Leslie Neal-Boylan*
Rehabilitation Clients in the Community
Focus Questions
What is the magnitude of disability in the United States?
What are concepts related to disability and rehabilitation?
What are some common conditions that require rehabilitation?
How does legislation affect the rehabilitation process?
What is the role of the rehabilitation nurse?
How does the rehabilitation client achieve community reintegration?
What are community resources for individuals with disabilities?
Key Terms
Activity limitation
Disability
Habilitation
Handicap
Impairment
Rehabilitation
Concept of disability
The Americans with Disabilities Act (ADA) of 1990 (Public Law 101-336) defines disability as a physical or mental impairment that substantially limits one or more of the major life activities of an individual. According to the World Health Organization (WHO):
Disabilities (disability) is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. (WHO, 2011)
According to the Agency for Healthcare Research and Quality (AHRQ, 2011), there is no one definition of disability that will fit all circumstances. Considerations regarding disabilities vary according to the person’s age and place within the lifespan, and the definition used will influence both the approaches and the objectives utilized with regard to persons with disabilities. Not everyone who has impairment is disabled, nor is every person with a disability handicapped, i.e., limited in some fashion by a disability. For example, someone may be missing a fifth finger but may be able perform all desired tasks without it. This person would have a disability but not be handicapped by it.
An estimated 71.4 million Americans (32% of the population) live with disabilities (Centers for Disease Control and Prevention [CDC], 2011). Of those 15.9 million have great difficulty or are unable to walk a quarter of a mile (Table 26-1). Approximately 35 million Americans have difficulty hearing, and 19 million have trouble seeing (CDC, 2011).
Table 26-1
Disabilities among Noninstitutionalized Adults Aged >18 Years
Disability type | Numbers disabled (in thousands) | Percent of population |
Difficulty with specific functional activities Example: Climbing stairs Walking three city blocks | 37,669 | 17.3% |
Difficulty with activities of daily living Example: Bathing/toileting | 8,451 | 3.9% |
Difficulty with instrumental activities of daily living Example: Preparing meals Taking care of money/bills | 13,485 | 6.2% |
Reported selective impairments Example: Mental retardation Alzheimer’s disease Learning disability | 13,923 | 6.4% |
Use of assistive aid Example: Use of wheelchair or cane | 11,226 | 5.2% |
Limitations in ability to work | 13,104 | 6.3% |
Data from Centers for Disease Control and Prevention. (2009). Prevalence and most common causes of disability among adults—United States, 2005. Table 1. Morbidity and Mortality Weekly Report, 58(16), 421-426.
The issues related to disabilities have far-reaching social and public health consequences in the United States. The cost of supporting employable Americans with disabilities who cannot work is approximately $232 billion annually (U.S. Department of Health and Human Services [USDHHS], 2011a). The national cost of disabilities totals more than $452 billion each year, including an estimated $350 billion in medical costs (AHRQ, 2007).
Disabilities have a variety of causes and are not evenly distributed among the population. Causes of disability include congenital defects, mental retardation, traumatic injuries, and consequences of diseases (e.g., amputation in those with diabetes, altered mobility related to pain from arthritis, altered cognition in those with schizophrenia). Although disability occurs in people of all ages, disability rates increase with age. As life expectancy and the number of aged persons in society increase, more people with disabilities will require care. We are now able to control chronic illnesses and injuries more effectively, and as a result, people with disabilities live longer. The number of older adults (65 years and older) with disabilities has increased from approximately 55% (USDHHS, 2011a) in 1997 to approximately 61% in 2009 (CDC, 2011). The prevalence of disability in the United States for all age groups has remained consistent at 18% to 19% (USDHHS, 2011a). The majority of adults with disabilities report incomes below the federal poverty threshold, influenced, in part, by the inability to work and by the need to purchase medical equipment (Altman & Bernstein, 2008). Other reasons for this disparity include inadequate prenatal nutrition and care, higher accident rates, less preventive care, a higher prevalence of chronic disease, and less access to treatment for health problems among poor populations. According to the Community health and rehabilitation nurses seek to prevent and reduce sources of handicaps, such as stereotyping, architectural barriers, and failure to accommodate those with disabilities. Such interventions are a part of the rehabilitation process.
