Current disability policy in Australia espouses a multidimensional approach that includes assessment of the need for support as one of the components and classifications of disability (Australian Institute of Health Welfare, 2003). The support approach assesses the specific needs of an individual and then recommends strategies, services and supports that will optimise the functioning of that person. AAIDD recommends that an individual’s need for supports be analysed in at least nine key areas, such as human development, teaching and education, home living, community living, employment, health and safety, behaviour, social activities and protection and advocacy.

There are also difficulties in defining what exactly is meant by the term ‘physical disability’. The ICF recognises that most human bodies function in a standard way and that for some individuals there are limitations in this standard operation. The ways in which these limitations affect the individual going about the activities of daily living are also recognised. The context of the individual’s living arrangements is also considered by the ICF when determining the degree of disability that is being experienced by the individual (WHO, 2001). When all of these factors are taken into consideration, the definition of physical disability endorsed by the ICF is a condition where a person experiences significant deviation or loss in their body function or structure that results in physical limitations in their physical activity that may affect their participation in life, depending on the context within which they live.

In Australia, another way of categorising disabilities is by ‘disability groups’. These groups, such as ‘intellectual disability’ and ‘physical disability’ are based on underlying health conditions, limitations in activity and participation and related to environmental factors. They are recognised in the area of disability as well as in legislative and administrative contexts. Australian disability administrators, peak bodies, people with disabilities and service providers use disability groups as a basis for describing groups of people with similar experiences of disability and patterns of impairments, activity limitations, participation restrictions and related environmental factors (Australian Institute of Health and Welfare, 2003b).

An issue that further complicates the accurate definition of developmental disability is that of dual diagnosis. People with intellectual disability can experience the full range of mental health problems and the estimated prevalence varies greatly from study to study. Hamilton and Keane (1996) reported that the prevalence can be influenced by ‘age, living situation, and degree of disability of the population studied; the methods by which the populations are obtained; and the definitions of psychiatric illness and emotional disturbance employed’ (p. 218). Many studies have found high prevalence rates, which is not surprising when commonly encountered deficits in areas such as communication, processing skills, cognitive functioning and social skills are considered.

Mental disorders were largely overlooked in people with intellectual disability until Reiss conducted a series of studies demonstrating this phenomenon of ‘diagnostic overshadowing’ in the 1980s. Diagnostic overshadowing occurs when problem behaviours are attributed to the intellectual disability, leaving the genuine mental disorder undiagnosed (Reiss, 1994). Even with the increased awareness of this issue, there continues to be difficulty distinguishing between specific maladaptive behaviours and diagnosable psychiatric disorders in individuals with intellectual disability. Difficulties are compounded by inappropriate residential placement and a notion of service provision and staff development that is still developing. Day and Dosen (2001) state that there is a need for comprehensive treatment programs integrating medical, psychotherapeutic, behavioural, cognitive, milieu and pedagogical treatment options. They suggest a model based on four dimensions: biological, psychological, social and developmental dimensions.

People with intellectual disability are entitled to access all specialist services as needed. Wallace (2002) argues that many people with intellectual disability and a concurrent mental health problem are not diagnosed and therefore left to cope as best they can without appropriate care.

BEHAVIOURS THAT CONTRIBUTE TO THE DEVELOPMENT OF DEVELOPMENTAL AND INTELLECTUAL DISABILITY

CAUSES

For many people with disability, especially those with an intellectual disability, the precise cause remains uncertain. There have been many attempts to classify the causes of disability and the number of different systems used reflects the ambiguous nature of aetiologies, which can be affected by the environmental and personal attributes of the people involved.

The system of classification chosen here relates to the timing of the primary causal factor.

PREVENTION

By identifying and understanding the causes of disability wherever possible, appropriate supports and actions can be provided to limit or reduce the risk factors. We can approach the prevention of disability from the perspectives of primary, secondary and tertiary prevention.

Primary prevention is aimed at preventing disability from occurring. Strategies employed to reduce the chance of disability include the promotion of health and nutrition, adequate education about pregnancy and antenatal care, genetic counselling programs, government campaigns (e.g. anti-smoking campaigns), immunisation programs and legislation requiring the wearing of seat belts in cars and bike helmets when riding bikes.

Secondary prevention is aimed at limiting the impact of a disability once detected. Examples of this type of prevention include early intervention education programs for children with disability and the commencement of diet restrictions for children who have specific disorders of metabolism (e.g. phenylketonuria).

Tertiary prevention is aimed at reducing the impact that an established disability has on an individual by providing adequate services to support the individual, for example individually designed employment programs, pension benefits, provision of access ramps.

