CHAPTER 39 Behavioural and social aspects of disability
At the completion of this chapter and with further reading, students should be able to:
• Understand the ways in which disabilities are classified
• Gain an overview of causative factors
• Understand the historical treatment of people with disability and how this impacted on service delivery
• 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
• Identify the importance of educational supports and strategies that serve to reduce the impact of having a disability, including the benefits of early intervention
The disabilities that people live with range from minor to profound in severity. Typically, classification systems attempt to categorise people with disabilities into four main categories: mild, moderate, severe and profound. However, with more people being labelled with terms such as ‘having complex needs’ or ‘having multiple needs or disabilities’ it is difficult to easily define what is meant by a ‘disability’.
For the purpose of this chapter the term disabilities is considered as a condition that in some way hampers or hinders a person in terms of their ability to carry out day-to-day activities. The extent to which a condition hinders a person will vary from individual to individual and the general range of disabilities varies from conditions that are mild (for example, the need to wear reading glasses or use a hearing aid) to severe (for example, some forms of brain injury or spinal cord injury). However, it is important to acknowledge it is not so much the level or classification of a person’s disability that is important, but how their disability impacts on their daily life.
People living with disabilities face numerous barriers in their daily life. They may experience frequent and repetitive discrimination based on stigma, prejudice and ignorance, which is further compounded by the lack of access to appropriate services. This discrimination can also be reinforced by the type of disability the person is living with.
Historical factors influence society’s responses to people with disabilities and, although there have been improvements in recent years that can be linked to changes in legislation (Disability Act 2006 (Victoria), Disability Services Act 2006 (Queensland)) and Acts or government policies such as the Victorian Charter of Human Rights and Responsibilities, 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 and the concepts of equality and human rights. The emphasis is on the importance of enabling or supporting a person with a disability to live like any other person. For this to occur there must be supports, services and provisions in the local community that enable the person with a disability to pursue their personal interests and goals in a positive way.
Use of the principles of person-centred planning and family-centred practice means a strong emphasis on respecting the person with the disability and their close family carers and significant others as the primary authorities on what is desirable and important to the quality of life of the person with the disability.
This chapter also outlines the classification and some of the main causative factors of disabilities, explains the current philosophy of care and the important role of family carers. It also outlines some health promotion strategies to limit the incidence of or the impact of having a disability in the future. The theme throughout is the need for nurses and other allied health professionals to recognise and promote the importance of successful inclusion and acceptance into the community and to work towards improving the quality of life for all people with disabilities.
Anthony, 47, was admitted to the ward with two fractured hips. The fractures were the result of a seizure which occurred while Anthony was strapped in his seatbelt on the bus while waiting to go to day placement. These fractures were not identified by the staff who supported Anthony in his home for 3 days and they blamed his unwillingness to walk on his ‘stubbornness’.
Anthony also has Down syndrome and was labelled as determined, stubborn and as a wanderer by the staff that supported him. While the initial descriptions seemed quite negative, in follow-up conversations Anthony was also described as a charmer, good fun and someone who played a ‘mean’ flute.
At first I was concerned with the amount of time it would take to meet Anthony’s needs but we soon found that Anthony’s personality and his ability to engage the staff and the others on the ward meant he was far less intrusive or demanding than I thought he would be. I moved very quickly from seeing him as stubborn to seeing him as a very likeable chap with a wicked sense of humour; his cheekiness and laughter made potentially difficult situations a lot more relaxed. Sure, it was hard to sometimes explain things to him but when I stopped treating him as ‘disabled’ or like a ‘child’ and just slowed down what I was saying and simplified my language he seemed to get what we were talking about. Rather than bombard him with pieces of information one after the other I simply gave one piece of information or asked one question at a time. When I felt he understood we simply moved on to the next piece of information. He certainly made me think about how I interacted with everyone, not just him.
A few weeks later he was moved off the ward into a rehab service closer to his home. Not sure what happened to him after that but once he left, the ward seemed a lot quieter.
The definition of disability has evolved over time. New ways of thinking have moved the definition from being one that was medically or diagnostically focused to one that emphasises functional ability over a medical diagnosis. This makes a very important distinction between two concepts—functional limitation and disability.
Disability is therefore not something that a person has; instead, it is something that occurs outside of the person—the person has a functional limitation that is influenced by that person, their functional ability and their environment, whether that environment be physical, communication, information or social.
This new definition or way of thinking helps us to understand that disability is a matter of degree: the person is more or less disabled based on the intersection between themself, their functional abilities and the many types of environments with which they interact.
Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Thus disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives.
The Australian Bureau of Statistics (ABS) in 1999 in the Survey of Disability, Ageing and Carers: A Summary of Findings defined a person with disability as ‘any person with a limitation, restriction or impairment which has lasted, or is likely to last, for at least six months and restricts everyday activities’.
As well as a change in the definition of what constitutes a disability we have seen a change in the model of how people with disability are best cared for, supported or engaged in the service system. There has been a long struggle between competing conceptual models or approaches to defining disability: the medical model versus the social model. However, a new international definition takes the best of both models and offers a different framework for thinking about how we support people living with a disability.
In the medical model, disabled people are seen as the problem. They need to change and adapt to circumstances and there is no suggestion that society needs to change. This model located disability as a problem within the person caused by disease, trauma or other health condition that required medical intervention to cure or ‘fix’ the person. Many people with and without disabilities rejected the medical model as it focused on changing the person. This model focused on the idea that a diagnosis was a useful or meaningful measure of any individual’s experience.
The social model evolved as a reaction to the medical model and replaced the medical model’s focus on disability as residing in the person. In this model disability is caused by the barriers that exist within society and the way society is organised which discriminates against people with disabilities and excludes them from involvement and participation.
