American Association on Mental Retardation (AAMR) (2002, p 39) defines mental retardation as ‘a disability characterised by significant limitations both in intellectual functioning and in adaptive behaviour as expressed in conceptual, social, and practical adaptive skills … [that] … originates before age 18’. This definition is similar to the DSM-IV-TR definition because it maintains that mental retardation occurs below a threshold IQ score of around 70. However, it differs from the DSM-IV-TR definition in that it emphasises levels of functioning based on adaptive behaviour rather than IQ. Furthermore, according to the AAMR, the individual is assessed according to their support requirements and categorised according to ‘the intensity of needed supports’—that is, intermittent, limited, extensive or pervasive (AAMR 2002, p 152).

It is important to note that although IQ is used to determine whether pensions or other services will be granted, adaptive behaviour is the basis on which professionals working in services for clients with an intellectual disability perform their assessments. The AAMR definition therefore has most application within disability services in Australia and New Zealand. Because a description of adaptive behaviour assessment is beyond the scope of this chapter, you may wish to refer to the AAMR text (AAMR 2002, pp 73–91) for more information.

Although there is no such thing as the ‘typical’ person with an intellectual disability, the following stories are nevertheless intended to give you a general idea of the characteristics of individuals who might fit into the AAMR intensity-of-support categories.

• Ruth has intermittent support needs. She is 20 years old and lives in a suburban apartment in a manner much like the rest of the community. Ruth used to attend a supported employment facility but has recently graduated to open employment in a manufacturing business, having learned the necessary vocational skills at an evening college. She lives a fairly independent life with the support of her family but receives one or two visits each month from her key worker, who assists her in planning meals and budgeting. Ruth has limited numeracy skills but she can competently manage money transactions and perform everyday mathematical calculations. She reads slowly and hesitantly but can read an article in her local paper with few difficulties.

• Barry is 25 years old and has limited support needs. He lived at home with his parents until he was twenty but now shares a suburban house with two other men. Barry works in a supported employment facility but occasionally works on weekends as a labourer with his uncle’s landscapegardening business. Although he makes friends easily and is well known at his local community soccer club, Barry has difficulty budgeting and using his money wisely. He also has a history of trouble with the police because he has occasionally gotten into fights following drinking sessions. Consequently Barry receives five hours of contact per week with a disability worker who assists him in learning financial management skills and in conducting himself responsibly when socialising.

• Jan is a 40-year-old woman who has extensive support needs. She has a hearing impairment and regularly takes medication for her epilepsy. After the death of her parents when she was twelve, Jan was institutionalised in a large state-owned residential facility, where she lived with thirty other individuals in a dormitory-style unit. At age twenty-five she was placed in a home in the community with four other people with similar support needs. The home is staffed by residential support workers and the clients attend day programs where they are provided with opportunities to participate in community activities and improve their living skills. Jan has a limited spoken vocabulary but with the assistance of a hearing aid can understand much of what is said to her. She can read important words like her own name, ‘hot’ and ‘danger’, but cannot read a newspaper or the captions in a television program. She can perform many tasks associated with self-care and personal hygiene, and assists in the preparation of meals and other domestic chores around the house.

• Petra is a 10-year-old girl who has pervasive support needs. Apart from her intellectual disability, she has cerebral palsy (a disorder that limits her ability to move and coordinate her limbs) and epilepsy. These disabilities greatly limit her developmental opportunities and her independence. Petra lives at home with her parents and attends a school that caters for her specific needs. She has great difficulty speaking, because of her cerebral palsy, but can indicate her needs using sounds and gestures that her parents understand and with the aid of a ‘pointer board’, which she uses to point to symbols to indicate a range of things from concrete needs (such as food or drink) to emotions (such as happy). Petra also has a computer device that has a keyboard featuring the symbols on her pointer board and the capacity to electronically ‘speak’ for her. Petra is unable to walk independently but has a ‘walker’, a complex mechanical device that assists in mobilisation, and a motorised wheelchair. Petra’s parents hope that she can one day lead an independent life away from her family home just like any other young adult.

Causes of intellectual disability and associated disorders

Intellectual disability may result from impediments to intellectual development and/or neurological damage caused by factors that include:

• heredity (e.g. genetic causes such as Down syndrome and fragile X syndrome)

• alterations in embryonic development (e.g. fetal alcohol syndrome)

• familial and environmental influences (including deprivation of learning/developmental opportunities due to an unstimulating home environment)

• autistic spectrum disorders (e.g. autistic disorder)

• pregnancy and perinatal problems (including hypoxia or viral infections)

• general medical conditions after birth (including infections and traumas) (APA 2000, p 45).

