BEHAVIOURAL AND SOCIAL ASPECTS OF DISABILITY

Chapter 47 BEHAVIOURAL AND SOCIAL ASPECTS OF DISABILITY



OBJECTIVES



• Define the key terms/concepts

• Understand the ways in which disabilities are classified

• Gain an overview of causative factors

• Recognise the impact of societal attitudes on the experience of having a disability

• Identify the community services available to support people with a disability

• Gain an understanding of what is required to competently assist in assessing, planning and providing care for a person with a disability

• Acknowledge the important role family carers play in supporting people with disabilities

• Identify health promotion strategies that serve to reduce the incidence of disability in society


KEY TERMS/CONCEPTS


choice

dignity

disability

equity and access

family carer

handicap

health promotion

impairment

inclusion

independence

normalisation

rights

segregation

social role valorisation

stigma



CHAPTER FOCUS


The disabilities that people live with range from minor to profound in severity, and many people live with multiple disabilities. They are extensively varied in type and cause and in the way they impact on a person’s functioning. Historical factors influence society’s responses to people with disabilities and, although there have been improvements in recent years, people with disabilities still face inequities in access to many things taken for granted by the general population. The current philosophy of care is based on the concepts of inclusion, normalisation and person-centred planning. The emphasis is on the importance of enabling a person with a disability, as far as possible, to live like any other person. This means that there must be services and provisions in the community that enable the person with a disability to pursue their personal interests in a positive way. There is also a strong emphasis on respecting the person with the disability, and their close family carers, as the primary authorities on what is desirable and important to the quality of life of the person with the disability. This chapter outlines the classification and causative factors of disabilities, explains the current philosophy of care and the important role of family carers. It also indicates some health promotion strategies to limit the incidence of disability in the future. The theme throughout is the need for nurses to recognise and promote the importance of successful integration into society and quality of life for all people with disabilities.




LIVED EXPERIENCE




Sheelagh, 27, has flexion deformities in both arms and legs. She also has epilepsy, is doubly incontinent and is mute. Plus she has difficulty eating and drinking. When I was told at handover that she had been admitted to our ward with an infected leg I thought, ‘This is the limit, we are too busy here to cope with someone like her’. But Sheelagh has been here for 2 weeks and I will be sorry to see her leave. Her great smile and her wicked sense of humour has lifted the mood of everyone around her, including the other clients.


Faye, 23, Enrolled Nurse



CLASSIFICATION OF DISABILITY


Disability is the outcome of an impairment or change to a person’s physical body or mental ability or the way that person is able to function. The impact of disability on a person’s life is very much related to the social and physical environment in which that person lives, on cultural responses to disability and on the individual’s psychological and physical condition. There are numerous types and causes of disability, so people with disabilities do not form a homogenous group. For example, people with learning disabilities, those who are visually, hearing or speech impaired and those with restricted mobility or other physical challenges all encounter barriers of different kinds that have to be overcome in different ways. Conditions that result in disability may be classified using two criteria: according to the type and cause, or according to the level of restriction incurred.



CLASSIFICATION ACCORDING TO TYPE AND CAUSE


This classification is made according to whether the disability is:


• Inherited: conditions genetically transmitted (e.g. Down’s syndrome, spina bifida, muscular dystrophy, short stature)

• Congenital: conditions resulting from infection during the mother’s pregnancy, or injury during or soon after birth (e.g. cerebral palsy)

• Acquired: resulting from accident, intentional injury, substance misuse or illness during life (e.g. amputation due to effects of diabetes or injury in a motor vehicle accident)

• Of unknown origin (e.g. some intellectual and behavioural disorders and mental health problems).

Clinical Interest Box 47.1 lists some causes of intellectual disabilities in children.