CASE STUDY 7.1

Sally is 5 years old and the only child of Mr and Mrs P, aged 35 years and 28 years respectively. Sally has spastic diplegia, with epilepsy and a mild developmental delay. She attends the local school, which has a special needs unit attached. Sally has some of her classes in the special needs unit with other children who have disabilities. Many classes are integrated with mainstream students and she has settled into school routine well. Mrs P works part-time and Mr P works full-time and is fully involved with helping his wife care for Sally.

Sally is learning to communicate by using a communication board. However, it takes her some time to spell out what she wants to say and she finds this frustrating. She uses an electric wheelchair, but requires assistance with toileting, feeding and dressing. Sally is awaiting admission to hospital for placement of a tympanostomy tube following unsuccessful treatment with antibiotics for recurrent otitis media.

Sally’s parents are anxious to ensure that she will be looked after appropriately, as they experienced problems during a previous admission to hospital. On that occasion, Sally returned home well under her usual weight and quite distressed with the nursing care that she received. They are especially concerned about nutrition and fluid intake. Sally needs assistance with feeding and drinking as she has difficulty chewing and swallowing. Sally’s parents are concerned that when they aren’t at her bedside she won’t be fed and cared for adequately as she is unable to communicate verbally.

ALTERED MOBILITY AND FATIGUE

The necessity for disability to be considered within the context of the environment, individual factors and the requirement for tailored supports has been presented previously. Adaptive behaviour can be described as the collection of conceptual, social and practical skills that people have learned so they can function in their everyday lives. Some examples of practical skills include personal activities of daily living such as eating, dressing, mobility and hygiene requirements.

It is important for people with disabilities to be as independent as possible in their activities of daily living since their independence contributes to both their own self-esteem and society’s perception of their worth as a person. The autonomous performance of daily living activities empowers individuals and assists them to be included and valued in the community. Despite an increase in public awareness about the difficulties people with disabilities face in their everyday life, hardships continue. Hoenig, Landerman, Shipp and George (2003) conducted a study to identify factors associated with activity restriction among wheelchair users. They found that mobility limitations and environmental barriers were associated with restricted participation in diverse activities outside the home. With regard to the case study on page 111, the school that Sally attends needs to ensure wheelchair access to all areas used by students to enable her to be included in all activities.

A number of screening tools have been developed to assess the adaptive behaviours of people with developmental and intellectual disabilities. These include the Australian Developmental Behaviour Checklist (DBC), the Adaptive Behaviour Scale and Scales of Independent Behaviour. The DBC is commonly used in Australia at present and consists of a 96-item checklist that is completed by parents or other primary carers, reporting behavioural and emotional problems in children and young people with intellectual or developmental disability over a six-month period. The items were independently derived from a study of the medical files of 7000 children with an intellectual disability and adolescents seen in a developmental assessment clinic.

The DBC provides scores at three levels.

1. Total behaviour problem score—an overall measure of behavioural and emotional problems. The DBC can also detect clinically significant levels of overall behaviour and emotional disturbance. Receiver Operating Characteristic analysis has shown that a total score of 46 or greater indicates clinically significant levels of behavioural and emotional problems.

2. Five sub-scales (derived from factor analysis)—disruptive or antisocial behaviour, self-absorbed behaviour, communications disturbance, anxiety problems and social relating problems.

3. Individual behaviour items—indicates the prevalence and severity of individual symptoms (Developmental Behaviour Checklist, Monash University) http://www.med.monash.edu.au/spppm/research/devpsych/dbc.html

Sally needs to be taught as soon as possible to feed and dress independently to assist her being accepted into mainstream society. Her school colleagues would have already mastered these skills and it is crucial that she become independent in these basic skills.

BODY IMAGE

Body image or self-concept may be defined as a relatively stable set of perceptions that individuals hold about themselves. Self-esteem is the degree to which people regard themselves favourably. Both body image and self-esteem begin to develop shortly after birth and continue throughout life. As a person grows and is confronted with the challenges presented through the usual developmental periods, the body image adjusts. If a person at any age loses a body function that has always been taken for granted, it is common to go through a grieving process. Kubler-Ross (1969) first described the process of a person adjusting to change in their body by outlining the following stages: shock and denial, anger, bargaining, depression and acceptance. The loss of body function can affect a person’s feelings about their whole body image.

Australian society today values youth, athletic bodies, sporting attainment and physical fitness. There is no shortage of support for this ideal in the media. Socially unacceptable appearance and behaviours, such as impaired mobility, dribbling and spasm, are sometimes displayed by individuals with disabilities and remind us all of our own mortality, so disabilities are to be avoided as much as possible. This societal view of disabilities as personal tragedy assumes that individuals with a disability could not be happy or feel good about themselves. Sally can challenge this view by presenting herself as an independent girl getting on with her life. She is simply making the most of her attributes and finding ways to overcome her deficits in much the same way as any other person.

