the person with disability, refers to the personal perception of his or her position in life in the context of a particular culture and value system and in relation to personal goals, expectations, standards, and concerns. Influences on this personal perception may arise from all aspects of one's total environment, from one's experience with health care and the disabling process, and from one's opportunity. Society's response to a person, to one's attempts to gain access to full participation, independent living, self-sufficiency, and equality, also affect one's perception of the quality of life.

Enhancing the quality of life as defined above is the goal of all health promotion and disease prevention for people with disabilities. Quality of life must be assessed from the individual's perspective. Improvement in the quality of life, in turn, can help to reverse the disablement process or modify risk factors. The two-dimensional representation of linear relationships can be misleading. A person's objective and subjective well-being, defined by the person and by others, can and does influence his or her response to the risk factors for disablement and the outcomes of the disablement process.

For example, socioeconomic status, educational attainment, or physical sur-roundings are among the many objectively evaluated life qualities that are both risk factors for disablement and modifiers of response to disablement. Personal perceptions of life quality such as satisfaction with health and life circumstances are key subjective responses to the experience of functional limitations, disability, and disadvantage.

People with disabilities in their communities experience limitations on all planes of the model. Throughout life, people with developmental disabilities may experience musculoskeletal complications consequent to spina bifida or cerebral palsy, isolation from their peers in school, and dependence for personal care on family members into early adulthood. Preventive efforts in the case of developmental disabilities have focused on prevention of the primary disability (Pope & Tarlov, 1991). Improving the quality of life of children and young adults with disabilities, however, requires preventive interventions that address the full spectrum of their lives.

Arthritis, high blood pressure, heart disease, diabetes, and substance abuse affect people with disabilities, just as they do the general population, but they may have unique implications for the health of people with disabilities. Persons with disabilities may be at higher risk than the general population for moderate to severe substance abuse (those who have survived traumatic head injuries have been found to be more likely to abuse substances [National Head Injury Foundation, 1988; Reilly, Kelley, & Faillace, 1986]).

Substance abuse could limit their opportunities to work or attend school, maintain positive relationships with friends and family, earn an income, and live independently. Effective prevention for persons with disabilities, then, must encompass the full range of health promotion and disease prevention activities.

IMPLEMENTING THE MODEL
Comprehensive preventive intervention protocols specifically designed for people with disabilities are in the earliest stages of development. We need to demonstrate such interventions in community settings to identify barriers to implementation and to test the efficacy of the interventions.

The conceptual model yields two general types of strategies for preventing disability. One focuses on preventing the disabling process from occurring or progressing (the third plane of the model); the other focuses on promoting opportunity (the fourth plane). Both strategies are used in the preven-tive protocols we present here. We have developed a matrix to show how these two types of protocols might be implemented in clinical and community settings and who the participants might be for proposed interventions (see Table 1).

Table 1. Implementation of Two Types of Preventive Strategies

Preventive Strategy	Locus of Intervention	Participant Group 1	Participant Group 2	Participant Group 3	Participant Group 4
Prevention of the disabling process	Clinical (e.g., prevention of contractures)	Physical therapy	Physical therapy	Access to physical therapy	Surveillance, case management
	Community (e.g., prevention of substance abuse)	Self-help, education	Support, role modeling	Information, services	Surveillance, services
Promotion of opportunity	Community (e.g., return to work)	Employment skills	Support	Job placement, on-site support	Surveillance, coordination with vocational rehabilitation
	Clinical (e.g., teaching self-care skills)	Self-care management	Support, case management	Access	Surveillance

Group 1: Persons with disabilities

Group 2: Families
Group 3: Advocacy groups

Group 4: CDC, state and local health departments

The clinic and the community are appropriate sites for both types of interventions. Clinical interventions may occur in tertiary centers, family practice clinics-indeed, at any point of interaction between clinicians and consumers. The community here is understood to include people's social arenas: school, home, work, recreation.

 

Initiatives for persons with disabilities must recognize the importance of enhancing personal autonomy in decision making. People with disabilities must be active partners in disability prevention. A wide range of opinions, motivations, and activities exist within the community of persons with disabilities, and these sometimes divide the community and slow the development of coordinated strategies. Because of their experience with societal attitudes that adversely affect persons with disabilities, some disabled persons and their advocates view society itself as the greatest impediment to improving their quality of life. Major challenges to disability prevention include forging partnerships among disability organizations and disseminating information to all persons with disabilities.