The social model focuses on disability as a ‘social construction’, recognising that one does not experience disability in isolation but in relation to the attitudes and behaviour of others. Disability was not just a condition of the person but the result of a set of circumstances, many of them at the societal level.
Progress shifted from a focus on ‘fixing’ the person with a disability to ‘fixing’ the social situation through collective action. This model emphasised human rights as a political framework for understanding disability.
In 2001 the 191 WHO member states endorsed the International Classification of Functioning, Disability and Health (ICF) which is WHO’s framework for measuring health and disability at both individual and population levels. The new ICF definition of disability, referred to as the biopsychosocial model, evolves from the medical and social model and incorporates the idea that anyone might become disabled.
This new definition of disability builds upon both of the two previous models and focuses on functioning at the level of the whole person in a social context. The person is more or less disabled based on whether the physical, information, communication and the social and policy environments are accommodating and welcoming of variation in ability.
A disability, therefore, is not something that a person has but, instead, something that occurs outside of the person—the person has a functional limitation. Disability occurs in the interaction between a person, their functional ability and the environment. This new definition helps us to understand that disability is a matter of degree: the person is more or less disabled based on the intersection between themself, their functional abilities and the many types of environments with which they interact. Moreover, the experience of disability can be minimised by designing environments to accommodate varying functional abilities and providing individualised solutions when needed.
Other key drivers for revisiting the way we think about what it means to be disabled include:
• Changing patterns in the distribution of disability in the population including evidence that socioeconomic status puts people at risk for a higher proportion of congenital abnormalities, illnesses and injuries that can lead to disability
• The emergence of new disabilities; in particular, the prevalence of disability related to an ageing world population
It is important to remember that the there are numerous types and causes of disability. However, people with disabilities do not form a homogenous group with the same needs, wants and desires. Not all people living with cerebral palsy, for example, require the use of a wheelchair and not all people with a hearing impairment use sign language. Each person’s experience is their own and as such may be completely different to others’. However, as a beginning basis for developing an understanding, 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.
This classification is made according to whether the disability is:
• Inherited; that is, conditions that are genetically transmitted. For example, Down syndrome, spina bifida or muscular dystrophy
• Congenital; that is, conditions resulting from infection during the mother’s pregnancy, or injury to the fetus during or soon after birth. For example, a hearing impairment as a result of the mother coming into contact with the rubella virus, or cerebral palsy due to birth trauma
• Acquired; that is, a disability which is a result of accidental or intentional injury. For example, an acquired brain injury due to trauma experience in a road accident or fetal alcohol syndrome from excessive alcohol consumption by the mother, or other forms of substance misuse
• Of unknown origin, such as some types of intellectual and behavioural disorders and some mental health conditions.
Disability may also be categorised as being a:
• Sensory disability such as hearing or vision impairment
• Physical disability such as arthritis, spinal cord injury or an acquired brain injury
• Mental illness or a mental health issue such as dementia or schizophrenia
• Intellectual such as having a mild, moderate, severe or profound intellectual disability. These categories or levels of intellectual disability are based on an intelligence quotient or IQ score.
For more information regarding intellectual disability see Clinical Interest Boxes 39.1 and 39.2.
CLINICAL INTEREST BOX 39.1 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.
CLINICAL INTEREST BOX 39.2 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 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.
* This list is not exhaustive—it includes some of the more common causative factors only.
Disability can be further categorised according to the level of restriction it imposes on the individual. The ABS categorises restriction in relation to limitations on schooling or employment and on ‘core’ activities of everyday living such as self-care, mobility and communication. Self-care activities relate to skills in or assistance needed when bathing, showering, dressing, eating, using the toilet and managing incontinence. Mobility relates to the ability of a person to move around in their home, such as getting into and out of a bed or chair, and their ability to move around within the community. 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:
• Mild—a person has no difficulty with self-care, mobility or communication, but uses aids or equipment
• Moderate—a person does not need assistance, but has difficulty with self-care, mobility or communication
• Severe—a person sometimes needs assistance with self-care, mobility or communication
• Profound—a person is unable to perform self-care, mobility and/or communication tasks, or always needs assistance (ABS 2001).
It is difficult to define the term ‘multiple or complex disabilities’ precisely because no one definition covers all the conditions or aspects of a person’s life or experience. However, as a starting definition a person who has, for example, an intellectual disability as well as a physical disability or delayed language could be consider as having multiple or complex disabilities. The extent or level of restriction should also be considered as well as the number of disabilities occurring simultaneously.
During the last decades of the 19th century many changes occurred in the provision of care to people with disabilities. As part of their colonial history, Australia and New Zealand inherited a model of care for people with intellectual, physical and psychiatric disabilities that relied heavily on the use of asylums or large-scale institutions. The model of care within these institutions focused heavily on the medical model. These institutions and many of the people who worked in them viewed people with disabilities as different and believed they needed to be excluded from the mainstream of society. People with disabilities were segregated from society and from their local communities and denied the rights of access to services and opportunities available to the rest of the population. People who entered institutional care facilities often remained there for their entire lives.
Australia and New Zealand have since been through the process of dismantling the asylum network and rethinking the social position of people with disabilities or those with mental illness. This process is called ‘deinstitutionalisation’.
The goal of deinstitutionalisation was not only to assist people with disabilities move into the community but also to develop new services to meet the changed needs thus created. For example, dispersed housing in the community has been shown to be a preferable alternative to large-scale institutions for improving the quality of life for people with disabilities. The process of deinstitutionalisation now forms the basis of the provision of care for people with disabilities.