CLINICAL INTEREST BOX 47.1 Causes of intellectual disabilities in children**


Numerous factors can cause intellectual disability but sometimes no specific cause can be identified. An intellectual disability may be either congenital or acquired. Causes of congenital disabilities include:


• Chromosomal abnormalities; for example, an extra chromosome 21, causing Down’s syndrome; an additional X chromosome, causing Klinefelter’s syndrome

• Inherited metabolic defects; for example, decreased phenylalanine hydroxylase, causing phenylketonuria (PKU)

• Maternal infections during pregnancy; for example, rubella or toxoplasmosis; maternal malnutrition

• Chronic maternal illness such as renal or cardiac disease

• Exposure to toxic agents; for example, drugs or environmental chemicals, during intrauterine life; exposure to high-energy radiation

• Premature birth, which may result in cerebral damage; birth injuries; for example, cerebral damage due to disruption of oxygen supply

• Drug misuse during pregnancy, including excess alcohol consumption and smoking.

Acquired intellectual impairment may result from:


• Malnutrition in infancy and early childhood

• The inability of the infant’s body to metabolise, use or excrete products efficiently

• Illnesses that damage the brain, such as meningitis or encephalitis

• Injury or poisoning that damages the brain during infancy or early childhood

• Severe neglect or abuse by carers during infancy or early childhood; for example, sensory and social deprivation.

(Gething 1997; Watson 2003)



* This list is not exhaustive — it lists some of the more common causative factors only.


Disability may also be categorised as:


• Sensory (e.g. hearing or vision impairment)

• Physical (e.g. arthritis, amputation, spinal cord injury, acquired brain injury, multiple sclerosis, muscular dystrophy)

• Mental illness (e.g. dementia, schizophrenia, bipolar mood disorder)

• Intellectual (e.g. learning difficulties) (Gething 1997).

Clinical Interest Box 47.2 presents further information about intellectual disabilities.



CLINICAL INTEREST BOX 47.2 Intellectual disability


People with an intellectual disability do not have a medical illness; rather, they find it more difficult to learn than other people, and for this reason the term ‘learning disability’ is frequently substituted. The extent of learning disability varies between individuals but often it is not that they cannot learn, but that they are just slower at doing so than the average person. People with learning disabilities also need more time to process information and to respond to it. The problem may have existed from birth, or it may be the outcome of an illness or injury during childhood development or at the time of adolescence. Generally it is agreed that learning disability comprises significant below-average intellectual functioning that coexists with below-average social functioning, and that this becomes obvious before age 18.


(Gates 2007)


With the help of appropriate education, training and support, people with intellectual disabilities can and do learn many new skills. The problem cannot be cured but most can lead independent or semi-independent lives (Gething 1997). Learning disability can be mild, moderate, severe or profound. One of the most important factors in caring for people with any learning disability is never to presume that they have reached their full potential of learning.



CLASSIFICATION ACCORDING TO LEVEL OF RESTRICTION


Disability can be further categorised according to the level of restriction it imposes on the individual. The Australian Bureau of Statistics (ABS) categorises restriction in relation to limitations on schooling or employment and ‘core’ activities of everyday living (self-care, mobility and communication). Self-care activities relate to bathing, showering, dressing, eating, using the toilet and managing incontinence. Mobility relates to moving around at home and away from home, getting into and out of a bed or chair and using public transport. Communication relates to understanding and being understood by others.


The level of restriction is categorised as profound, severe, moderate or mild, and determined according to the following descriptions:


• Profound: unable to perform a core activity or always needing assistance. This would apply to a person who has quadriplegia, for example

• Severe: sometimes needing assistance to perform a core activity. This might apply to a person with a condition such as schizophrenia or multiple sclerosis, which is characterised by episodes of remission and relapse

• Moderate: not needing assistance but having difficulty performing a core activity

• Mild: having no difficulty performing a core activity but using aids or equipment because of a disability. This might apply to a person who is an amputee, walks with the aid of a prosthesis, and uses a bath seat and support rails to shower (ABS 2001).