Self-care is an important aspect of the participation of people with disabilities in promoting their own health. Participation in prevention activities above and beyond daily self-care may be especially difficult for persons with disabilities, as they may encounter several barriers. These barriers may include:

• the need to focus most of their time and energy on managing the complex health and social problems associated with their disabling conditions, which pushes the prevention of additional chronic conditions lower on their list of priorities;
• the difficulty inherent in recruiting participants who are dispersed over a wide geographic area;
• the difficulties of locating programs in relatively convenient and accessible places;
  the lack of counseling by health care practitioners to participate in health promotion activities, either because the practitioners feel pessimistic about people's ability to change or feel they have insufficient training in these areas (Harris, Caspersen, DeFriese, & Estes, 1989); and
• the lack of knowledge about how to access health promotion programs in their communities.

Nevertheless, some precedents for health promotion have been set among persons with disabilities, for the goals of the independent living movement have much in common with those of health promotion. Primary among these is the achievement of the person's highest potential, be it through independence or regular exercise. Individual responsibility for self-care requires a degree of health awareness and skill on the part of the person with a disability, knowledge that health professionals may participate in developing. Ultimately, however, the layperson takes responsibility to make decisions based on his or her understanding of health conditions (Brooks, 1984). Participants in health promotion interventions for people with disabilities, therefore, include first and foremost persons with disabilities, as well as clinicians, families, advocates, and state and local health departments. Others not shown in the table could include employers, friends, and coworkers.

Health care prevention strategies are most obviously effective in preventing secondary conditions. The impact of disability resulting from contractures in a person with traumatic brain injury can be reduced, or the contractures can be prevented altogether, if preventive intervention begins early enough, in the hospital or as the person returns to life outside the hospital. But rehabilitation services and primary care may not intersect for persons with disabilities, and care may be fragmented by the multiplicity of provider specialties, health care de-livery systems, and actors, including the persons with disabilities, their families, educators, social service workers, and employers.

Integrating health care services has been identified as a high priority for prevention for persons with disabilities (Pope & Tarlov, 1991; Toal, Burt, & Tomlinson, 1993), so health care inter-ventions may also take the form of organizing and coordinating systems of care and preventive services. However, to view the person with disability as a whole person requires that the purview of health care be expanded to incorporate the promotion of opportunity.

Health promotion interventions, as shown in Table 1, may incorporate a full range of methods, from individual-focused therapy to community education campaigns. In developing prevention protocols, advisory groups working on our protocols for people with spinal cord injuries designed programs ranging in scope of influence from self-care to integration of work and school in recognition of the far-ranging impact in a person's life of secondary conditions.

For many people with spinal cord injury (or developmental disabilities like cerebral palsy and spina bifida), pressure ulcers, a common problem resulting from decreased skin sensation and limited mobility, are a major health concern. Persons who experience pressure ulcers face a reduced quality of life when long hospital stays threaten their jobs, employment history, financial independence, social life, and psychological health.

One proposed intervention that we developed to prevent pressure ulcers is a clinical screening protocol. The primary participants are persons with spinal cord injury and clinicians, including primary care providers, nurses, health aides, and outpatient nurses. Periodic screening for risk factors and education to support protective behaviors to prevent pressure ulcer formation are recommended for all persons with spinal cord injury.

The proposed intervention is a checklist for use by primary care providers to identify risk factors and to educate people with spinal cord injury about behaviors for preventing pressure ulcers. Pressure releases, skin checks, and other elements of preventive self-care would constitute the person's role in the intervention. (A copy of this protocol is available from the authors.)

Another preventive protocol, developed for persons born with neural tube defects, is an example of health promotion. This protocol focuses on social incontinence, defined as embarrassment from soiling and odor resulting from poor management of impaired bowel and bladder functioning. Many adolescents born with a neural tube defect experience social incontinence, either because they have failed to achieve independence in managing their toileting or because they experience accidents.

The intervention proposed seeks to promote independence among adolescents as they manage bowel and bladder function on a daily basis and as they deal with special situations and accidents. The intervention focuses, therefore, not only on the individual person's self-care behaviors but also on the community's acceptance of accidents. If school friends are to accept accidents without ostracizing or stigmatizing the person with a disability, they must understand their friend's birth defect and its consequences, revise their own thinking about normal bodily functioning, and accept the occasional incident as normal.

Table 2. We Are Responsible

For

• Observing our health
• Seeking expert advice
• Sharing our experience
• Participating in decisions
• Acting on decisions
• Living with the results

The proposed intervention has several components designed to influence the young person's progress toward independence in toileting and his or her school classroom environment (see Tables 2, 3, and 4). Motivational interviewing to encourage the young person and his or her family toward independence may be a first step for some. A school program, presented in the form of a newsletter written for adolescents, addresses contingency planning for accidents and skill building for the individual, as well as issues of acceptance and understanding for other students and teachers in the classroom.