For people with disabilities, being part of the community is essential to their wellbeing and to improving their quality of life. Unfortunately, the process was not always smooth, particularly for people with severe and profound levels of intellectual disabilities or those with severe behaviours of concern (Bigby 2010; Bigby & Fyffe 2010; Clement et al 2008).
The United Nations introduced the Declaration of Rights of Disabled Persons in 1974 and then designated 1981 as the International Year of Disabled Persons. This acknowledgment of people with disabilities as valid members of society began to raise the awareness of the discrimination and abuse experienced by this group.
A Decade of Disabled Persons (1982–1993) was declared and provided a time frame for the countries of the world to make the necessary changes to achieve equity and access for people with disabilities in all areas of life. New Zealand developed and implemented a Disability Strategy as did Australia and people with disabilities in both New Zealand and Australia are expected to maintain a key role in monitoring the effectiveness of the strategy and how it continues to be implemented today.
Table 39.1 lists some of the national organisations in Australia that work to address issues concerning the rights of people with disabilities.
Table 39.1 Some of the national organisations in Australia concerned with the rights of people with disabilities
| Organisation | Role |
|---|---|
| Australian Human Rights and Equal Opportunities Commission (HREOC) | A commission established in 1986, with specific objectives: to eliminate discrimination against people with disabilities and to promote 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, infuencing government legislation and funding to promote quality services for people with disabilities |
| Action for Carers and Employment (ACE) | 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 |
| 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 Australian Blind Sports Federation, Australian Deaf Sports Federation, Australian Sport and Recreation Federation, Disabled Wintersports Australia, Riding for the Disabled Association of Australia, Wheelchair Sports Australia | |
Governments frequently review and modify legislation and charters that have been written to ensure the legal protection of people with disabilities. These pieces of legislation aim to address equity and access issues for people with disabilities as well as to ensure their basic human rights. Key pieces of legislation, such as the Disability Discrimination Act 1992 (Australia), the Disability Services Act 2006 (Queensland) and the New Zealand Public Health and Disability Act 2000, ensure people with disabilities have legal protection. The Acts ensure that people with disabilities have equal access to such basic human rights as employment, education, transport and adequate healthcare. The overall goals of the legislation are to ensure the equal presence in the community and the inclusion of people with disabilities within our society.
Underpinning these acts and others such as the Victorian Human Rights Charter is the concept of normalisation or social role valorisation (SRV). The principle of normalisation stems from the work of Bengt Nirje (1969) and was further defined by Wolf Wolfensberger (1972, 1992) and identifies a 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. Normalisation does not mean trying to make everyone ‘normal’ or conform to some ideology of what is normal but instead the goals of normalisation are to provide services for people with disabilities that are the same or as close as possible to the same as those provided for others. This philosophy of care emphasises the importance of enabling a person with a disability, as far as possible, to live like any other person.
Similarly, the major goal of SRV is to create or support socially valued roles for people who have been previously devalued by society. The key principle underpinning SRV is that if a person holds valued social roles, that person is highly likely to receive from society those good things in life that are available to that society: these include 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; a decent material standard of living; at least a normative place to live; and opportunities for work and self-support.
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 Head Injury Council of Australia, the National Council on Intellectual Disability, the National Disability Services (NDS), the National Ethnic Disability Alliance, the Physical Disability Council of Australia and Women with Disabilities Australia. New Zealand has a number of supports and services including Autism New Zealand, the Disability Information Service, the National Health Committee and the New Zealand Down Syndrome Association (NZDSA).
Clinical Interest Box 39.3 provides some examples of how the philosophical principles of inclusion and normalisation have been, or are still to be, implemented.
CLINICAL INTEREST BOX 39.3 Implementation of normalisation and inclusion principles
Being inclusive in arts, sports or recreation is about providing a range of options to cater for people of all ages and abilities in the most appropriate manner possible. It is more than including people with disability in regular sport activities: it includes ensuring that an individual chooses to participate in a range of opportunities that take into account:
Drama groups such as RAWCUS have provided ongoing opportunities for people with disabilities to fully participate in all areas of theatre production including international arts festivals (in 2008) as well as working with organisations such as the Melbourne Symphony Orchestra (in 2007).
Access to employment has improved as a result of stipulated requirements and government schemes
Employers are required to modify workplaces to facilitate the employment of people with disabilities (e.g. purchasing special equipment, provide for wheelchair access) unless doing so causes unjustifiable hardship to the business
Government funding is available to assist with modifications to some business workplaces
Advertisements for jobs must not discriminate against or exclude a person with a disability from applying for the position provided that they have the ability to do the work
The Disability Standards for Accessible Public Transport 2002 (Transport Standards) are mandatory standards in Australia and are further supported by state legislation such as the Disability Services Act 2006 (Queensland). The Transport Standards cover premises and infrastructure and apply to public transport operators including bus, coach, train, taxi and aviation companies
The Building Code of Australia stipulates that buildings must be designed to facilitate access and meet the needs of people with a range of disabilities. Requirements include:
Captioning: in 1982 the Australian Captioning Centre was established to provide captioning services for hearing impaired people. Captioning on film or television provides written on-screen messages about what is being said and what sound effects or music are happening. Australian legislation requires that captions are provided for news, current affairs and prime-time television programs. In 2001 captioning was introduced in major cinemas around the country, but at the time of writing (2012) not all films were yet captioned
Many changes have occurred since the late 1990s. These have led to a more inclusive society and a society that is more likely to be accepting of all people who are different and less able than others. However, there are still significant social barriers facing people with disabilities (Atherton 2003). Despite the changes, barriers still include those relating to gaining access to equal employment opportunities, travelling safely and freely and establishing intimate relationships. Many able-bodied people still tend to feel uncomfortable interacting with people with disabilities, and such barriers may impact significantly on the way people with disabilities perceive and feel about themselves.