MULTIPLE DISABILITIES


Many people experience more than one disability; for example, many people with an intellectual disability also have at least one of the following:


• Impaired mobility

• Impaired motor control of hands

• Impaired speech, hearing or vision

• Seizures

• Lack of bladder and/or bowel control

• Emotional or behavioural challenges.

A client who has cerebral palsy may need assistance with self-care and have mobility challenges. The same client may also experience sensory difficulties as a result of hearing, vision or speech impairment (Buzio et al 2002).



COMMON TERMS


It is useful to have an understanding of the different terms used in relation to people with disabilities. The World Health Organization (WHO), in its International Classification of Impairments, Disabilities and Handicaps (ICIDH) of 1980, made a distinction between the concepts of impairment, disability and handicap. The WHO definitions are as follows:


• Impairment: impairment is any loss or abnormality of psychological, physiological or anatomical structure or function. Impairments are disturbances at the level of the organ, which include defects in or loss of a limb, organ or other body structure, as well as defects in or loss of a mental function. Examples of impairments include blindness, deafness, loss of sight in an eye, paralysis of a limb, amputation of a limb, mental retardation, partial sight, loss of speech or mutism

• Disability: disability is a restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being. It describes a functional limitation or activity restriction caused by an impairment. Disabilities are descriptions of disturbances in function at the level of the person. Examples of disabilities include difficulty seeing, speaking or hearing; difficulty moving or climbing stairs; difficulty grasping, reaching, bathing, eating or toileting

• Handicap: a handicap is a disadvantage resulting from an impairment or disability that limits or prevents the fulfilment of a role that is normal (depending on age, sex and social and cultural factors) for that individual. Examples of handicaps include being bedridden or confined to home, being unable to use public transport or being socially isolated (Wen & Fortune 1999).


THE INTERNATIONAL CLASSIFICATION OF FUNCTIONING, DISABILITY AND HEALTH


In May 2001, the World Health Organization (WHO) endorsed a new International Classification of Functioning, Disability and Health (ICF). This new approach does not aim to classify people or disabilities. Rather it aims to identify and describe the full range of human functions and locate any disturbance to those functions on a continuum, regardless of the type or cause of disability. The classification identifies three dimensions in which these functions of the body operate:


1. b (body): body function and structure (physiological or psychological function and anatomical parts)

2. a (activities): activities at the individual level

3. p (participation): participation in society.

This new approach addresses the fact that these three dimensions may be affected by environmental (e) factors. The environmental component is a new and important addition to the classification process because it incorporates the context in which the disability is experienced; for example, the physical, social and attitudinal environment in which people with disabilities live their lives. Within this framework a person’s functioning and disability are viewed as a dynamic interaction between health conditions, the environment and personal factors. Using a five-point numerical scale for each area assessed, findings are recorded as either facilitators or barriers to indicate the effect they have on the individual’s functioning (Australian Institute of Health and Welfare [AIHW] 2008).



HISTORICAL BACKGROUND



INSTITUTIONAL TO COMMUNITY-BASED CARE


Many changes occurred during the 20th century that impacted on attitudes to disability all over the world. For the greater part of the last century, most people with disabilities lived in institutions. They were segregated from society and denied the rights of access to services and opportunities available to the rest of the population, such as education, work, sports and the arts. Among the institutions involved were mental hospitals, nursing homes and buildings that were designated to house people within specific disability groups. For example, there were hostels for groups of people with cerebral palsy, and for people who were blind. People who entered institutional care facilities often remained there for their entire lives.



