Community nursing discussion

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) Community nursing discussion

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. Community nursing discussion

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. Community nursing discussion

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 Community nursing discussion

 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. Community nursing discussion

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. Community nursing discussion

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 Community nursing discussion

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, 200 1, 1997, 1993 by Saunders, an imprint of Elsevier Inc. 35 Strategies for the CH Nurse       Community nursing discussion

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. Community nursing discussion

… work to influence government policies and laws. Copyright © 2015, 2011, 2007, 2001, 1997, 1993 by Saunders, an imprint of Elsevier Inc. 39 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.) Community nursing discussion

 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 p …