The best known are genetic causes such as Down syndrome, which occurs in approximately one in 700–1000 births (Dykens, Hodapp & Finucane 2000, p 61).

According to Dykens et al (2000, p 5), however, only about 50% of people with an intellectual disability have known ‘organic’ causes for their condition, with an estimated one-third of all cases being due to genetic abnormalities. This statistic is indicative of the problem of disabilities as an under-explored field for researchers, but this situation may well change, given the prominence of the human genome project and the wealth of data it has generated.

Intellectual disability may also be accompanied by other types of impairment such as hearing impairments, visual impairments and epilepsy (Gilbert, Todd & Jackson 1998). In addition, people with an intellectual disability often lack the ability to make healthy lifestyle choices and are especially prone to developing preventable medical disorders in adulthood (e.g. cardiovascular diseases, nutritional disorders and endocrine disorders), including mental health problems (Barr et al 1999).

Services for people with an intellectual disability

In New Zealand and Australia, most people with an intellectual disability live at home, either with their families or in single or shared accommodation in the general community. A smaller proportion of people with higher support needs live in supported accommodation in group homes. There was once a practice of placing people with intellectual disabilities in large government-funded residential institutions (commonly referred to as institutions) but the proportion of individuals living in institutions has gradually diminished over the past two decades in response to government policies aimed, first, at the deinstitutionalisation of services and the movement of residents into community homes and other services more appropriate for their needs (Young & Ashman 2004) and, second, at the establishment of programs to support families in providing care for children with a disability. In 2000 there were over 6000 people with an intellectual disability living in institutions in Australia (Bostock et al 2001), with about 400 such people living in institutions in New Zealand (D. Hughes, project manager, Disability Services Directorate, New Zealand Ministry of Health, personal communication, 28 July 2003). In 2007 there were about 1600 people with an intellectual disability living in institutions in Australia, and no such institutions exist in New Zealand. These figures do not, however, include estimates of the number of individuals living in privately operated congregate care facilities (such as hostels).

In Australia, the most recent set of blueprints for the process of deinstitutionalisation has been legislated via the Disability Services Acts of the Commonwealth, state and territory governments which were devised between the mid-1980s and early 1990s. The latest ‘New Zealand Disability Strategy: Making a World of Difference: Whakanui Oranga’ (Minister for Disability Issues 2001) is less explicit in its reference to the creation of a vision for disability services and tends to network with other departmental policies.

As institutions have diminished there has been a corresponding growth in community-based services designed to keep the majority of people with an intellectual disability living in family care for as long as possible. Non-government organisations in New Zealand and Australia continue to play an emerging role in direct service provision. Increasingly, however, services have become more specialised within the disability support model and few staff employed by these services have the relevant experience or education to work with people who have a mental illness. These factors can create difficulties for the person with a dual disability in that their acute and/or long-term mental health needs might not be met effectively.

Service philosophy in disability services

Over the past thirty-five years the principles of normalisation, first fully articulated by Wolfensberger (1972), have been a driving force behind the creation and design of services for people with an intellectual disability. This set of principles accounts, to some degree, for the various Disability Services Acts instituted by the Australian Commonwealth, states and territories, the New Zealand Disability Strategy, and the various Guardianship Acts. More recently, O’Brien’s model (1987) has provided direction with respect to the normalisation of services. O’Brien identifies measures to ensure that people with an intellectual disability have:

• an increased physical presence in the community

• choice in how they live their lives

• the opportunity to acquire and develop skills that promote independent living

• respect as citizens

• the opportunity to participate in the community (O’Brien 1987, p 182).

This model emphasises a humanist perspective in which citizens with an intellectual disability are given the same rights and opportunities as any other citizens, even if they need the support of appropriate services. Importantly, proponents of this model advocate the use of generic services (that is, services that any citizen would use, such as public transport, private banking services or general hospitals), rather than specialist disability-based services, in the quest for integration between the disabled and non-disabled populations.

Prevalence of dual disability

Prevalence studies generally indicate higher rates of mental illness among the intellectually disabled population than among the general population (Benson 1985; Borthwick-Duffy 1994; Jacobson 1990; Taylor et al 2004). Some authors have theorised that people with an intellectual disability have a higher probability of developing a mental illness than the general population because their deficits with respect to communication, processing skills, cognitive functioning and social skills cause them to be more vulnerable to stress (Reiss 1994; Sovner 1996). Gilbert et al (1998) noted that intellectual disability may be accompanied by other types of impairment that have been associated with mental health problems in the general population, such as hearing impairments, visual impairments and epilepsy, and that socioeconomic factors such as unemployment and poverty may also contribute to higher rates of mental disorders in this group.