Sensitivity training for the classroom and a buddy system for younger children also target the school environment for social acceptance of the whole person. "Independence camps" provide guidance and motivation for those adolescents who are maintaining their independence in bowel and bladder continence. (This protocol is also available from the authors.)

Table 3. A Checklist for Health

Table 4. A Checklist for Independence

Can I (with assistance if needed)

• Bathe, eat, dress, move about, and care for my personal needs?
• Enter into meaningful relationships?
• Maintain my household?
• Use resources in the community?
• Use transportation to get about the community?
• Have meaningful activity like going to school, doing a job or volunteer work?
  

CONCLUSION

Preventive strategies for persons with disabilities can be designed on the basis of the conception of disability in the life course presented here and can use the methods we have developed for intervening at the clinical and community level to prevent disease and promote health and opportunity. Cost-effective primary, secondary, and tertiary preventive strategies are needed. Preventive strategies must be tailored to the specific needs of different groups of persons with disabilities in order to be acceptable and effective. At the same time, these strategies must be incorporated into clinical practice and community health promotion efforts that are population-based, and not disability-specific.

The development of preventive services for persons with disabilities must occur within the health care reforms that affect all Americans. People with disabilities and their advocates must play a major role in the design and in the implementation of these strategies; those most affected must contribute the knowledge, experience, and values that are the keys to success. The costs and outcomes of competing prevention strategies should be rigorously compared. Health promotion and disease prevention for people with disabilities should play a central role in any public policy in the United States that purports to promote health and prevent or eliminate disadvantage.

REFERENCES

Americans with Disabilities Act of 1990, Public Law 101-336, 104 Stat. 327-378 (1990).

Brooks, N. A. (1984). Opportunities for health promotion: Including the chronically ill and disabled. Social Science in Medicine, 19(4), 405-409.

Harris, S. S., Caspersen, C. J., DeFriese, G. H., & Estes, H., Jr. (1989). Physical activity counseling for healthy adults as a primary preventive intervention in the clinical setting: Report for the US Preventive Services Task Force. JAMA, 261, 3590-3598.

LaPlante, M. P. (1991). The demographics of disability. In J. West (Ed.), The Americans with Disabilities Act: From policy to practice (pp. 55-77). New York: Milbank Memorial Fund.

LaPlante, M. P. (1993). State estimates of disability in America (pp. 1-33). (U.S. Department of Education, Office of Special Education and Rehabilitative Services, Disability Statistics Report, Report 3). Washington, D.C.: National Institute on Disability and Rehabilitation Research.

National Head Injury Foundation, Professional Council. (1988). Substance Abuse Task Force white paper. Southborough, Mass.: National Head Injury Foundation.

Pope, A. M. (1992). Preventing secondary conditions. Mental Retardation, 30, 347-354.

Pope, A. M., & Tarlov, A. R. (Eds.). (1991). Disability in America: Toward a national agenda for prevention. Washington, D.C.: National Academy Press.

Reilly, E. L., Kelley, J. T., & Faillace, L. A. (1986). Role of alcohol use and abuse in trauma. Advances in Psychosomatic Medicine, 16, 17-30.

Toal, S. B., Burt, R. L., & Tomlinson, E. C. (1993). National Conference on the Prevention of Primary and Secondary Disabilities: Proceedings. Atlanta, Ga.: Centers for Disease Control and Prevention, U.S. Department of Health and Human Services.

U.S. Preventive Services Task Force. (1989). Guide to clinical preventive services: An assessment of the effectiveness of 169 interventions. Baltimore, Md.: William & Wilkins.

World Health Organization. (1980). International classification of impairments, disabilities, and handicaps. Geneva, Switzerland: WHO.

Zola, I. K. (1989). Toward the necessary universalizing of a disability policy. Milbank Quarterly, 67(Suppl. 2, Pt. 2), 401-430.

Donald L. Patrick, Ph.D., M.S.P.H., holds appointments in the Departments of Health Services and Rehabilitation Medicine at the University of Washington in Seattle; Mary Richardson, Ph.D., M.H.A., and Mary A. Rose, B.A., are with the Department of Health Services; Helene E. Starks, M.P.H., is with the Department of Medicine. Drs. Patrick and Richardson are codirectors of the Center for Disability Policy and Research at the University of Washington; work on this paper was done under the auspices of the Center.

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