It is an important component of professional caring work to influence the physical and social environment in which people with disabilities live in order to break down the barriers. This can be achieved in many different ways; for example, advocating to governments, service providers or councils for changes in the way they currently provide services or for improvements such as a more accessible public transport system. The professional worker can also promote inclusion at an individual level. For example, when a person with a disability they are supporting moves to new accommodation part of the ongoing support may be to engage with the local community to raise awareness of supporting and enabling the person with a disability to complete shopping needs successfully. The role of a community nurse may involve accompanying the person with a disability on one or two visits to role-model how the sales staff should interact with the person. This may help eliminate negative or judgmental attitudes the person with a disability experiences.
Sometimes people who acquire a disability are confronted by judgmental attitudes they themselves had held towards people with disabilities. Concerns about being similarly judged may be a source of high stress in the immediate aftermath of becoming a person with a disability (Thomas 1999). The professional worker, and in particular nurses, require great sensitivity when caring for people who have a recently acquired disability.
Individual people perceive and experience disability in unique ways relative to their circumstances. An injury to the leg that results in permanent inability to bend the knee or stand for long periods of time might be a serious anxiety-provoking disability for a man who is a carpet layer by trade or someone who works in hospitality. The impact of the same disability on an elderly man who lives alone and spends most of his time watching television, rarely going out of the house, may be quite different as he may be relatively unconcerned. For many people permanent disability is an integral part of their lives, but often not the most significant aspect, and sometimes adjustment is so successful that it is an almost insignificant aspect. Therefore, people who have a disability may not consider themselves handicapped.
A disability, therefore, is not something that a person has but, instead, something that occurs outside of the person; the person has a functional limitation. Clinical Scenario Box 39.1 gives an insight into how one person sees their disability.
Clinical Scenario Box 39.1
I was born with a rare bone growth disorder that has resulted in my short stature. I am about 85 cm tall and rely on my modified wheelchair to get around. While I can walk small distances it can be time consuming for me to do so and it tires me out. I am currently studying part-time and do this without any specialised support. I have a strong support network around me but this is something that all people should have, not just those with disabilities. I go to pubs and clubs, go to the movies and listen to music just like any other 21-year-old. While at times my disability prevents me from doing some things it’s important to realise that I want to be treated equally. I’ve always been supported to give things a try because you don’t know what you can’t do until you give it a try.
The way a person adjusts to disability (or disabilities) is broadly dependent on a range of factors that include:
• Length of time the person has had the disability
• Amount and quality of support (e.g. family, carers)
• Schooling and level of education
• Own acceptance of disability
• How obvious the impairment is to others
• Whether the disability was congenital (present at birth) or acquired later
• The manner and timeliness of health service responses
• The nature of health service interventions and other supports (e.g. did they foster dependence or promote independence within the client?)
• Previous exposure to or experience with people with disabilities
• The attitudes and behaviour of others
• Coping efficacy (e.g. did the person feel confident in dealing with their disability?)
• Emotional reactivity (e.g. did the person feel they were dependent on others for support?) (Gertrudis et al 2001; Gething 1997; Gignac et al 2000).
It is important to recognise that adjustment to disability may be short and relatively uncomplicated, but commonly it can be a long and difficult process involving extensive rehabilitation and a process of grieving (see Ch 38). While individuals respond differently, it is helpful to recognise that in the initial period after illness or accident, when clients are first facing disability, they may be extremely stressed. This stress may result in behaviours that the person does not usually display, including:
• Hostility or anger at themselves, their families or primary carers and the professional staff who aim to support them
• Rebelliousness (e.g. refusing care, refusing to get up or shower)
• Refusal to socialise, shunning visitors, even close family and friends (this may be due to embarrassment at changed appearance or abilities, or fear of rejection)
• Depersonalisation (avoiding or disowning self or parts of self, which may be demonstrated by a refusal to acknowledge, talk about or look at an altered body part such as a stoma, a stump or a burned area)
• Refusal to participate in activities (Thomas 1999).
Nurses may provide care for clients with disabilities and their carers in any setting in which care is provided. These include:
Nurses may encounter persons with a disability who are hospitalised for totally unrelated reasons; for example, a client who has epilepsy but is hospitalised because they need an appendicectomy. Others may be in care to provide respite for a family carer (e.g. a client with multiple sclerosis or perhaps dementia) and some may have only just acquired the disability (e.g. hemiplegia as a result of a cerebrovascular accident or a spinal cord injury due to road trauma). This means that nurses need to adapt the ways they communicate with and respond to clients according to the type of disability and the specific circumstances. Clinical Interest Box 39.4 provides some guidelines to aid the nurse caring for clients with disabilities. Sometimes people with disabilities demonstrate behaviour that even experienced nurses find challenging to manage (Emerson 2001; Mottram & Berger-Gross 2004; Newman & Summerhill 2003). There are often complexities involved in managing challenging behaviours—now more commonly known as behaviours of concern, and it is recommended that nurses refer to texts that deal specifically with this issue to enhance their knowledge and expertise. Chapter 37 provides some information on managing challenging behaviours.