SEGREGATION, STIGMA AND ABUSE


The segregation from the general community in the past is in part responsible for the lack of awareness and level of discomfort felt by many people towards those who are different because of a disability. It also accounts to some extent for the social stigma that continues to confront people with disabilities today. Enquiries revealed that, during the period of institutional care, many people with disabilities suffered abuse at the hands of those designated to provide care (Manthorpe 2003). Unfortunately, issues of various kinds of abuse from those associated with service provision and other members of the community continue to be a concern. In particular, those who require assistance with personal care activities such as washing and dressing are sometimes vulnerable to sexual abuse. Some people with disabilities are trained by their carers to be compliant, with the result that they are made to feel they have little control over what happens to their bodies (Sherry 2000). Nurses have a legal and moral obligation to report any instance of abuse that comes to their notice (this includes physical, psychological, emotional or sexual abuse). They also have a responsibility to promote confidence and self-assertiveness in those who are potentially vulnerable.



ACHIEVEMENTS


It was not until the United Nations introduced the Declaration of Rights of Disabled Persons in 1974 and then designated 1981 as the International Year of Disabled Persons that general awareness of this denial of basic human rights was raised globally, and a massive rethinking of attitudes towards people with disabilities was instigated. Countries all over the world were encouraged to provide equal access for people with disabilities (Disability Services Australia 2001).


A Decade of Disabled Persons (1982–1993) was declared and provided a time frame for the world to make the necessary changes to achieve equity and access for people with disabilities in all areas of life. As in many countries of the world, Australia and New Zealand responded by setting up particular government bodies and organisations to start the process of bringing about the required changes. For example, in New Zealand a Disability Strategy was implemented by the Ministry of Health (Manatü Hauora) in 2001. This involved government agencies implementing action plans to address issues for people with disabilities across all areas of concern, which are similar worldwide. People with disabilities in New Zealand are expected to maintain a key role in monitoring the effectiveness of the strategy and how it continues to be implemented today.


In Australia, many achievements have improved the lives of people with disabilities, especially over the last decade. Table 47.1 lists some examples of Australia’s National organisations that continue to work towards addressing issues concerning the rights of people with disabilities. In addition to government bodies, many disability groups developed their own organisations to air their particular concerns and fight for their rights. Many such organisations operate at a national level. In Australia these include the National Council on Intellectual Disability, the Head Injury Council of Australia, Women with Disabilities Australia, The National Ethnic Disability Alliance and the Physical Disability Council of Australia (National Disability Services 2008).


TABLE 47.1 EXAMPLES OF AUSTRALIAN NATIONAL ORGANISATIONS CONCERNED WITH THE RIGHTS OF PEOPLE WITH DISABILITIES






























Organisation Role
Australian Human Rights Commission Established in 1981 to promote and protect the rights of all Australians, including people with disabilities
Australian Human Rights and Equal Opportunities Commission (HREOC) A new commission established in 1986, with more specific objectives: to eliminate discrimination against people with disabilities and to promote wider acceptance and inclusion of people with disabilities into the community
Disability Services Australia Range of services, including daytime activity programs and support with accommodation to help bridge the gap between school and adult life
Australian Council for Rehabilitation of the Disabled (ACROD) National industry association for disability services, influencing government legislation and funding to promote quality services for people with disabilities
ACE (Action for Carers and Employment) National body representing the many state [and territory] organisations that provide employment assistance and support to people with disabilities in the regular workforce
Australian Institute of Sport (AIS) Activities include a program to coach elite athletes with disabilities
Active Australia — Australian Sports Commission Promotes active lifestyle for all Australians, including those with disabilities. Activities include an education program to train teachers and community leaders to run sports and other outdoor events suitable for people with disabilities
Australian Sport and Recreation Association for People with an Intellectual Disability (AUSRAPID) National sporting body that promotes equal access to sport and recreational programs for people with intellectual disabilities

Other organisations that promote inclusion in sporting activities include Wheelchair Sports Australia, Cerebral Palsy — Australian Sport and Recreation Federation, Disabled Wintersports Australia, Riding for the Disabled Association of Australia, Australian Blind Sports Federation, Australian Deaf Sports Federation


During the Decade of Disabled Persons, in line with other countries, the Australian Government began a review of services for people with disabilities, resulting in the Disability Services Act 1986. This Act changed the focus of care away from big institutions and into the community, into homes or smaller more home-like environments. People with disabilities could now live independently at home, with support from a range of services. They may live at home, but be dependent on the assistance and care provided by a member of their family or significant other person (family carer). They may live in a house with other people with disabilities, assisted by a paid carer who may or may not be a nurse. Others may live in special accommodation units with the assistance of a team of care staff.