A study of intellectually disabled people living in community settings in Wales (Deb, Thomas & Bright 2001) found that some 4.4% of the sample (N = 90) met ICD-10 criteria for schizophrenia, 2.2% for depressive disorder, 2.2% for generalised anxiety disorder, 4.4% for phobic disorder and 1% for delusional disorder. According to Deb et al:

the overall rate of functional psychiatric illness (point prevalence) was similar to that found in the general community (16%). However rates of schizophrenic illness and phobic disorder were significantly higher in the study cohort compared with those in the general population (0.4% and 1.1% respectively) (Deb et al 2001, p 495).

Studies that estimate the prevalence of dual disability in Australia and New Zealand are small in number. In a Queensland study, Edwards & Lennox (2002) estimated that between 7.4% and 20.2% of clients using services for people with an intellectual disability (n = 7196) also had a mental illness. The validity of this study was, however, compromised to some extent by the failure of 33% of the surveyed agencies to provide data to the researchers. A more exhaustive study of the prevalence of dual disability in Australia was conducted by White et al (2005), who conducted a secondary analysis of the data from the national Disability, Ageing and Careers Survey, 1998. The authors concluded that 1.3% of the sampled intellectually disabled population had a psychotic disorder, 8% had a depressive disorder and 14% had an anxiety disorder (White et al 2005, p 398).

Falling through the cracks

McIntyre, Blacher & Baker (2002) reported on the negative impact of mental illness upon individuals with an intellectual disability and their families. Because of a range of difficulties, however, people within the intellectually disabled population who also have a mental illness remain undiagnosed, are often ignored, or do not have equitable access to mental health services (Chaplin 2004; Fletcher & Poindexter 1996; VanderSchie-Bezyak 2003). At the end of last century, the Australian Second National Mental Health Plan identified people with an intellectual disability as one of the ‘target groups for whom improved service access and better service responses are essential’ (Australian Health Ministers 1998, p 10) and the Australian Association of Developmental Disability Medicine (2005), in its submission to the (Australian) Senate Select Committee on Mental Health, confirmed that this situation had not been sufficiently addressed.

Part of the problem appears to be that carers and disability service personnel tend to lack the skills required to

Case study: Roy

Roy had his first admission to a psychiatric hospital at the age of fifteen and by age twenty he was a permanent inpatient with a diagnosis of mental retardation and bipolar disorder. After considerable trial and error, his mental illness was successfully treated with the assistance of the mood stabiliser lithium carbonate and the ‘typical’ antipsychotic medication, thioridazine. By the age of twenty, Roy was living in Mimosa Lodge, a large hostel run by a charitable organisation, where he was seen initially by a community mental health nurse and a general practitioner (GP).

At the age of fifty, Roy moved from the hostel to a group home run by a non-government agency. He appeared to settle in well and was regarded as a bit of a joker, always attempting to cuddle the female staff. However, very little documentation accompanied him to the new service and there was a minimum of information regarding the history and management of his mental illness. Without records, there was nothing to indicate when he had commenced antipsychotic medication, or why the treatment was started. The staff presumed that his medication had been initiated to manage challenging behaviours that were no longer in evidence. There were also concerns that Roy’s shuffling gait and sleep difficulties were medication-related and so his new GP halved the quantity of thioridazine.

Roy’s sleep pattern deteriorated rapidly, his speech and movements became accelerated, he became more insistent on cuddling both male and female staff and these physical contacts became more overtly sexual. Pre-existing behaviour management techniques (such as identifying and avoiding triggers for Roy’s behaviour, ignoring Roy’s inappropriate behaviour, redirecting him to more appropriate tasks and asking him to spend time in the garden when he was otherwise unmanageable) became ineffective and Roy began to initiate low-level physical assaults upon staff. Additional staff were needed to support Roy at night and the overall support structure started to fracture. After six weeks nurses from the local community mental health team arranged for Roy’s admission to a psychiatric inpatient unit where he spent eight weeks being stabilised on a regimen of lithium carbonate and the ‘atypical’ antipsychotic medication, quetiapine. Nursing management consisted of the standard practices for a person with bipolar disorder.