A number of studies have been undertaken that shed some light on the relationship between disability and self-esteem. Studies undertaken to determine the impact of disability on a person’s self-esteem have found that the participants with more severe physical disabilities had lower levels of body esteem than their able-bodied counterparts (Taleporos & McCabe, 2005; Howes et al, 2005). Taleporos & McCabe (2005) explained this finding by the ‘high level of sociocultural pressures within western society to conform to the ideal of the “body beautiful”’(p. 646).

People with physical disability who required assistance from others were also more likely to express feelings of lower body esteem. This was particularly the case for men, whose body esteem dropped more than women’s as the need for assistance increased (Taleporos & McCabe, 2005). They suggested that this might mean that physical disability may have more impact on men’s body image than women’s. Clearly these findings have implications for health professionals, who need to ensure and maintain a person’s independence for as long as possible. Indeed Larner (2005) stated that nurses are in the key position to influence the psychological outcome of rehabilitation due to their 24-hour contact and intimate involvement with treatment regimens.

While people with disabilities expressed lower esteem relating to aspects such as muscular strength, agility and general body, this finding did not apply to other aspects of disability. The duration of disability was not found to be related to body esteem, nor was a person’s face (Taleporos & McCabe, 2005). This might be explained by the sample of the study that comprised mainly people with spinal cord injury and multiple sclerosis, which would have little involvement of the face. The duration of the disability may also be explained by the participant being able to overcome some of the difficulties posed by a new injury so that they regain their independence.

Shields et al (2006) conducted a review of articles measuring self-concept of children with cerebral palsy and compared this with the self-concept of children without disabilities, using the domains of self-concept, social acceptance, athletic competence, scholastic competence and behavioural conduct. They found that adolescent females with cerebral palsy may have a lower self-concept in the domains of social acceptance, physical appearance and athletic and scholastic competence compared with that of adolescent females without disabilities. They concluded that it was not possible, generally, to assume that people with cerebral palsy have a lower global self-concept than those without the disability.

We have seen that both the causes and the effects of disability can be very broad and sometimes difficult to diagnose. For parents, first the suspicion and then the growing awareness that their child has a disability is very stressful. Graungaard and Skov (2006) found that the communication process between health professionals and parents during the diagnostic period was of great importance and seemed to influence the way they coped with their child later. Also important was the stated diagnosis, because this gave parents something tangible to regain some predictability and control in their life. Unfortunately Graungaard and Skov (2006) reported that most parents were critical and dissatisfied with their early experiences with health professionals.

The impact that having a child with a disability or caring for a person with a disability has on the carer’s self-esteem has been considered in the literature. Even though raising children without a disability involves many challenges, for those parents who do have a child with a disability, they can expect to add the responsibility of providing long-term care for their child, facing additional medical expenses and experiencing stigma (Wong et al, 2004). The increased physical and psychological stresses many of these parents face can result in higher levels of stress and lower self-concept (Todd & Jones, 2005; Hassall et al, 2005).

Tam and Cheng (2005) explored the self-concepts of parents with a child of school age with a severe intellectual disability and found that they generally had a lower concept of self than parents of children who did not have a disability. The parents reported that the most stressful aspect of caring for their child included conflicts with the family. This is consistent with other research findings linking adequate support with lower levels of stress in mothers of children with disabilities (Hassall et al, 2005).

CASE STUDY 7.2

Phillip is a 3-year-old boy recently diagnosed with autism spectrum disorder with developmental delay and associated behaviour disorders.

Phillip’s mother says that there were no abnormalities observed during her pregnancy, labour or delivery and that there is no family history of developmental and/or intellectual disability. Phillip’s parents said that he was a ‘good baby’ as he didn’t cry very often and seemed content to lie in his bassinet. His parents became concerned when, at 2 years, he didn’t respond as their other children had to being cuddled and making eye contact. They also noticed that he had developed mannerisms such as hand flapping, rocking and walking on his toes. He showed no interest in playing with his older brother and sister and seemed content to be by himself sitting for long periods of time lining up his toys.

Phillip’s hearing is normal but he has significant speech and language delays and makes no attempt to communicate his needs. This leads to tantrums, screaming, punching his head, hitting his siblings, stealing their food and destroying toys and other objects within his reach. His mother’s attempts to begin toilet training have been unsuccessful and his behaviour has prevented the family taking holidays and socialising with their friends. Phillip’s overall health is good and he meets the height and weight percentiles for his age. However, his developmental milestones have been assessed at 12 months level.

The family unit is Mrs C, 35 years old, Mr C, 38 years old, who works full-time, and two other boys, aged 6 and 9 years, who attend the local primary school. Phillip attends an early intervention program for two days per week. Mrs C expresses feelings of frustration and helplessness with her ability to manage Phillip at home.

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