Concept of rehabilitation
Historical Overview
Rehabilitation includes a wide range of activities in addition to medical care, including physical, psychosocial, and occupational therapies. It is a process aimed at enabling people with disabilities to reach and maintain their optimal levels of physical, sensory, intellectual, psychological, and/or social functioning. Rehabilitation provides people with disabilities the tools they need to attain independence and self-determination, including means to provide and/or restore functions or compensate for the loss or absence of a function or for a functional limitation (WHO, 2007). The mission of rehabilitation is complex. Its objectives reach beyond the rehabilitation of individual clients to include educating all health care professionals, as well as the general public, to create a society in which people with disabilities have a fair chance to work, enjoy life, and live as independently as possible. Thus, a central focus of rehabilitation is the quality of life.
Historically, the problems of people with disabilities were often treated in an indifferent fashion or ignored. People had little understanding of the degree of adaptation required to successfully carry out the activities of daily living (ADL). Indignities and isolation have long surrounded people with disabilities. Historical examples include the following (Rosen & Fox, 1972):
• Lepers shunned and ridiculed by society
• Infants with disabilities isolated and left to die in some cultures
Over time, attitudes moderated as the belief in the essential worth of all individuals evolved in Western thinking. People with physical and mental disabilities were better tolerated. In the nineteenth century, international legislation was passed that made workplaces responsible for injuries to employees. World War II produced an interest in functional rehabilitation as well as care of the actual injury or injuries.
Dr. Howard Rusk, director of the Army Air Corps Convalescent and Rehabilitation Services during World War II, developed the philosophy and concept of rehabilitation medicine. He continued his work after the war at Bellevue Hospital in New York City. Other health care professionals slowly came to embrace the concept of rehabilitation (Rusk, 1972).
The World Rehabilitation Fund, founded in 1955, was an early advocate for those with disabilities. The fund sponsors international projects to assist such people and lobbies to create a better understanding of their problems, provide training for health care professionals in the field of rehabilitation, and increase employment opportunities for rehabilitation clients (Rusk, 1972).
Access to public spaces and transportation has been addressed by legislation and regulatory efforts. For example, in 1973 the Rehabilitation Act established the Architectural and Transportation Barriers Compliance Board. This board can hold public hearings, conduct investigations, and order the recruitment and hiring of applicants with disabilities. The Act also issues regulations concerning barrier-free public facilities and educational institutions (Russel, 1973). With effect from 1983, the American National Standards Institute established standards to make buildings and facilities accessible to and usable by individuals with physical disabilities.
Modern rehabilitation nursing emerged during World War II. The contributions of rehabilitation nurses were recognized as distinct and important. Rehabilitation nursing evolved into a nursing specialty. To some extent, all nurses working with clients with impairments, chronic diseases, and acute injuries include aspects of rehabilitation in their practice.
Rehabilitation Nursing: A Specialty
“Rehabilitation nursing is the diagnosis and treatment of human responses of individuals and groups to actual or potential health problems stemming from altered functional ability and [related] altered lifestyle” (American Nurses Association [ANA] & Association of Rehabilitation Nurses [ARN], 2000, p. 4). Community health nurses who provide rehabilitation must be skilled in giving comfort and performing therapy, promoting adjustment and coping, supporting adaptive capabilities, and promoting achievable independence and meaning in life (Neal-Boylan & Buchanan, 2008). The community health rehabilitation nurse must possess specific knowledge and skills to provide effective nursing interventions. Expertise in the areas of psychiatric, medical, and surgical nursing is essential. Clients with mental health needs may benefit from rehabilitation services as well (see Chapter 33).
The Association of Rehabilitation Nurses (ARN) was recognized as a specialty nursing organization by the American Nurses Association (ANA) in 1976. The ARN’s stated purpose is “to promote and advance professional rehabilitation nursing practice through education, advocacy, collaboration, and research to enhance the quality of life for those affected by disability and chronic illness” (ARN, 2007). The ARN publishes a journal, Rehabilitation Nursing, which serves as a vehicle for sharing information and rehabilitation nursing research. The organization initiated certification for specialty practice as a means of recognizing a level of rehabilitation nursing expertise. Certified nurses use the title certified rehabilitation registered nurse (CRRN).
