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.
1. Define and discuss in your own words the definitions and models for disability.
2. Discuss the difference between illness and disability.
3. Compare and contrast the characteristics of rural and urban communities.
4. Discuss the impact of structural and personal barriers on the health of rural aggregates.
Chapter 23
Rural and Migrant Health
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
Rural Populations
The largest rural population in history of United
States is now.
75% of counties are classified as rural; they contain
only 20% of the U.S. population
Number/size of rural counties are highest …
➢
➢
➢
in the South (35%)
in the Midwest and West (23%)
in the Northeast (19%)
Census data
➢
➢
➢
20% of nation’s children under 18
15% of nation’s elderly
More than 50% of nation’s poor
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
2
Rural Populations (Cont.)
Economic base is shifting
➢
➢
➢
Agriculture is the “food and fiber system”
All aspects of agriculture (core materials to
wholesale and retail and food service sectors) are
included
Poverty in rural areas greater than in urban areas
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
3
Rural Populations (Cont.)
Poverty continues to be greater in rural America than
in urban areas.
Aging-in-place, out-migration of young adults, and
immigration of older persons from metro areas.
Greater diversity among residents: a country of
immigrants historically and today.
Health disparities exist—rural population more likely
to be older, less educated, live in poverty, lack health
insurance, and experience a lack of available health
care providers and access to health care
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
4
Health Disparities Among Rural
Americans
Only 10% of U.S. physicians practice in rural areas
Ratio of physicians in rural population is 36:100,000
(nearly double in urban settings)
More often assess their health as fair or poor
More disability days resulting from acute conditions
More negative health behaviors (untreated mental
illness, obesity, alcohol, tobacco, and drug use) that
contribute to excess deaths and chronic disease and
disability rates
Higher number of unintentional injuries
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
5
Defining Rural Populations
Population size
➢
Rural = towns with population of less than 2500 or
in open country [farm/nonfarm]
Density
➢
➢
Rural = fewer than 45 persons per square mile
Frontier = less than 6 people per square mile
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
6
Defining Rural Populations (Cont.)
The Rural-Urban Continuum uses population
and adjacency to metropolitan areas
➢
Core Based Statistical Areas (CBSAs)
• Metropolitan areas = county with at least one urbanized
area of 50,000 or more people
• Micropolitan area = area contains a cluster of 10,000 to
50,000 persons
• Outside CBSAs = noncare areas
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
7
Describing Rural Health and
Populations
Differ in complex geographical, social, and
economic areas
Disparities include key indicators of health:
➢
Employment
➢ Income
➢ Education
➢ Health insurance
➢ Mortality
➢ Morbidity
➢ Access to care
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
8
Rural Health Disparities: Context and
Composition
Context: characteristics of places of
residence
➢
Geography, environment, political, social, and
economic institutions
Composition: collective health effects that
result from a concentration of persons with
certain characteristics
➢
Age, education, income, ethnicity, and health
behaviors
– Braveman (2010)
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
9
Context: Health Disparities Related
to Place
A downward spiral may exist:
➢
people leave → services are lost → tax
base becomes insufficient → fewer
services are provided → long distances
to get health care → jobs become scarce
and more people leave → the cycle
continues
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
10
Context: Health Disparities Related
to Place (Cont.)
Access to health care (#1 priority)
Fewer primary care physicians
General health services lacking
Health insurance coverage …
➢
Varies according to race and ethnicity;
age and residence (rural or urban)
➢ Influences health patterns
➢ May create financial barriers to health care
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
11
Composition: Health Disparities
Related to Persons
Income and Poverty
➢
➢
➢
➢
➢
One of the most important indicators of the health and wellbeing of all Americans, regardless of where they live.
Regional differences—highest in the South
Racial and ethnic minorities—rates among rural racial
minorities two to three times higher than for rural whites
Family composition—female-headed families have highest
rates
Children—among the poorest citizens in rural America
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
12
Composition: Health Disparities
Related to Persons (Cont.)
Health risk, injury, and death
➢
Risk factors
➢
Higher rates of obesity, smoking, sedentary
lifestyles, alcohol use, firearms usage, suicide,
vehicular accidents; lower rates of seat belt use
Age, education, gender, race, ethnicity, language,
and culture
Education and employment
Occupational health risks
Perceptions of health (gender, race, ethnicity)
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
13
Agricultural Workers
Accidents and injuries caused by:
➢
Environmental conditions
➢ Geographic isolation and working alone
➢ Use of agricultural machinery
➢ Delayed access to emergency or trauma care
Acute and chronic illnesses:
➢
Musculoskeletal discomfort, acute and chronic
respiratory conditions, hearing loss, hypertension
➢ Chemical exposure (pesticides, herbicides, etc.)