For people with disabilities, being part of the community is essential to wellbeing, so this move was of vital importance. Unfortunately the demand for appropriate community-based accommodation is not always met and some people with disabilities, even some who are young, find themselves forced to live in aged-care facilities that are ill-equipped to meet their needs and fail to provide the quality of life to which they are entitled.



THE PHILOSOPHY OF INCLUSION AND NORMALISATION


Governments made recommendations and introduced reforms that aimed to ensure protection and address equity and access issues for people with disabilities, and these have been incorporated into legislation, such as the Disability Discrimination Act 1992 (Australia). The reforms include recommendations concerning equity of access to buildings, employment, education, transport and travel. They reflect the drive for the inclusion of people with disabilities, as opposed to the earlier model of segregation and exclusion. They also reflect the drive towards ‘normalisation’. Normalisation does not mean trying to make everyone fit a definition of whatever is viewed as normal. It refers to providing services for people with disabilities that are the same or as close as possible to the same as those provided for others. It means providing whatever is needed to ensure that people with disabilities can participate in the activities of normal life (Gething 1997).


The new philosophy of care and provision of services to people with disabilities adheres to the concepts of inclusion and normalisation. It emphasises the importance of enabling a person with a disability, as far as possible, to live like any other person. Inherent in this concept is the belief that a person with a disability is entitled to participate in community life and to enjoy the same rights and privileges as others. The concept of normalisation is applied to the provision of community services and to the care of people with disabilities in residential facilities.


The principle of normalisation (also known as social role valorisation) stems from Wolf Wolfensberger’s (1972) basic philosophy that socially valued roles for people with disabilities should be supported and defended because their social roles as individuals are at risk of being devalued. Having a social role includes being a member of a family, for example, son or daughter, brother or sister, aunt or uncle, parent or grandparent. There are many more social roles, and people with disabilities should be encouraged and assisted to hold them. Social roles include those associated with being:


• A home owner (e.g. rent/mortgage payer)

• An employee (e.g. wage earner, tax payer, union member, work colleague)

• A community member (e.g. library member, customer, neighbourhood watch member or voter).

The aim of promoting these roles is to maximise the rights of people with disabilities to participate in life, just like everyone else in the community.



Goals of social role valorisation


The major goal of social role valorisation is to create or support socially valued roles for people because, if a person holds valued social roles, they are highly likely to receive, or at least have the opportunity to receive, the good things in life that are available to others in that society (Wolfensberger 1992). There exists a high degree of consensus about what the good things in life are. These include, to mention only a few major examples:


• Home and family

• Friendship

• Being accorded dignity, respect and acceptance

• A sense of belonging

• An education

• The development and exercise of one’s capacities

• A voice in the affairs of one’s community and society

• Opportunities to participate in life

• A decent material standard of living

• Somewhere to live that is as home-like and normal as possible

• Opportunities for work and self-support.

Box 47.1 provides some examples of how the philosophical principles of inclusion and normalisation have been, or are still to be, implemented.



Box 47.1 Implementation of normalisation and inclusion principles


(Disability Services Australia 2001)



EDUCATION



• Significantly increased integration of children with disabilities into mainstream schools

• Arts, sports and recreation

• The Paralympics Arts Festival held in Australia in 2000 provided a forum for artists with and without disabilities to participate and display their skills across a broad range of events, including musical concerts, drama and art exhibitions

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Feb 12, 2017 | Posted by in NURSING | Comments Off on BEHAVIOURAL AND SOCIAL ASPECTS OF DISABILITY

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