CLINICAL INTEREST BOX 39.4 Suggestions to aid relationships between nurses and clients with disabilities
• In many cases the client and the family carer will know more about the disability than the nurse
• The person with a disability is the same as anyone else, just with particular needs associated with that disability
• Many difficulties that the person faces are likely to be more to do with societal attitudes than the disability itself
• It is best to concentrate on what the person can do rather than on the things they are unable to do
• It is best to let the person guide how and at what pace things should be done
• Self-responsibility should be handed over to people with disabilities as soon as they are ready
• Adapt your pace of communication to suit the other person and, when communication ability is impaired, allow time for responses
• Speak directly to the person—do not use another person (e.g. family carer) as a go-between
• Monitor how much input into the conversation the person with the disability has—be careful that you don’t dominate the conversation
• Take the person’s lead, pick up on what the person may prefer to talk about, or finds interesting or important. Be alert to signals and act on them; for example, in a person whose speech is impaired, eye movement towards an object may indicate that the object is wanted
• Ask the person what help is required; avoid automatically doing things for the person; do not insist on helping and do not assist without asking first
• Ask if unsure of how to behave towards the person; for example, if the person has an arm missing or has uncontrolled limb movements, how do they prefer you to place meals or other objects?
• Respond with understanding and good will if the person knocks something over or spills something; for example, a glass of water. Humour can also be helpful and, when used effectively, can minimise embarrassment
• Do not be overly concerned if you say something that feels inappropriate; for example, saying ‘Do you want to hop into the shower now?’ to a person who has a right leg amputation. Having a disability does not remove a person’s sense of humour, and humour can relieve discomfort for both nurse and client
• Whatever the disability, always use age-appropriate language; for example, speak to the adult person with intellectual or cognitive impairment in the same manner as you would any other adult (Ch 31 provides more information on communicating with people who have hearing, visual or cognitive impairment)
• Do not assume that the person in a wheelchair needs assistance
• Do not try to move the person or wheelchair without first gaining permission
• Do not hold on to the wheelchair unnecessarily. It is part of the person’s body space and the person cannot step away from you
• Ensure you are familiar with how a wheelchair is pushed and manoeuvred before taking a person in a wheelchair out and about. This includes knowing how to get it up and down steps, how to tip it backwards, how to use the brake and how the armrests are removed (never lift a wheelchair by the arm rests—most are removable) and how it folds up. It is a useful exercise to practise pushing and manoeuvring a wheelchair with a person who does not have a disability sitting in it
• Reinforce that people with disabilities have the same rights as other people in their community and in society as a whole
• Reinforce that they have the right to have a say in all decision making that concerns their lives, their treatment and their general wellbeing
• Reinforce that it is appropriate to be assertive and persistent in defending their rights, and to be firm but polite when defending their rights to things such as access, independence or privacy
• Feel comfortable about asking for assistance when needed and avoid apologising for what they cannot do
• Feel comfortable in communicating in whatever way is appropriate for them, and about having to repeat things that are not understood or about asking other people to repeat or re-explain things that are unclear
• Understand that many people have little knowledge of disabilities (e.g. the realities of cerebral palsy), and be tolerant of and polite to people who are unsure of how to respond to them in social situations, or who offer help that is not needed
• Be prepared for times when they may feel anxious or depressed. Reinforce that such feelings are common and that help is available should they need it
• Try to create opportunities to instigate the person’s contact with positive role models of others who have a similar disability. For example, it may be encouraging to a client who has recently become visually impaired to talk with a person who has adapted successfully to vision impairment. It may be helpful for people who are hearing impaired to meet with deaf people communicating avidly with sign language.
Whenever a person with a disability is encountered within the healthcare system, a careful individual nursing assessment must be undertaken. This should always be from the perspective that clients are people first, and that their disability is second. The importance of client-first language is paramount in providing professional care. Person-centred planning is based on respect for the dignity and desires of the person with the disability and on the acknowledgment of the family carer and the person with the disability as the experts in relation to identifying needs and appropriate interventions. Person-centred planning incorporates the principles of inclusion and normalisation and involves helping to break down community barriers so that the person can participate in life as normally as possible and can achieve personal goals.
As explained previously, current attitudes towards the care of a person with a disability reflect the belief that such a person is entitled to the same rights and freedom as any other person in society. Regardless of whether an individual with a disability is able to remain at home or lives in other accommodation, the overall goal of care planning must be to enable the achievement of as much independence and autonomy as possible, and to maximise the full potential of that person’s capabilities.
The Federal, state and territory governments in Australia fund a range of services for people with disabilities and their family carers, including:
• Family support services such as respite care and community-based respite care
• Domiciliary support, such as help with cleaning, house and garden maintenance and Meals on Wheels
• Home modification and provision of equipment
• Independent living skills programs
• Pre-vocational training, vocational placement and employment support
• Social support, including recreational and culturally specific activities
• Community-based accommodation and support; for example, support available to people with a disability living at home or in other accommodation in the community
• Counselling in the areas of sexuality
• Education and training for carers, clients and their families
• Behaviour management programs and specialised training in this area
• Specialist assistance from professionals such as psychiatrists, psychologists, speech therapists and occupational therapists
• Case management (both short and long term), providing individual support, advocacy and monitoring
• Client’s disability allowance
• Carer’s allowance (small regular financial payment to assist with additional expenses).
These services aim to assist people with disabilities to achieve as much independence as possible by promoting and supporting family and community acceptance and involvement, by providing sufficient support services and by offering a range of accommodation options.
As highlighted earlier, there is now much greater acceptance of the importance of family living and of participation in community life than in earlier times. The wellbeing and the quality of life of people with disabilities depends on recognition and acknowledgement of their rights, promotion of community acceptance and the implementation of programs that appropriately promote education, provide training for employment, develop independent skills in activities of daily living and promote enjoyment of life. Professional support is primarily directed towards enabling a person with a disability to achieve as much independence as possible, through interventions and by providing support that promote independent living and vocational capacities. Planning and implementation of appropriate educational and vocational programs is performed on an individual basis and takes into account any associated physical, sensory or emotional effects of the disabilities.
