Chapter 47. Children with learning disabilities
Victoria Jones and Ruth Northway
ABSTRACT
In nursing, more than one-third of all the people we come into contact with are disabled in some way (Disability Rights Commission and Department of Health 2004). People experience disability in many different ways, one of which is in the form of the intellectual impairment that is currently termed ‘learning disability’. In virtually all areas of children’s nursing there will be children and young people who have been labelled as having a learning disability. They may have additional health needs and require the support of a range of professionals and different agencies. Parents and other family members also require this support and it is important that it is provided in a coordinated manner.
LEARNING OUTCOMES
• Understand the importance of considering the child before their impairment.
• Define ‘learning disability’ and identify the factors that can give rise to learning disabilities.
• Understand the ways in which the presence of a learning disability can impact on the lives of children and their families.
• Appreciate the role of the nurse in supporting children with learning disabilities and their families in the context of an interprofessional and interagency approach to care.
Introduction
It is essential that children with learning disabilities are regarded as children first and that their needs are met as well as those of the rest of the family. Their needs are the same as for any other child but in addition their special needs must also be addressed
(Lindsay 1998 p 51)
This quote makes some very important points, which form the basis of this chapter. First, it stresses that children with learning disabilities are children first. Second, it recognises that they have additional needs and that their families may have additional needs. This chapter will, therefore, focus on identifying some of these additional needs and suggest some ways in which children’s nurses can work together with the child, his or her family, and other professionals to ensure that these needs are both recognised and met.
It is also important to say that this chapter is written from the perspective of a social model of disability. In the past, society (which includes nurses and other members of the healthcare professions) tended to view disability and disabled people in terms of a medical or individual model of disability. This approach has meant that disabled people were viewed as not being able to do things because of their disability. In contrast, the social model of disability argues that whereas some people may have certain impairments (such as a visual, mobility or intellectual impairment) what actually prevents them from taking a full role in society is a range of physical, social, psychological and economic barriers. In other words, it is these barriers that disable them. This different view of disability has important implications for the way in which we respond to the needs of disabled people (Northway 1997). This chapter will therefore consider both the nature of the impairment that children and young people with learning disabilities are assessed as having as well as the barriers that they and their families may face. The emphasis when considering the nature of professional support should thus be on the identification and (where possible) removal of these barriers.
A final point, which it is important to stress, is that children and young people with learning disabilities, and their families/carers, are not a homogenous group. For example, their social circumstances, personal resources, cultural background and environmental circumstances will vary. In addition, the area in which they live may determine the support services available to meet their needs. This means that we must be wary of generalising and should seek to understand the particular circumstances of each child and his or her family.
The nature of ‘learning disabilities’
Activity• Write a list of all the words you have heard being used to refer to someone with a learning disability. Try to put them in two columns – positive and negative terms as we perceive them today.
• Which ones have been used in legislation?
• Make a list of terms you are not sure about. Try to investigate them.
Terminology and labelling
Some groups of people who have been given the label ‘learning disabilities’ have indicated that, if they must have a label at all, ‘people with learning difficulties’ is the most acceptable term for others to use for them. They emphasise that people with learning difficulties are people first and intellectually impaired second. Guidance from the government (Department of Health (DoH) 2001) reinforces this distinction but uses the term ‘learning disability’ to refer to the same group of people. The government goes on to reject the term ‘learning difficulty’ because it is used in legislation to refer to a group of people with a wider range of educational needs. The term ‘learning disability’ is thus the current term that is used to refer to individuals and groups of people who would previously have been referred to as having a ‘mental handicap’ or being ‘mentally subnormal’. Such terms are no longer used because they are viewed as having negative connotations. Terminology is thus constantly changing and currently a further term, ‘intellectual disability’, is favoured and used by some. It may also be helpful to note that terminology varies across continents and when undertaking searches of literature you may want to include ‘intellectual impairment’ (Australasia) and ‘mental retardation’ (North America) as search terms.
The term ‘learning disability’ is a label applied to individuals and groups for many different reasons (e.g. to organise service provision, define a condition, or explain a delay in achieving developmental milestones). Throughout history, people who currently are labelled as having learning disabilities have had many labels applied to them. These tend to reflect the overarching social and economic climate of the day, dominant theoretical perspectives and the language incorporated into the law of the time. For example, the 1983 Mental Health Act replaced the term ‘subnormal’ with the terms ‘mental impairment’ and ‘severe mental impairment’. Both the Act and these terms are still in use today in legal situations. To understand the nature of learning disability we therefore have to take account of the social and historical context. Different theoretical perspectives have been used to try to understand and explain the nature of learning disabilities. These include sociological, psychological, medical and anthropological perspectives (Gates 2007).