Currently, there are almost 6000 members and 10,000 CRRNs (ARN, 2011a). The organization continues to grow, facilitating educational, research, and professional advancement opportunities for rehabilitation nurses. Members are active in promoting the civil rights of people with disabilities and their families and in lobbying for legislation that provides an accessible environment for all citizens.
The rehabilitation nurse functions as a teacher, caregiver, case manager, counselor, consultant, client advocate, and researcher (Hoeman, 2008). Rehabilitation nurses help individuals affected by chronic illness or physical disability to adapt to their disabilities, achieve their greatest potential, and work toward productive, independent lives. They take a holistic approach to meeting patients’ medical, vocational, educational, environmental, and spiritual needs (ARN, 2011b).
The goal of the rehabilitation process is to support a holistic approach to nursing care that, with the collaboration of the team, will maximize client independence (Hoeman, 2008). In the professional practice of rehabilitation nursing, the nurse must be sensitive, flexible, creative, and assertive as she or he assists clients to successfully enter or reenter a society primarily designed for able-bodied persons. Nurses must examine their beliefs and feelings about disabilities and handicaps. Not all nurses can cope with a client’s lifelong consequences of devastating illnesses or injuries such as spinal cord injury, stroke, or muscular dystrophy. A belief in the promotion of quality of life is essential. Negative attitudes toward disability create serious obstacles to the formation of a therapeutic relationship and client adaptation.
Rehabilitation nursing plays a role in, and should be a component of, all phases of recovery. For those with injuries and severe illnesses, recovery often begins with admission to the acute care facility and continues throughout community reintegration. The rehabilitation nurse is a consistent, objective resource for the client and family as they adapt to an altered self-concept, changes in roles, and different means of accomplishing ADLs. The rehabilitation nurse must work together with the client, family, and rehabilitation team, as well as the community and the environment, to achieve realistic and favorable outcomes.
For those whose impairment is discovered at birth or in childhood, the habilitative process begins with acknowledgment of the problem. Rehabilitation is the recovery of an ability that once existed, whereas habilitation is the development of abilities that never existed before in the child.
The Environment and the Rehabilitation Client
The environment is the critical factor in determining the extent of an individual’s handicap. Disabilities can be handicapping in one situation but not in another, depending on the environment. For example, consider the person with chronic obstructive pulmonary disease (COPD) whose symptoms are aggravated by walking to an office on the fifth floor in a building without elevators. When he arrives at work, his altered oxygenation affects his ability to concentrate. Such a person would be disabled in the major life activity of work. Furthermore, if the employer insisted that the employee must perform his job at that site, the individual would be handicapped. (Although the Americans with Disabilities Act, discussed later in the chapter, could make this employer’s action illegal, such practices continue to occur.)
Community health nurses assist people with disabilities and their families in schools, workplaces, clinics, and homes. Nurses need to be alert to the environmental conditions encountered by people with disabilities in various settings. Atmospheric conditions, for example, temperature, humidity, rain, wind, and snow, can affect the signs and symptoms of medical conditions such as multiple sclerosis, arthritis, and chronic pain. Nurses can help clients learn to cope with such influences as they begin to reintegrate into the community. In addition, physical barriers such as steps, curbs, features of public transportation vehicles, and doorways can significantly hamper independent functioning. In one study, the majority of persons with disabilities (84.7%) reported that they had trouble with environmental barriers because of their disability. In that same study, one quarter of those with disabilities indicated that they were in need of home modifications but were unable to get them, and about the same number reported that they had difficulty accessing their health provider’s office (CDC, 2006a).
Psychosocial Aspects of the Environment
The environment also has a psychosocial component. Attitudes of “able-bodied people” have a profound effect on successful community reintegration. Incorrect beliefs about individuals with disabilities such as the belief that they cannot maintain jobs, attend school, or function as sexual human beings may severely inhibit or even halt the rehabilitation process. However, excessive sympathy such as providing extra privileges, failing to hold the person responsible for his or her actions, or attributing “good” qualities to someone because he or she has a disability, can be just as inhibiting. Both the physical and psychosocial components of the environment may require restructuring so that people with disabilities have a fair chance to work, attend school, play, and live satisfying lives (see the Ethics in Practice box).