Following this bout of acute illness Roy was able to return to the group home, where he has been able to resume his usual lifestyle.

Case study: John

John is a 20-year-old man who has limited support needs. He uses little verbal language but understands much of what is said to him and augments his limited speech with gestures and hand signs similar to those used by some people with severe hearing impairments. He can perform most self-care activities but is unable to read and write, except for a few words including his own name.

John was seventeen when his mother died, and this event marked the occurrence of challenging behaviours including sudden displays of aggression directed towards others as well as himself. Because his father could not cope with these behaviours, John was subsequently moved from his family home to a respite house for people with an intellectual disability. John displayed a range of problem behaviours including high-level verbal and physical assaults, theft from staff and other residents, lying, monopolisation of staff time and self-abusive behaviours such as pulling his own hair out and picking the scabs off cuts and abrasions. The house manager sought a full physical examination because blood had been noted in the toilet bowl after John had used it. John became angry and abusive when he was asked about it, but investigations found no physiological cause for the blood in the toilet.

In his assessment, the psychologist identified a grief reaction to the loss of John’s mother and ‘attention seeking’ as the primary cause of his difficult behaviours. A range of behaviour support strategies were subsequently designed and implemented by nurses, including educative programs designed to provide him with more independence in leisure skills, and outings and other activities that John enjoyed. Enjoyable activities were approved on the proviso that he had not stolen property or displayed aggression towards others and John was distracted and redirected to other activities if he engaged in inappropriate behaviours (see Ch 24 for behaviour therapy and other therapeutic nursing interventions).

Nevertheless, over the next six months, the behavioural programs appeared to be having little impact and John’s behaviour continued to deteriorate. At the request of the house staff, John was seen by the mental health team but was uncommunicative and, although staff provided written and verbal information to the assessing psychiatrist describing John’s behaviours and their possible motivation, it was determined that John did not have a mental illness.

John’s behaviours continued to be highly problematic and 10 months after his placement at the respite house, he was taken by ambulance to the local base hospital for the emergency surgical removal of a length of fencing wire that was lodged in his urethra. The surgeon noted that there was evidence of repeated trauma to the urethra and the neck of the bladder and that it was probable that these were self-inflicted injuries that had been sustained over a number of months (see Ch 22 for self-harm, and Ch 9 for grief and bereavement). Concerns about the extent and apparent duration of the self-injurious behaviours resulted in a request by the surgeon for an assessment of John by the base hospital mental health liaison nurse. Further assessment by a psychiatrist resulted in John receiving a provisional diagnosis of major depression. Community mental health staff were subsequently engaged to assist disability staff with his ongoing management.

meet the additional mental health needs of these people (Coyle 2000). Equally, however, health professionals lack skills in dealing with this population (McConkey & Truesdale 2000; Naylor & Clifton 1994) and many may even be unwilling to treat them (McConkey & Truesdale 2000, p 159). Given these problems, much can go wrong in the care of people with dual disabilities, as the case studies of Roy and John illustrate.

Comments on case studies ‘Roy’ and ‘John’

It is clear that the outcomes in both cases could have been catastrophic, particularly if either Roy or John had sustained more serious permanent injury. In Roy’s case, changing his antipsychotic medication (thioridazine) dose had unfortunate consequences that could have been avoided if adequate documentation had accompanied him in his move from one service to the next. Such documentation would have advised the new service of Roy’s long-term mental health diagnosis and alerted personnel to the need to consult a specialist psychiatrist rather than generalist medical services when seeking a review of his medication. Similarly, the management of his behaviour immediately after the halving of his thioridazine dose was not informed by standard mental health management practices and, indeed, mental health professionals were not engaged until his behaviour had reached crisis point.

In John’s case the mental health staff were consulted at an appropriate time but he did not receive appropriate management until his depression was severe and he had engaged in potentially serious self-harm activities. What was required in both instances was effective communication between disability and mental health services, accompanied by a thorough mental health assessment of the clients and the creation of a management plan understood and implemented not only by mental health services but also carers in the clients’ home settings (see acute assessment and management, on the following pages).

Tags: Psychiatric Mental Health Nursing

Feb 19, 2017 | Posted by admin in NURSING | Comments Off

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Intellectual disabilities

Introduction

The language of disability services

Terminology

Systems of classification

Causes of intellectual disability and associated disorders

Services for people with an intellectual disability

Service philosophy in disability services

Prevalence of dual disability

Falling through the cracks

Comments on case studies ‘Roy’ and ‘John’

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