➢ Secondary conditions related to demanding farm
work
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
14
Migrant and Seasonal Farm Workers
(MSFW)
Health Disparities
➢
➢
Poorest health and the least access
Low income and migratory status
Cultural, linguistic, economic, and mobility
barriers
➢
➢
Minimal or no preventive care
• Mobile clinic sites form a central link to health services
Migrant Health Program (MHP) bases services on
enumeration of MSFW
• Migrant and Seasonal Farm Worker Enumeration Profile
Study (MSFWEPS) (2000)
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
15
“Thinking Upstream”
Concepts applied to Rural Health
Attack community-based problems at their
roots
Emphasize the “doing” aspects of health
Maximize the use of informal networks
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
16
Rural Health Care Delivery System
Health care provider shortages
➢
➢
➢
Rural shortages likely to become worse
Need to “grow their own”
Telemedicine
• Cost-effective alternative to face-to-face care
• Telehealth includes telephones, fax machines, email, and
remote monitoring
• Telemedicine permits two-way, real-time, interactive
communication between patient
and provider
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
17
Rural Health Care Delivery System
(Cont.)
Managed care in the rural environment
➢
➢
Possible benefits:
• Potential to lower primary care costs
• Improve the quality of care
• Help stabilize the local rural health care system
Risks
• Probable high start-up and administrative costs
• Volatile effect of large, urban-based, for-profit managed
care companies
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
18
Community-Based Care
A myriad of services provided outside the
walls of an institution
➢
Home health and hospice care, occupation health
programs, community mental health programs,
ambulatory care services, school health programs,
faith-based care, elder services (adult day care)
Community participation in decisions about
health care services
Focus on all three levels of prevention
An understanding that the hospital is no
longer the exclusive health care provider
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
19
Home Care and Hospice
Nurse case management and development
of local resources
➢
➢
➢
➢
Often hospital based in rural areas
Use county extension services as a bridge for
outreach services
Improve home care for these patients and provide
support for their families
A partnership between the public health nurse
and county extension service could provide
support, as well as information groups and
caregiving classes, for the important informal
provider network.
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
20
Faith Communities and Parish
Nursing
A strong sense of community,
family life, and religious faith
Integrating nursing expertise and
faith-based knowledge to provide
holistic care to members of
congregations
Involved in case management and
coordination of services
Collaboration with other
organizations to extend limited
rural community health resources
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
21
Informal Care Systems
Evolve from self-reliance and self-help traits
of rural residents
Include people who have assumed the role of
caregiver based on their individual qualities,
life situations, or social roles
Provide direct help, advice, or information
Need to identify and combine informal
services with formal systems
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
22
Rural Public Health Departments
Public health nurses are often the
core providers of public health
services in rural areas.
➢
➢
Collaboration of services is key—need
to develop partnerships with other
heath provider agencies.
Environmental health, maternal and
child health, and communicable
disease control are the three highestpriority programs.
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
23
Rural Mental Health Care
Lack of specialized mental health providers in
rural areas.
Most services provided by primary care
providers without adequate preparation or
support.
Perceived stigma prevents individuals from
seeking mental health services.
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
24
Emergency Services
Getting patients from the place of injury to the
trauma center within the “golden hour” is
frequently not possible because of distance,
terrain, climatic conditions, and communication
methods.
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
25
Emergency Services (Cont.)
Challenges faced by rural EMS systems
➢
➢
➢
➢
➢
Shortage of volunteers and lower levels of training
Training curricula that often do not reflect rural
hazards (e.g., farm equipment trauma)
Lack of guidance from physicians
Lack of physician training and orientation to EMS
Also contributing to difficult public access for
emergency care:
• Low population density
• Large, isolated, or inaccessible areas
• Sever weather
• Poor roads
• Lower density of telephone/communication methods
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
26
Emergency Preparedness in Rural
Communities
Challenges in rural areas:
➢
➢
➢
➢
Resource limitation
• Human, financial, and social capital
Separation and remoteness
• Longer response times
Low population density
• Impacts funding
Communication
• Warning systems often absent or neglected in remote
areas; burden on individuals
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
27
Legislation and Programs Affecting
Rural Public Health
Programs that augment health care facilities
and services
➢
➢
➢
➢
Community Health Centers (CHC) program
Migrant Health Clinic (MHC) program and the
Migrant Health Program (MHP)
Medicare’s Rural Hospital Flexibility (RHF) grant
program
Primary care cooperative agreements
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
28
Rural Community Health Nursing
“CH nursing along the rural continuum”
Nonmetropolitan
Areas
Metropolitan
Areas
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
29
Rural Nursing …
… is the practice of professional nursing within the
physical and sociocultural context of sparsely populated
communities. It involves the continual interaction of the
rural environment, the nurse, and his or her practice.
Rural nursing is the diagnosis and treatment of a
diversified population of people of all ages and a variety
of human responses to actual (or potential)
occupational hazards or actual or potential health
problems existent in maternity, pediatric,
medical/surgical and emergency nursing in a given rural
area.
–– Bigbee (1993), Lee & Winters (2004),
Rosentahl (2005), Williams et al. (2012)
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
30
Characteristics of Rural Nursing
Should rural nursing practice be designated as
a specialty or subspecialty area because of
factors such as isolation, scarce resources, and
the need for a wide range of practice skills that
must be adapted to social and economic
structures?
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
31
Characteristics of Rural Nursing
(Cont.)