Basic principles that should guide the provision of services include:
• A collaborative approach between health professionals: the client and the family should be consulted to decide what is needed, what will be of most help and how that help should be implemented for maximum benefit
• Identification of client and family strengths and capabilities
• Recognition and validation of emotions, needs and concerns.
These principles should be kept in mind when assessing, planning, implementing and evaluating care.
Decisions about the most appropriate plan of care are made after individual assessment. A multidisciplinary approach to assessment is generally required. Depending on the age and type of disability the person is experiencing, assessment may involve:
• Maternal and child health nurses
• Nurses specialised in disability and rehabilitation nursing
• Other support workers including residential support workers or community-based workers.
The purpose of assessment is to identify the abilities, strengths and specific needs of an individual so that appropriate care may be planned. The overarching goal is to ensure support that allows the person to live life as near as possible to the life they desire. The assessment process should consider all aspects of the person’s life including:
• Spiritual and emotional support needs
• Recreation and leisure needs
The team may assess the individual using a variety of methods, such as observation, interviewing and testing. A checklist may be used to help identify activities that can be performed independently by the individual, and those for which assistance is required. When assessment is complete, the team, collaboratively with the client or family carer, can plan the care to be implemented following the principles of person-centred planning.
The extensive types of disability, and the fact that many clients will have multiple disabilities, means that after the assessment process nurses may determine a broad range of nursing diagnoses for each individual client. Clinical Interest Box 39.5 identifies some common issues that need to be considered for a nursing assessment of clients with disabilities. The list is by no means exhaustive and not in any particular sequence. The degree of relevance and nursing response will vary with each client and each situation.
Using the information obtained from the assessment process, a program is developed to meet the client’s needs. Central to development of a program is the concept of helping the individual to achieve as much independence as possible. The stages of the program include:
• Clearly identifying the client’s capabilities
• Establishing common goals and objectives
• Identifying and prioritising skills and abilities to be developed
• Determining the most effective teaching strategies
• Determining the most effective interventions to meet social, educational and other needs.
For any program to be successful the goals and the skills to be accomplished by the individual must be clearly expressed and understood by the client, family carers and all the team members. Based on the principle that people with disabilities have the same rights as the rest of the community, the plan of care should focus predominantly on what the person can, rather than cannot, do. The goals of care relate to helping people to develop the following skills and abilities:
• Take part in activities and experiences that improve their quality of life
• Develop practical skills to live as independently as possible
• Develop the interpersonal skills necessary to form relationships
The concept of active support is an important component in the development of assessment plans. Active support was developed as a way of helping people with disabilities to engage in meaningful activity and relationships as active participants. Rather than doing things for people or to people, staff or support people working with people with disabilities use active support to enable these clients to take part in the activities of everyday life. This approach involves more than just providing opportunities and direct assistance for activities; it focuses on supporting people to live the lives they want to live, doing the things they want to do and respecting their decisions.
These principles and goals of care are the same regardless of age or where a client with a disability resides. Clinical Interest Box 39.6 provides principles that govern care in a residential setting.
CLINICAL INTEREST BOX 39.6 Principles of care in a residential setting
• Encourage and teach the individual to be as independent as possible
• Allow the individual to exercise choice at every possible opportunity
• Recognise the individual’s right to privacy
• Establish routines that promote a sense of security
• Provide regular and frequent opportunities (e.g. daily/weekly) for participation in social and leisure activities
• Provide regular and frequent opportunities for interaction with others
• Provide a physical environment that is as much like a comfortable home as possible
• Ensure that the environment is equipped with features that facilitate independence; for example, handrails, ramps, access to benches and equipment, adequate lighting
Family carers of people with disabilities, particularly when the disabilities are multiple or profound, are often expected to provide care and support 24 hours a day. Unlike nurses, family carers do not get breaks between shifts or get to go home after finishing their work. Even when respite is available, the responsibility is permanent, 7 days a week, often lifelong and often falling primarily on one family member (Starke 2011).
For many the responsibility begins with the birth of a child with a disability. Parents in this situation are faced with an unplanned lifetime of giving fulltime care that interferes with their ability to give as much time as they would like to their other children or to conduct their lives as previously planned. They are faced with coping with the situation as they deal with the grief associated with lost expectations about their baby and the future. For others it begins at the stage of life when caring responsibilities are expected to reduce; for example, the parent caring for an adolescent offspring who has an acquired brain injury or has developed serious mental illness. For many it begins in older age, when caregiving responsibilities are usually over and when personal health or stamina may be declining; for example, a spouse caring for a partner with Alzheimer’s disease.
Families caring for adolescents face particular challenges impacting on daily life: internal factors such as changing family roles and relationships and external factors such as service discontinuity, where forfeiting of a desired option may be necessary. Also, teenagers with intellectual disabilities (ID) have significantly more health problems than the rest of the population and many encounter difficulties accessing the services they need (Bhaumik et al 2011). Challenges such as these mean that family routine in the adolescent years is dynamic rather than static. Families use multiple strategies to accommodate these challenges, which are underpinned by their beliefs, values and resources. Professionals working with families caring for an adolescent with disability need to be aware of these in order to support families effectively to sustain a meaningful family routine during the adolescent years (Schneider et al 2006). Some professionals find the families they support considering or actually relinquishing the care of the person to the state (Nankervis et al 2011). The professional must ensure the family has an understanding of the ramifications of this decision.
Whenever the carer role begins, it is often associated with great lifestyle changes and many losses, including:
• Loss of the ability to continue with a career or paid employment
• Loss of income and financial security
• Loss of status and socialisation that often accompanies a paid work position
• Lost hopes and dreams of what the future will bring
• Loss of freedom and socialisation
• Loss of a normal or expected relationship (e.g. loss of companionship or a sexual partner when physical and cognitive functioning are profoundly affected) (Funnell 1998).