Activity
Activity• Make a list of some of the ways that being labelled as ‘learning disabled’ could be helpful. Then make a list of some of the ways having such a label could be detrimental. It may be helpful to think about how we label other people and things.
• Consider how, in your role as a nurse, you can make best use of labels and terminology for all your clients whilst avoiding some of the negative impacts associated with being labelled.
Being labelled as having a learning disability can have negative consequences due to prevailing social attitudes. Others can view the person with a learning disability as being different and difference in this context is viewed negatively. They can have low expectations of people with learning disabilities and stereotype them as having a range of negative characteristics. This then has an impact on the life experiences of the person to whom the label is applied. For example, if they are viewed as not being able to learn they will not be provided with educational opportunities and, because they have not been given the chance to learn, their educational development will be delayed. The original view of others (that the person cannot learn) is thus reinforced. Social attitudes thus become one of the barriers that disable people who have impairments.
Having a label or a diagnosis can, however, also bring some benefits. For example, unless you are assessed as having a particular condition or need you may be unable to access certain services and support mechanisms. An example of this might be access to additional educational support in the classroom, which can only be accessed after assessment and diagnosis as having a learning disability.
Labels and diagnoses can also be seen to be of benefit to service planners and service providers. Epidemiological and demographic studies (which rely upon the identification, collation and quantification of certain characteristics) are used as a basis upon which to decide priorities for service development. Similarly, criteria are often applied by services to decide who should (and who should not) be able to access their service. They may thus serve as criteria for rationing of limited resources.
Formal criteria have been developed to ‘identify’ people who fit into the group of people labelled as having learning disabilities. These can be grouped under cognitive, social functioning and developmental approaches.
Cognitive functioning approach
Despite there being a lot of disagreement about exactly what intelligence is, and whether we can establish fair and equal ways to measure it, intelligence has been used as a factor to determine if someone has a learning disability since the early 1900s (see Gross (1991) for a critical discussion).
The intelligence quotient (IQ) is a standardised figure that makes it possible to compare how an individual performs against other people in the population when taking a test of their cognitive ability. IQ is worked out using the following formula:
The World Health Organisation (WHO 1993) refers to IQ measurements to distinguish the degree of impairment experienced by people with learning disabilities. In this way a child’s learning disability may be described as being:
• mild
• moderate
• severe
• profound.
Social functioning approach
This refers to the ability of an individual to adapt to the demands made by society and to hold roles in their community. For example, the ability of a child to meet his or her social needs in a classroom setting (communication, self-help, independence and relationships). However, measuring the degree of social functioning of an individual is difficult. If we refer back to the social model of disability it can be seen that the extent to which the child can function is going to be influenced by the degree to which appropriate supports are in place. For example, how many of us would find that our social functioning was impaired if we were unable to wear one form of support, namely our glasses or contact lenses? Similarly, a child may have some degree of intellectual impairment but his or her ability to be independent in a classroom setting may depend on the extent to which picture symbols are used to indicate where key facilities (such as the toilet) are. Additionally, many people who might have an element of impaired social functioning might not have a learning disability; some may also have physical or mental health needs that impair their social functioning. It is also important to take account of the age of the child and what would normally be expected in terms of their social development.
Reflect on your practice
Reflect on your practiceThink about the situation of children with learning disabilities in the context of a children’s ward in which you have worked. How could their social functioning have been improved in this context?
The developmental approach
The WHO (1993) refers to social functioning/ability in its current definition of learning disability, but also introduces a further element, namely the period during which the impairment occurred:
Learning disability is a state of arrested or incomplete development of mind, which is especially characterised by impairment of skills manifested during the developmental period…
(WHO 1993)
This distinguishes a learning disability from other forms of impairment of social and cognitive functioning that may arise later in life, such as those that result from brain injury or dementia.
Combining approaches
What tends to happen is that the cognitive, social and developmental approaches are combined when seeking to provide a definition of learning disabilities and when seeking to determine whether an individual has learning disabilities or not. This can be seen in the current definition used by the DoH (2001 p 14) in the White Paper ‘Valuing people’, which states:
Learning disability includes the presence of:
– a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with;
– a reduced ability to cope independently (impaired social functioning);
– which started before adulthood, with a lasting effect on development.
Factors that can give rise to the presence of a learning disability
A learning disability can result from a single causative factor or from multiple interacting factors. Many children with learning disabilities do not receive a specific medical diagnosis (Department of Health and Department for Education and Skills (DoH/DfES) 2004). Indeed of all people who are labelled as having a learning disability it is often only possible to identify the specific causative factor for less than half. This figure, however, has increased in recent years due to advances in genetics.
