Mention and discuss the differentiation between the medical model and social construct definitions of disability.
population Affected by Disabilities.
Rural and Migrant Health
Read chapter 21 and 23 of the class textbook and review the attached PowerPoint presentations. Once done, answer the following questions.
- Mention and discuss the differentiation between the medical model and social construct definitions of disability.
- Identify and discuss selected health care and social issues that influence the ability of people with disabilities to live and thrive in the community.
- Mention and discuss the characteristics of rural community health nursing practice.
- Mention and describe the features of the health care system and population characteristics common to rural aggregates.
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Chapter 21
Populations Affected by Disabilities
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Most people whose lives do not end abruptly
will experience disability.
– Nies & McEwen (2015)
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Doing a Self-Assessment
What comes to mind when you think of someone with a disability?
Picture yourself as a person with a disability.
Imagine yourself as a nurse with a visible disability, or a client receiving care from a nurse with a disability.
Think about living in a family affected by disability.
What is the experience of living with disability within your community?
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Definitions for Disability
Disability is the interaction between individuals with a health condition and personal and environmental factors.
– World Health Organization, 2012
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WHO International Classification of Functioning, Disability, and Health
Disability is an umbrella term covering impairments, activity limitations, and participation restrictions (individual level).
An impairment is a problem in body function or structure—activity limitation or participation restriction (micro level).
A handicap is a disadvantage resulting from an impairment or disability that prevents fulfillment of an expected role (macro level).
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Table 21-1
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| Characteristic | Impairment | Disability | Handicap |
| Definition | Physical deviation from normal structure, function, physical organization, or development | May be objective and measurable | Not objective or measurable; is an experience related to the responses of others |
| Measurability | Objective and measurable | May be objective and measurable | Not objective or measurable; is an experience related to the responses of others |
| Illustrations | Spina bifida, spinal cord injury, amputation, and detached retina | Cannot walk unassisted; uses crutches and/or a manual or power wheelchair; blindness | Reflects physical and psychological characteristics of the person, culture, and specific circumstances |
| Level of analysis | Micro level (e.g., body organ) | Individual level (e.g., person) | Macro level (e.g., societal) |
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National Agenda for Prevention of Disabilities (NAPD) Model
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Figure 21-1 Reprinted with permission from Pope AM, Tarlov AR, editors: Disability in America: toward a national agenda for prevention, Washington, DC, 1991, Institute of Medicine, National Academy Press. Copyright © 1991 by the National Academy of Sciences. Courtesy National Academy Press, Washington, DC.
Quality of Life Issues
Transportation to a needed service
Cost of care
Appointment challenges
Language barriers
Financial issues
Migrant/noninsured issues
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Models for Disability
Medical model—a defect in need of cure through medical intervention
Rehabilitation model—a defect to be treated by a rehabilitation professional
Moral model—connected with sin and shame
Disability model—socially constructed
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Disability: A Socially Constructed Issue
Disability is a complex, multifaceted, culturally rich concept that cannot be readily defined, explained, or measured (Mont, 2007).
Whether the inability to perform a certain function is seen as disabling depends on socio-environmental barriers (e.g., attitudinal, architectural, sensory, cognitive, and economic), inadequate support services, and other factors (Kaplan, 2009).
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“Medicalization” Issues
Nurse needs to differentiate …
A person who has an illness and becomes disabled secondary to the illness
versus …
A person who has a disability, but may not need treatment
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“Medicalization” Issues (Cont.)