Positive aspects
➢
➢
➢
➢
➢
➢
Ability to provide holistic care
Know everyone well
Develop close relationships with the community
and with coworkers
Enjoy rural lifestyle
Autonomy and professional status
Being valued by the agency and community
Negative aspects
➢
Professional isolation
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
32
The newcomer practices nursing in a rural setting, unlike the
more experienced nurse, who practices rural nursing.
Somewhere between these extremes lies the transitional period of
events and conditions through which each nurse passes at her or
his own pace. It is within this time zone that nurses experience rural
reality and move toward becoming professionals who understand
that having gone rural, they are not less than they were, but rather,
they are more than they expected to be. Some may be conscious
of the transition, and others may not, but in the end, a few will say,
“I am a rural nurse.”
– Scharff (1998, p. 38)
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
33
Rural Health Research
Research agendas must address:
➢ The capacity of rural public health to manage
improvements in health
➢ Information technology capacity in rural
communities
➢ Developing and monitoring performance
standards in rural public health
➢ Developing leadership and public health workforce
capacity within rural public health
➢ Interaction and integration of community health
systems, managed care, and public health in rural
America
– Berkowitz, Ivory, & Morris (2002)
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
34
Capacity of Rural Public Health to
Manage Improvements in Health
Healthy People 2020 objectives and
intervention strategies
Information Technology in Rural Communities
➢
➢
➢
➢
EHR and reimbursement
Preparedness strengthens infrastructure
Continuing education and advanced education
Telehealth impact on public health
• Skills via distance learning?
• Costs and infrastructure of IT?
• Gaps in epidemiology and surveillance capacity?
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
35
Performance Standards in Rural
Public Health
National Public Health Performance
Standards Program (NPHPSP) describe an
optimal level of performance by public health
systems regardless of location.
Used to improve collaborations among key
public health partners, educate participants
about public health, strengthen the network of
public health partners, identify strengths and
weaknesses, and provide benchmarks for
public health practice improvements
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
36
Leadership and Workforce Capacity
for Rural Public Health
IOM report (2003)—preparing public health
workforce for 21st century
CDC Public Health Improvement Initiative
(2012)—accreditation support
Medicaid impact on interaction and
integration of community health systems,
managed care, and public health
New models of health care delivery for rural
and frontier areas being tested
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
37
Chapter 21
Populations Affected by Disabilities
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
Most people whose lives do not end abruptly
will experience disability.
– Nies & McEwen (2015)
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
2
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?
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
3
Definitions for Disability
Disability is the interaction between individuals
with a health condition and personal and
environmental factors.
– World Health Organization, 2012
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
4
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).
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
5
Table 21-1
Characteristic
Definition
Measurability
Illustrations
Level of
analysis
Impairment
Disability
Physical deviation from May be objective and
measurable
normal structure,
function, physical
organization, or
development
Objective and
measurable
May be objective and
measurable
Micro level
(e.g., body organ)
Individual level
(e.g., person)
Handicap
Not objective or
measurable; is an
experience related to
the responses of
others
Not objective or
measurable; is an
experience related to
the responses of
others
Spina bifida, spinal
Cannot walk
Reflects physical and
cord injury, amputation,
unassisted; uses
psychological
and detached retina
crutches and/or a
characteristics of the
manual or power
person, culture, and
wheelchair; blindness specific circumstances
Macro level
(e.g., societal)
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
6
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.
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
7
Quality of Life Issues
Transportation to a needed service
Cost of care
Appointment challenges
Language barriers
Financial issues
Migrant/noninsured issues
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
8
Models for Disability
1. Medical model—a defect in need of cure
through medical intervention
2. Rehabilitation model—a defect to be treated
by a rehabilitation professional
3. Moral model—connected with sin and
shame
4. Disability model—socially constructed
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
9
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).
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
10
“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
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
11
“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
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
12
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
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
13
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
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
14
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
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
15
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)
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
16
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
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
17
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”
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
18
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.
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
19
Examples of Disabilities
Physical disabilities
Sensory disabilities
Intellectual disabilities
Serious emotional disturbances
Learning disabilities
Significant chemical and environmental
sensitivities
Health problems
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
20
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
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
21
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.
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
22
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
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
23
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
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
24
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.
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
25
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
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
26
Americans with Disabilities Act of 1990
and ADA Amendments Act of 2008 (Cont.)
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.
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
27
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
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
28
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
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
29
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
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
30
Systems of Support for People With
Disabilities
Figure 21-2
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
31
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”
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
32
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
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
33
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.
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
34
Knowledgeable Client
A person who lives with a disability commonly
becomes an expert at knowing what works
best for his or her body.
Knowledgeable Nurse
The nurse who has information about the
disability and the available community and
governmental resources.
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
35
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.
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
36
Dealing With Ethical Issues
Spiritual perspectives
Quality of life (QOL) and justice perspectives
Proper use of scientific advances
Self-determination, deinstitutionalization, and
disability rights
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
37
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.
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
38
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.
Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc.
39
Order an Essay Now & Get These Features For Free:
Turnitin Report
Formatting
Title Page
Citation
Outline