Watson (2007) identifies four stages at which learning disabilities may occur. These are preconceptual, prenatal, perinatal (the first 28 days of life) and postnatal (28 days onwards). At each stage factors relating to heredity and the environment can exert an influence. Some causative factors are the following:
• Preconceptual: this might include the fact that genetic characteristics of the parents may give rise to an increased risk that the child will inherit a particular condition. In addition, the health of the mother may give rise to increased risks.
• Prenatal: this might include, for example chromosomal anomalies, genetic disorders, infection, irradiation, immunological and toxicological damage, maternal malnutrition.
• Perinatal: this might include, for example, difficult or abnormal labour, birth injury, prematurity and gestational disorders.
Although it may be possible to identify key factors to explain the presence of a learning disability in some children it is often difficult to try and relate their level of cognitive or social functioning to one cause as it would be impossible to know the many other factors which may have had a chance to influence their performance.
In addition the link between the causative factor and the effects this has on the individual are often unclear. For example, in the case of children who have Down syndrome, the causative factor is known (i.e. trisomy 21) but exactly how this brings about the characteristic features of the syndrome is not so certain. It does, however, tell us that because the child has Down syndrome they are more likely to have certain health conditions such as cardiovascular problems, leukaemia, hypothyroidism and sensory impairments (NHS Health Scotland 2004). That is not to say that all children with Down syndrome will have these problems, but rather that they have an increased risk.
It is therefore unhelpful to apply a ‘cause and effect’ model that raises the risk of implying or offering a prognosis for a child that may be wholly inaccurate. Indeed, such an approach may even serve to deny children the opportunity to be the individuals that, both genetically and socially, we all are.
www
wwwFor information on specific conditions and syndromes, along with details concerning inheritance patterns visit the web site of the organisation Contact a Family at:
The incidence of learning disability
The difficulties in determining precisely who might be considered to have a learning disability have been outlined above. Despite these difficulties, however, it is possible to try and identify how many people have a learning disability. For example, the DoH (2001) stated that in England alone about 1.2 million people have a mild learning disability. A further 210,000 people have a severe or profound disability and of these it is thought that approximately 65,000 are children or young people.
The prevalence of moderate and mild learning disability is generally higher among deprived and urban populations. The incidence of severe and profound learning disabilities, however, does not vary across regions or socioeconomic groups but the number of people with severe learning disabilities is expected to increase by about 1% per year until 2016 (DoH 2001). This is due to:
• greater life expectancy
• increasing numbers of children with complex and multiple disabilities surviving to adulthood
• a significant rise in the number of children with autistic spectrum disorders
• a greater incidence in the number of children with profound disabilities born to some families of South Asian heritage.
These last three factors have clear implications for children’s nurses with regard to the skills and competencies needed to work effectively with learning disabled children and their families. There will also be implications for those managing and developing services, who will need to ensure they can meet the needs of this expanding population. The importance of ensuring that a skilled workforce is available to make services accessible for all disabled children has been recognised by the government (HM Treasury and Department for Education and Skills 2007).
The impact of learning disability on the child and the family
When considering the impact of learning disability on the child and his or her family, it is important to consider a number of different aspects from initial diagnosis and growing up through to transition to adult services. An understanding of each of these aspects is important if children’s nurses are to provide an effective service to children with learning disabilities and their families. In addition it is important to consider the health needs of children with learning disabilities since children’s nurses have a key role to play in identifying such needs and in ensuring that they are met. In thinking about the impact of a child with learning disabilities on the family it is important, however, to remember that this impact can be positive and that where difficulties do arise these can often be the result of a lack of support or inappropriate service provision (Maxwell & Barr 2003). As SCOPE notes:
…many of the difficulties that ensue when a child has a disability are largely a result of the way society responds to that fact rather than being an inherent part of the disability itself
(SCOPE 1999 p 28)
This is clearly linked to an understanding of disability based on the social model. Barriers that can negatively affect the child with a learning disability and their family thus need to be identified and eliminated.
Activity
Activity• Read the paper written by Maxwell & Barr (2003) for an excellent overview of the experience of one mother of a young person with Down syndrome over the early years of his life. Although this is only one mother’s account, it clearly highlights a range of issues that are evident in the wider literature.
• When reading the article, try to identify some of the barriers which the child, the mother and the rest of the family have experienced.
• What helped the family and what caused them additional difficulties?
Initial diagnosis
Receiving the news that your child has a learning disability can be a difficult process. However, it can also be a point from which parents can begin to plan the future (Dobson et al., 2001 and Maxwell and Barr, 2003). Crucial to this process is the manner in which concerns regarding the child’s development are shared with the family since problems occur when a carefully considered and planned approach is not taken (SCOPE 1999).
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