Nurse’s interaction with PWD and families
Approach on an eye-to-eye level
Listen to understand
Collaborate with the person/family
Make plans and goals that meet the other’s needs and draw on strengths and improve weaknesses
Empower and affirm the worth and knowledge of the person/family with a disability
Promote self-determination and allow choices
Note: PWD = persons with disabilities
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Historical Perspectives
Long history of institutionalization/segregation
Often viewed as sick and helpless
In the 20th century, special interest groups emerged to advocate for PWD (e.g., ARC)
Tragedies include Hitler’s euthanasia program
Deinstitutionalization began in 1960s-1970s
Stereotypical images still common in literature and media; these images influence prevailing perceptions of disability
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Historical Context for Disability
Early attitudes toward PWD
Set apart from others
Viewed as different or unusual
Documented in carvings and writings
Infanticide or left to die (not in Jewish culture)
Viewed as unclean and/or sinful
Served as entertainers, circus performers, and sideshow exhibitions
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Historical Context
18th and 19th century attitudes
No scientific model for understanding and treating
Disability seen as an irreparable condition caused by supernatural agency
Viewed as sick and helpless
Expected to participate in whatever treatment was deemed necessary to cure or perform
Industrial Revolution stimulated a societal need for increased education
If not third-grade level = feeble-minded
Special schools established in early 1800s
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Historical Context (Cont.)
20th century attitudes
Special interest groups were formed
First federal vocational rehabilitation legislation passed in early 1920s
Involuntary sterilization of many with intellectual disabilities
ARC (Association for Retarded Children) began to advocate for children with intellectual disabilities—today is Association for Retarded Citizens
ARC is “world’s largest community-based organization of and for people with intellectual and developmental disabilities” (ARC, 2009)
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Historical Context (Cont.)
20th century attitudes
One of the most horrendous tragedies under Hitler’s euthanasia or “good death” program
Killed at least 5000 mentally and physically disabled children by starvation or lethal overdoses
Killed 70,274 adults with disabilities by 1941
Over 200,000 people exterminated because they were “unworthy of life”
Deinstitutionalization movement in 1960s and 1970s
Community-based Independent Living Centers established
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Historical Context (Cont.)
Contemporary conceptualization
Stereotypical images remain common in literature and media
Population portrayed as a burden to society or from pity/pathos or heroic “supercrip” perspectives
“just as the paralytic cannot clear his mind of his impairment, society will not let him forget it.” (Murphy, 1990, p. 106)
Societal stigma still exists
Teasing or bullying often occurs in schools
Rehabilitation Act of 1973 and American with Disabilities Act of 1990 prohibit “disability harassment”
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Characteristics of Disability
Americans with Disabilities Act (ADA) of 1990 and Rehabilitation Act of 1973 defined disability according to limitations in a person’s ability to carry out a major life activity.
Major life activities: ability to breathe, walk, see, hear, speak, work, care for oneself, perform manual tasks, and learn
U.S. Census Bureau (2006) defines disability as long-lasting physical, mental, or emotional condition that creates a limitation or inability to function according to certain criteria.
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Examples of Disabilities
Physical disabilities
Sensory disabilities
Intellectual disabilities
Serious emotional disturbances
Learning disabilities
Significant chemical and environmental sensitivities
Health problems
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Measurement of Disability
Survey of Income and Program Participation (SIPP)
Functional activities
Activities of daily living (ADLs)
Instrumental activities of daily living (IADLs)
American Community Survey (ACS)
Surveys for disability limitation in six areas that affect function or activity (sensory, physical, mental/emotional, self-care, ability to go outside the home, employment)
Other organizations also collect disability data
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Prevalence of Disability
In 2010, approximately 18.7% of civilian noninstitutional population aged 5 years and older had a long-lasting condition or disability.
Of those with a disability, 12.6% had a “severe” disability.
Prevalence varies by race, age, and gender.
It is important for health care policymakers and health care providers to recognize that the prevalence of disability is increasing.
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Prevalence of Disability in Children
Approximately 15.2% of households with children have at least one child with a special health care need (disabling condition).
– National Survey of Children with
Special Health Care Needs (2009/2010)
A disability is defined by a communication-related difficulty, mental or emotional condition, difficulty with regular schoolwork, difficulty getting along with other children, difficulty walking or running, use of some assistive device, and/or difficulty with ADLs
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Recommendation for the Nurse
Listen to parental concerns
“Something is not right”
Establishes an important bond with parents
Nurse can serve as an intermediary
Regularly assess for key developmental milestones
Compare with predicted values
Work with team of resource providers on IEP
Be cognizant of disability within the context of culture and aging
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Legislation Affecting People with Disabilities
Individuals with Disabilities Education Act (IDEA) (1975); reauthorized in 1997, 2004
Ensured a free appropriate public education (FAPE) in the least-restrictive setting to children with disabilities based on their needs
Parents, students, and professionals join together to develop an Individualized Education Program (IEP), including measurable special educational goals and related services for the child.