Despite the seriousness of their situation, many people caring for family members with disabilities gain pleasure, a sense of satisfaction and feelings of personal fulfilment from the role they have undertaken. Clinical Scenario Box 39.2 gives a carer’s perspective.
Clinical Scenario Box 39.2
Arthur, 75, cares for his wife, Meg, who has motor neuron disease. Arthur retired from work and with family support moved to Queensland about 5 years ago where it was felt the climate would help Meg’s condition. At first it was a hard move as his family returned to Melbourne and Arthur had to cope on his own. He has gradually adjusted, with the help of service providers, to manage Meg’s condition which has deteriorated; she is now paralysed and can only move her head. Swallowing food and drinking is becoming a real issue with concerns around Meg choking. She is no longer continent. Arthur sponge bathes her every weekday, assists her with toileting and all meals (which he prepares himself) and takes her out with her wheelchair though this is getting harder to do.
Arthur admits to getting very tired at times but has no regrets—he feels the role of carer has improved him as a person. ‘I am a different person because of caring for Meg; we have been blessed with three lovely children, nine fantastic grandchildren and now the great-grandchildren are on the way. We have had over 50 years of marriage,’ he says. ‘It’s shown up different areas of my life that needed changing, like my impatience and quick temper. I’ve had to change and this has been hard. I think I’m a much more caring person, I can put myself in other people’s situations, which I didn’t always do before.’
When Arthur and Meg were offered more professional assistance with Meg’s hygiene and meals, Arthur at first declined, although Meg expressed concern for him. Arthur responded, ‘I want to do it—I feel I am repaying Meg for all the times I wasn’t there for her and the kids in the early part of our marriage … and I feel good because I do things for her I never thought I’d be able to do, and I’ve earned her love and respect and the respect of my kids now.’
It is essential that nurses and other professionals acknowledge and credit family carers as having the primary care giving role, and carefully assess how to best enable and facilitate their ongoing coping abilities. Some family carers prefer to cope independently, some prefer a regular visit from a nurse or other team member; others may view such visits or other interventions as an invasion of privacy (Funnell 1998; Starke 2011). Some simply need the reassurance of having a contact to call when information or assistance is needed. Others need a significant amount of support when supporting people with complex health needs or in managing challenging behaviours (Emerson 2001). The amount and type of support may vary in terms of its frequency or intensity but whenever and whatever services are implemented they should be determined in collaboration with the primary carer. There are key times when additional services or support may be needed. These include:
• At the time of diagnoses or identification of a disability
• During the care of a preschool child with a disability
• When educational needs and the person’s potential need to be determined or reviewed
• Before transition from child to adult services or from adult to aged-care services
• When the primary carer is unwell
• When the client’s general functioning declines and care needs increase (Wake 2003).
The opportunity for primary carers to take short-term breaks through the use of respite services should be integrated into care planning. Even though such breaks do not resolve the stresses and strains of full-time caring, they may have a positive influence on the ability of the primary carer to continue the carer role in the long term. However, some family carers feel guilty about putting a dependent loved one into respite care, and choose not to take much needed breaks. Even so, demand for respite services sometimes exceeds supply (Funnell 1998; Nankervis et al 2011).
One of the significant issues facing primary carers is what will happen to the dependent loved one if they should get sick or die. This is particularly worrying for parents who have spent a lifetime caring for dependent children with limited service support. As resources and services experience higher demand with shrinking budgets, families often carry the added burden of planning for ongoing care, in particular in the area of accommodation, because of the ongoing shortage of appropriate accommodation for people with disabilities.
Whenever possible, clients, families and carers need to develop a plan in advance to ease this worry, but this can be a complicated matter. The current shortage of suitable accommodation options for young persons already results in young people with disabilities living in aged-care facilities. This situation is not likely to improve in the near future. In upcoming years the current older generation of family carers will need to relinquish care of adult children with disabilities and thus demand for appropriate accommodation and care will increase significantly. There is a very real possibility that, unless action is taken now, many people with disabilities will be left without a suitable home and without appropriate care and support. It is essential that professionals such as nurses continue to advocate for appropriate resources for people with disabilities.
Caring for people with profound or multiple disabilities is challenging. The nurse needs to make an informed assessment of needs, plan sensitive and timely interventions and demonstrate respect for the client. It is also of vital importance the nurse acknowledges and shows empathy for the role of the primary carer. These attributes are at the heart of excellent nursing care for people with disabilities.
While much can be done to improve the lives of people with disabilities, it is equally as important to minimise disability in the community as much as possible. Several health promotion strategies have been implemented with the aim of reducing the number of people who are born with or acquire a disability (see Clinical Interest Box 39.7).
CLINICAL INTEREST BOX 39.7 Strategies for health promotion/disability prevention
• Vaccinations: promoted to prevent serious illness that can lead to a range of impairments; for example, vaccination against the rubella virus is important because maternal rubella in the early stages of pregnancy can cause congenital abnormalities
• Road safety campaigns and ‘Swim Safe Stay Safe’ campaigns: aimed to reduce the number of disabilities caused by road, diving and near-drowning accidents
• Safe-sex campaigns: aimed to reduce the incidence of AIDS and other disabling disorders
• Safety in the workplace and safety in the home programs: aimed to reduce avoidable injuries to employees, children and adults
• Anti-smoking campaigns: aimed to reduce the physical impairment caused by damage to the lungs and other organs by smoking
• Education of pregnant mothers about the dangers of smoking to the unborn infant: aimed to reduce the risk of brain damage and intellectual disabilities in children. Education programs for pregnant mothers have also focused on the importance of healthy nutrition and the elimination of alcohol and other drugs
• ‘SunSmart’ campaigns: aimed to reduce disability caused by skin cancer
Prevention of disability needs to be a priority. Currently there are an estimated 3.9 million people in Australia (20% of the population) who live with one or more limitations to functioning (AIHW 2008).