Cost and Access Issues
Clients and families frequently have concerns about the availability and cost of health care. These concerns bring additional stress to an already stressful environment. Medicare pays for inpatient rehabilitation and selected home health care services for older persons and for individuals with disabilities who receive Social Security disability payments regardless of age. Medicare requires a 2-year wait for eligibility for young persons with disabilities who do not already qualify for Medicare because of age (Center for Medicare and Medicaid Services [CMS], 2011a). Rehabilitation services under Medicaid vary by state. Private health insurance programs vary widely in the type of coverage provided to people who are disabled and chronically ill.
In an effort to curb the cost of care, government health plans (Medicare and Medicaid) and private insurers have turned to health maintenance organizations (HMOs) and other forms of managed care. One strategy, initiated in managed care programs and expanded into private insurers, has been the institution of strict case management programs for people with chronic illnesses and other types of high-cost conditions (McCollum, 2008). Rehabilitation nurse specialists and community health nurses are often the case managers for these individuals.
The change to managed care and case management arrangements has been anxiety provoking for some individuals with disabilities, particularly in light of publicity about poor quality in some managed care arrangements (see Chapters 3 and 4). Although there has been widespread public concern about the quality of care provided in managed care, there are no substantial data at this time to indicate that managed care provides less or lower-quality care. Some studies of clients who are chronically ill show that managed care clients receive worse care for physical conditions, whereas others show the opposite (Sultz & Young, 2010).
Magnitude of disability in the united states
Disability is a result of impairments that often occur because of injury or chronic disease. The National Health Interview Survey (NHIS), a continuous, nationwide household survey conducted by the U.S. Census Bureau, includes questions about disability and health. The six most prevalent chronic conditions causing disability are arthritis, back or spinal pain, heart disease, lung and other respiratory problems, mental or emotional problems, and diabetes (CDC, 2009). However, more people report having these chronic impairments and diseases than report being disabled by them. Consequently, community health nursing efforts to prevent disability must address prevention and adequate treatment of these chronic conditions. Many of the Healthy People 2020 objectives (USDHHS, 2010) specify targets for identifying people with disabilities and reducing barriers that they typically confront. (See the Healthy People 2020 box on this page.)
Mental Illness and Disabilities
According to the National Interview Health Survey, in 2010, approximately 3.2% of adults age 18 years and older reported experiencing serious psychological distress in the previous 30 days. This is largely unchanged from 2008 (CDC, 2011; USDHHS, 2011b). Services provided to those with mental illness have moved toward general practitioners rather than psychiatric specialists (Wang et al., 2006). Consequently, persons with mental illness are more likely to be integrated into the community than previously. Persons with mental illness are not often thought of as candidates for rehabilitation services (Neal-Boylan & Buchanan, 2008). There are many people with mental illness living in community placements as a result of the push toward deinstitutionalization (see Chapter 33).
Chronic Illnesses and Disabilities
Some impairments and chronic diseases are associated with greater disability than are others. Table 26-2 identifies common chronic conditions that cause limitations in a major activity. Stroke is a leading cause of serious long-term disability in the United States along with cancer and heart disease (Kung et al., 2008). Half of all stroke clients will have residual physical and/or social disabilities (American Heart Association [AHA], 2007). The most common cause of disability is arthritis (CDC, 2009). Arthritis can seriously inhibit a person’s ability to work and function independently.