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Americans with Disabilities Act of 1990 and ADA Amendments Act of 2008
ADA: Landmark civil rights legislation that prohibits discrimination toward people with disabilities in everyday activities
Guarantees equal opportunities for people with disabilities related to employment, transportation, public accommodations, public services, and telecommunications
Provides protections to people with disabilities similar to those provided to any person on basis of race, color, sex, national origin, age, and religion
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ADA (Cont.)
Refers to a “qualified individual” with a disability as a person with a physical or mental impairment that substantially limits one or more major life activities or bodily functions, a person with a record of such an impairment, or a person who is regarded as having such an impairment.
Qualifying organizations must provide reasonable accommodations unless they can demonstrate that the accommodation will cause significant difficulty or expense, producing an undue hardship.
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Americans with Disabilities Act of 1990 and ADA Amendments Act of 2008 (Cont.)
Ticket to Work and Work Incentives Improvement Act (TWWIIA)
Increases access to vocational services; provides new methods for retaining health insurance after returning to work
Increases available choices when obtaining employment services, vocational rehabilitation services, and other support services needed to get or keep a job
Became law in 1999, amended in 2008
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Public Assistance Programs
Cash assistance
Supplemental Security Income—SSI
Social Security Disability Insurance—SSDI
Food stamps
Public/subsidized housing
Costs associated with disability
Gaps in employment, income, education, access to transportation, attendance at religious services
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Health Disparities in Quality and Access
Disparities are caused by …
Differences in access to care
Provider biases
Poor provider-patient communication
Poor health literacy
Persons with disabilities experience …
Higher rates of chronic illness
Increased risks for medical, physical, social, emotional, and/or spiritual secondary issues
People with intellectual disabilities are
Undervalued and disadvantaged
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Systems of Support for People With Disabilities
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Figure 21-2
The Experience of Disability
PWD may be largest minority group in the United States
Different experiences, depending on …
Temporary disability
Permanent disability from accident or disease
Disability from progressive decline of a chronic illness
Benchmark event is acceptance of the label of “disabled”
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Children With Disabilities (CWD)
Family and caregiver responses
Redefine image and expectations for child and self
Sibling response influenced by age, coping, peer relationships, parents, impact on family
Levels of parental adjustment
The ostrich phase
Special designation
Normalization
Self-actualization
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Family Research Outcomes
Established various benefits, amid challenges
Families with satisfying emotional support experience fewer potentially negative effects of unplanned or distressing events.
Parents may grieve the loss of idealized or expected child over time.
Supportive relationship is needed.
Empowerment and enabling decision making on behalf of CWD is important.
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Knowledgeable Client
A person who lives with a disability commonly becomes an expert at knowing what works best for his or her body.
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The nurse who has information about the disability and the available community and governmental resources.
Knowledgeable Nurse
Strategies for the CH Nurse
Do not assume anything.
Adopt the client’s perspective.
Listen to and learn from client. Gather data from the perspective of the client and family.
Care for the client and family, not for the disability.
Be well informed about community resources.
Become a powerful advocate.
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Dealing With Ethical Issues
Spiritual perspectives
Quality of life (QOL) and justice perspectives
Proper use of scientific advances
Self-determination, deinstitutionalization, and disability rights
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When the Nurse Has a Disability
Education programs and employers must provide reasonable accommodations for qualified students and nurses.
Technical aspects of nursing tend to discriminate; nursing should emphasize “humanistic” capacities.
Type of setting influences functionability.
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Nurses Can …
… become familiar with a variety of ethical frameworks for decision making.
… help the patient and family access needed information to make informed decisions.
… help educate the public on health care issues.
… participate in the development of institutional policies and procedures related to disability.
… take a position on an ethical issue.
… work to influence government policies and laws.
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