It is difficult to determine exactly how many of these disabilities were preventable. According to the AIHW, in 2007 10 000 people in New South Wales alone acquired a brain injury (AIHW 2007). This information puts the need for preventive educational programs into perspective. Brain injury is mostly acquired through:
• Road-, sport- or work-related injuries
• Misuse of drugs, including alcohol
• Lack of oxygen from near drowning or severe asthma attacks
Many of these causes of acquired brain damage, and some other congenital or acquired disabilities, could be minimised by health and safety education programs and/or programs that promote and support a healthy lifestyle. An important role for nurses, particularly those working in community settings, is the prevention of additional illness in people with disabilities by ensuring their ongoing access to routine health screens. This is sometimes difficult, perhaps due to a physical disability preventing a person achieving the correct position for a particular health screen, such as a mammogram or a Papanicolaou test (Pap smear) or a person with an intellectual disability giving consent for these procedures. This does not mean that health screening should be put in the ‘too hard basket’. Consultation between medical officers, radiographers, physiotherapists, nurses and especially the person with the disability is needed to establish a way in which tests can be successfully managed.
A disability may be inherited, congenital or acquired, and the impact of the disability on a person’s life varies between minor and profound. Many people live with multiple or complex disabilities. The meaning of impairment is unique to each individual.
The focus of service provision for persons with disabilities has shifted from institutional to community based, with many people with disabilities living independently or semi-independently and many living at home supported by family carers and other paid professionals. The philosophy of care is based on principles of inclusion and normalisation, recognising that people with disabilities are entitled to the same rights and freedoms as everyone else. Therefore the goal of professional carers is to assist people with disabilities to live as much as is possible like any other member of the community. This involves ensuring equality of access to education, employment, transport and travel, leisure activities and relationships with others and, while a range of services are working to achieve this, people with disabilities still face stigma and social barriers.
There is a wide and varied range of settings and situations in which nurses care for people with disabilities. In this chapter some guidelines for promoting recognition of their rights and providing sensitive and appropriate care have been provided. A multidisciplinary approach to providing services is important, and consultation with the client and family carer is essential in the assessment process and in decisions about the supports to be implemented. Nurses and other professional service providers are advised to work with clients from the perspective that the person with a disability is a person first, and the disability is second, and to acknowledge and respect the vital role that family carers play in supporting people with disabilities living in the community.
Nurses are recommended to read more widely to expand understanding of the basic concepts raised in this chapter and to develop empathy and understanding of the many needs and issues that concern people with disabilities and their families.
Grace is 42 years old. She was born with a brain injury as a result of birth trauma. Her parents have been her primary carers since birth. Grace requires a high level of physical assistance. For example, every day of her life her father has lifted her from her bed in the morning and carried her to a recliner chair in the lounge and later returned her to bed the same way. Each day her mother has prepared the food and assisted Grace with her meals. Because of the difficulties Grace has with chewing and swallowing her food, mealtimes have always been a lengthy process. Personal care routines such as showering and dressing are provided by her parents. Sometimes Grace resists and yells out. Grace is incontinent of urine and her parents fit her with disposable pads every morning and change them frequently during the day. They take care of the pressure areas that sometimes develop.
After leaving her special developmental school at 17 years Grace began attending a day centre 3 days each week. She was taken there in a community bus specially designed to accommodate her wheelchair. Activity at the centre revolved mostly around the staff meeting the hygiene, toileting, medication, mobility and nutritional needs of the two dozen or more people with severe or profound disabilities who also attended. The staff reported that Grace spent a lot of her time there simply dozing.
On the days she is at home Grace has many things surrounding her that give her pleasure. She has a box containing many different pieces of material. She enjoys the feel of the different textures, especially the velvet and silk. Other times she holds on to colourful toys and, although she has a profoundly limited vocabulary, she is able to express her pleasure in her favourite television programs and music. Grace also enjoys being with her mother in the kitchen and sitting on the outside veranda watching people walk past the house. Many of the neighbours greet her cheerfully.
Grace’s parents have been anxious for some time about their future ability to care for her, but now Grace’s mother has fallen and fractured her hip. Her father is exhausted and cannot manage to care for Grace alone. Grace has been admitted to a residential care unit, where most of the residents are elderly and have dementia. There is nowhere else available at the moment.
With a group of colleagues, consider and discuss:
1. How Grace’s mother and father may be feeling about this situation. What could be done to help them?
2. The impact of this move on Grace. How might she be feeling? How can staff help ease the transition to her new accommodation and situation?
3. To help with this situation, what other supports could you refer both Grace and her parents to?
4. What are Grace’s rights? What are the risks to those rights being infringed?
5. What can staff do to ensure that her rights are not infringed?
6. How can staff create a stimulating and pleasurable environment for Grace?
7. What does social role valorisation or normalisation mean to Grace?
1. Identify the ways in which disabilities may be classified.
2. Define the terms medical model, social model and biopsychosocial model of disability.
3. Define the levels of restrictions that are used to categorise the assistance needs of people with disabilities.
4. Explain what is meant by the terms social role valorisation and normalisation.
5. Identify the types of support services available to people with disabilities living in the community.
6. Identify six (6) potential areas of loss that families may experience while caring for and supporting a person with a disability.
7. Identify the main causes of acquired brain injury and outline possible strategies that could reduce the impact of living with an acquired brain injury.
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