Table 26-2
Selected Conditions as Main Cause of Disability in Adults 18 Years and Older, United States, 2005
Chronic condition | Number of persons (in thousands) | Percentage of disabled with specific condition |
Arthritis | 8,552 | 19.0 |
Back or spine problem | 7,589 | 16.8 |
Heart trouble | 2,988 | 6.6 |
Lung or respiratory problem | 2,224 | 4.9 |
Deafness or hearing problem | 1,908 | 4.2 |
Limb/extremity stiffness or deformity | 1,627 | 3.6 |
Mental or emotional problem | 2,203 | 4.9 |
Diabetes | 2,012 | 4.5 |
Blindness or vision problem | 1,460 | 3.2 |
Stroke | 1,076 | 2.4 |
Broken bone/fracture | 969 | 2.1 |
Mental retardation | 671 | 1.5 |
Cancer | 1,007 | 2.2 |
High blood pressure | 857 | 1.9 |
Head or spinal cord injury | 516 | 1.1 |
Learning disability | 492 | 1.1 |
Senility/dementia/Alzheimer’s disease | 546 | 1.2 |
Kidney problems | 411 | 0.9 |
Paralysis | 257 | 0.6 |
Missing limbs/extremities | 209 | 0.9 |
Other | 7,496 | 16.8 |
Data from Centers for Disease Control and Prevention. (2009). Main cause of disability among civilian noninstitutionalized U.S. adults aged > 18 years with self-reported disabilities—United States, 2005. Morbidity and Mortality Weekly Report, 58(16), 421-426.
Mental illness is a source of functional disability. In 2005, approximately 16 million reported having cognitive, emotional, or mental functional difficulties (Brault, 2008). Traumatic injuries also account for a substantial number of persons with long-term disabilities.
Spinal Cord Injury and Traumatic Brain Injury and Disability
Approximately 1.7 million people experience traumatic brain injury (TBI), and 11,000 persons sustain a spinal cord injury (SCI) each year in the United States (Brainline, 2011; SCI-Info-Pages, 2011). TBI is the most common condition requiring extensive rehabilitation efforts. An estimated 5.3 million Americans live with disabilities resulting from TBI. Annually, more than 1.4 million people sustain a brain injury (CDC, 2006b). TBI most often occurs between the time of birth and 4 years and between15 and 19 years (Faul et al., 2010).
Approximately 80,000 persons each year are left with lifelong disabilities as a result of TBI (Pangilinan & Campagnolo, 2011). Their lifelong disabilities have an impact on their lives and the lives of their family members. The average survivor of TBI requires 5 to 10 years of rehabilitation. TBI costs the country an estimated $60 billion per year in medical costs and lost wages (Brainline, 2011). The severity of the injury influences the degree of residual deficit and the person’s subsequent need for medical and social support services in the community. People who sustain head injuries might have permanent functional deficits in one or more of the following areas: cognition, performance of ADLs, manipulation, bowel and bladder functions, mobility, speech, vision, educational performance, memory, concentration, attention, and behavior.
Those with SCIs are another significant group requiring extensive rehabilitation. SCIs are most common in young men between 16 and 30 years of age. Approximately 85% of people with SCI who live through the first 24 hours survive at least 10 years (SCI-Info-Pages, 2011). The number of people in the United States who live with an SCI is estimated to be between 250,000 and 400,000 (National Spinal Cord Injury Association, 2011).
Because of significant advances in health care technology and practice, more persons are surviving severe traumatic injuries. For example, approximately 87% of patients hospitalized for TBI recover sufficiently to be discharged from the hospital (CDC, 2006c). Client needs in this population are extensive and vary with the level and type of injury (i.e., complete or incomplete nerve damage). Both SCIs and TBIs require extensive long-term health care. An estimated 5.7 million persons require long-term care or lifelong help in performing ADLs as a result of either injury (CDC, 2008; National Spinal Cord Injury Association, 2007).
Veterans with Disabilities
Veterans are returning from the wars in Afghanistan and Iraq with disabilities. Over 5.32 million have served during the Gulf wars. In addition, there are living veterans with disabilities from injuries sustained during early conflicts. The number of veterans with disabilities (physical or mental) is over 5.5 million (U.S. Census Bureau, 2010). These veterans seek services through the Veterans Administration (VA) and community organizations.
Due to improvements in protective equipment such as body and vehicle armor, the mortality rate for Gulf War veterans is lower compared with rates from previous conflicts. More of these veterans have survived with multiple and severe injuries. These include:
• Traumatic brain injuries and spinal cord injuries
• Burns
• Mental health issues such as posttraumatic stress disorder (PTSD)