Population Affected By Disabilities, Rural And Migrant Health.

Population Affected by Disabilities.

Rural and Migrant Health.

Read chapter 21 and 23 of the class textbook (attached) 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.

Guidelines: APA format word document, Arial 12 font. A minimum of 2 evidence-based references (besides the class textbook) no older than 5 years must be used, A minimum of 700 words is required (excluding the first and reference page).

Chapter 21

Populations Affected by Disabilities

Most people whose lives do not end abruptly

will experience disability.

– Nies & McEwen (2015)

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?

Definitions for Disability

Disability is the interaction between individuals with a health condition and personal and environmental factors.

– World Health Organization, 2012

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).

Table 21-1

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)

National Agenda for Prevention of Disabilities (NAPD) Model

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

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

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).

“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

“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

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

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

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

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)

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

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”

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.

Examples of Disabilities

Physical disabilities

Sensory disabilities

Intellectual disabilities

Serious emotional disturbances

Learning disabilities

Significant chemical and environmental sensitivities

Health problems

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

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.

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

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

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.

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

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.

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

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

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

Systems of Support for People With Disabilities

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”

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

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.

Knowledgeable Client

A person who lives with a disability commonly becomes an expert at knowing what works best for his or her body.

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.

Dealing With Ethical Issues

Spiritual perspectives

Quality of life (QOL) and justice perspectives

Proper use of scientific advances

Self-determination, deinstitutionalization, and disability rights

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.

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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