26

Learning Disabilities

Jane Goodman; Wendy Wright

INTRODUCTION

An Overview of Learning Disability Practice in the UK

People with learning disabilities and those with mental health difficulties were confined in the same institutions in the past. There is, therefore, a shared history of societal stigma, discrimination and segregation. This has led to confusion about the differences between the two service user groups and about how to provide appropriate support (Thomas and Woods 2003).

In recent years distinctions between the two groups have become much clearer. In contrast to mental health problems (which usually develop after childhood, may be temporary, and change over time), learning disabilities are characterized by significant impairment in intellectual and social functioning with an onset before adulthood and with lifelong impact (Debenham 2010). Pressure from service user groups, combined with government guidelines has led to the development of more individualized services (DH 2001a). However, reviews of the implementation of the Valuing People White Paper (DH 2009a) highlighted the need for further work to ensure that all people have individual care plans and can access relevant support services regarding their general health, housing, employment, finance and education. The needs of carers and older people are addressed also.

In addition to broad changes in health and social care provision – such as integrated service provision, generic working and social enterprises (Her Majesty’s Government 2007; Darzi 2008) – learning disability practice has been influenced by cases of service failures, such as in Cornwall Health Trust (Commission for Healthcare Audit and Inspection 2006) and in Bristol, at Winterbourne View (Care Quality Commission 2011). These cases raised issues about the welfare of service users, including safeguarding from abuse, response to medical needs, and the training and supervision of staff. It is therefore essential that practitioners keep abreast of practice developments and maintain high-quality services that address the full range of service users’ diverse needs.

Furthermore, there is an increased prevalence of mental health problems among people with learning disabilities (About Learning Disabilities 2011). This requires an understanding of different approaches to mental health problems, particularly in terms of the impact that an individual’s learning disability will have on their communication, behaviour and daily occupations.

Defining Terms

The term learning disabilities is in common use in the UK (replacing the term mental handicap) in policy documents (Emerson and Heslop 2010). However, there is no universally accepted term and learning difficulties is often favoured by service user groups. This should not be confused with specific learning difficulties experienced by children with medical, emotional or behavioural needs who do not have intellectual impairment (Warnock 1978; Holland 2011).

The Department of Health defines learning disability as ‘the presence of:

■ a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with;

This definition encompasses a wide range of needs and abilities. Individuals with mild learning disabilities may lead independent lives, while those with moderate or profound disabilities will need extra support with communication, mobility and/or personal care, and may be regarded as vulnerable adults. The mini case studies presented in Case study 26-1 give an indication of the range of learning disabilities.

In practice, the terms ‘learning difficulty’ and ‘learning disability’ are often used interchangeably (Emerson and Heslop 2010) and other terms such as intellectual disability or developmental disability may also be used. People with learning disabilities represent about 2% of the UK population, although differences in definition and data collection mean this is an approximation (Allgar et al. 2008).

The terms autistic or autism are also found in this field to describe people with ‘… a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them’ (National Autistic Society 2011a). The term autistic spectrum disorder recognizes that autism may affect people in different ways. Some people with autism are able to live relatively independent lives but others may have accompanying learning disabilities (National Autistic Society 2011a). People with either of these diagnoses generally come under the umbrella of learning disability services while those with a diagnosis of Asperger (or Asperger’s) syndrome (National Autistic Society 2011b) do not.

Historically, definitions of learning disability have been based on individual factors such as educational ability, IQ, social functioning or adaptability, and the prevailing sociological, psychological, medical, anthropological theories of the time (Gates et al. 2007). Gates et al. (2007) argued that ‘… no single criterion is likely to provide a definitive answer’ (p. 4) to the challenge of defining learning disability and it is now recognized that a combination of factors (combined with the time of onset) should inform diagnosis (Holland 2011) and needs assessment.

The terms ‘mental impairment’ and ‘severe mental impairment’ are used within the Mental Health Act (DH 1983), the benefits system, and the Criminal Justice system. These have a specific legal meaning and should not be confused with the needs of the general learning disabilities population (Northfield 2004).

In addition to their learning disability, some people also experience mental health problems, physical and sensory disabilities, and a higher incidence of health problems such as heart conditions, diabetes and epilepsy. Despite the commitment to ensure equality of provision in Valuing People (DH 2001a) there remains a shortfall in relevant services for people with a learning disability, combined with poor access and lower uptake (Ouellette-Kuntz 2005; Krahn et al. 2006). Consequently, Allgar et al. (2008) noted that health outcomes are poorer compared with the general population and recommended the early identification of such problems in primary care and the development of preventative strategies including health checks.

Causes of Learning Disabilities

For a significant proportion of the population (about 50% of those with a mild learning disability and 25% of those with a moderate to profound disability), there is no known single cause of learning disability (Holland 2011). However, recognized causes include genetic conditions (such as tuberous sclerosis and Hurler syndrome) and chromosomal abnormalities such as Down (or Down’s) syndrome (Watson 2007). Additional contributory factors include birth trauma, premature birth, early childhood/maternal infections and environmental factors such as the effects of drugs, alcohol, or the effects of poor socioeconomic conditions such as malnutrition or social deprivation. Watson (2007) suggested that an understanding of the stage at which the learning disability occurred and potential causative factors is essential in working holistically with service users.

Increased access to genetic testing, pre-natal care and medical advances mean that more advice and support (such as genetic counselling) are now available for parents. While this helps in identifying potential risk factors when planning interventions (Watson 2007), these developments inevitably raise moral and ethical dilemmas for those making decisions (Holloway 2007).

Whatever the cause of an individual’s learning disability, it is important to distinguish between the impact this has and the influence of additional health issues. Identified needs can then be appropriately addressed rather than automatically attributing them all to the individual’s learning disability.

CARING FOR PEOPLE WITH LEARNING DISABILITIES

A Historical Perspective

Historically, the segregation and stigmatization of people with learning disabilities arose from a societal view that they were, at various times, a possible threat to the gene pool, uneducable and/or unemployable or ‘medical cases’ requiring treatment (Grant and Ramcharan 2005). These views still have an influence to some extent today, in terms of negative societal attitudes and poor access to services.

Institutional Care

From the end of the 19th century and for much of the 20th century, custodial care was a key feature of services for people with learning disabilities. It was a politically and socially determined phenomenon that paid scant attention to the views of service users (Carpenter 2002; Atherton 2007; and see Ch. 1 for the history of institutional care). In response to recommendations in the 1913 Mental Deficiency Act, residents were drawn from ‘… Victorian Asylums, hospitals and poor houses, as well as from the streets, workplaces and family homes’ (Fitzpatrick 2011, p. 486). Self-sufficiency in institutions emphasized education, work, leisure and medical treatment (Carpenter 2002; Atherton 2007). The strong work ethic found many residents working in the kitchen, laundry, industrial workshops and gardens to serve the institution’s residents and staff. Children were often admitted to custodial care to protect them and the community from the presumed impact of their mental deficiency, such as irregular school attendance (Carpenter 2002).

While early legislation provided for community resettlement, in practice, institutional care was lifelong for many people. This shift in ideology can be attributed to a number of causes, notably ‘the eugenics movement and the development of a standardised instrument to measure intelligence’ (Goodman et al. 2009, p. 24), fuelling the view that people with a low IQ had a permanent disability. Legislation in the early 20th century outlined how people (who were considered ‘mental defectives’) should be detained in institutional care. The result was a significant increase in admissions to long-stay hospitals, which was to last until the Mental Health Act of 1959, when compulsory detention was removed in favour of informal admissions. Research studies in the 1950s criticized the notion that IQ was the only measure of a person’s ability and discovered that rehabilitative activities and training improved the potential for learning (Goodman et al. 2009). However, it was not until much later in the 20th century that community care was developed. Case study 26-2 provides an illustration of institutional living.

From the early 20th century, ‘occupational therapists’ are mentioned in the literature about institutions, although initially such ‘therapists’ were untrained staff. Changes in philosophy (from self-sufficiency to therapy) and loss of land in the 1950s, saw a gradual increase in the provision of educational and creative activities such as rug-making, basketry, woodwork, gardening and stool seating, alongside traditional industrial and workshop activities (Carpenter 2002):

For many people, occupational therapy provided structure to their week. It was often regarded as work and was highly valued as the day-time occupation away from the ward. The therapeutic activities were graded to increase skill levels and were chosen for their physical, social and cognitive benefits. However, there was limited scope for individuals to engage in activities focused on increasing their independence.

Resettlement and Community Care

Although key policies in the 1950s had mentioned community care options and the 1971 White Paper advocated a reduction in hospital beds and increased provision in the community (DHSS 1971), it was not until the 1980s and 1990s that resettlement programmes became fully developed (DH 1990). Multiprofessional resettlement teams coordinated the resettlement process with occupational therapists playing a key role in assessing individuals and assisting the development of skills for living in a range of accommodation types, such as small supported group homes, core and cluster services, and smaller institutions. Approaches to resettlement varied; encompassing help given to people within the institution before moving to the community, and providing support once a move had been made (Values into Action 1994). Case study 26-3 provides an example of resettlement.

Community Learning Disability Teams

Alongside the closure of hospital services Community Learning Disabilities Teams (CLDTs) provided a coordinated and planned local service for people with learning disabilities (Goodman et al. 2009), including those who were already living in the community and later those who were resettled. These teams were jointly coordinated between health and social care services and were multidisciplinary, comprising social workers, community nurses, occupational therapists and other professions. CLDTs remain the main point of access to health and social care services up to the present.

Today, the role of the occupational therapist is central in the CLDT in providing specialized interventions, advice and education, and in contributing to generic team roles such as care co-ordination and person-centred planning (Lilywhite and Haines 2010). CLDTs work in close harmony with housing provision, day services, generic health services and social care providers.

Changes in Philosophy

Only in the latter part of the 20th century have people, through their own efforts and through changes in the philosophical approach to service provision, become more valued as self-determining individuals and considered as ‘people first’; capable of making a valid contribution to society. In the UK, legislation such as Valuing People (DH 2001a) and parliamentary attempts to change attitudes through bills such as the Disabled Persons (Independent living) Bill (UK Parliament 2006) have highlighted the needs and rights of people with learning disabilities to lead more self-determining and fulfilling lives in the community (Goodman et al. 2009).

Nirje and Wolfensberger’s ideology of ‘normalization’ has been influential in this respect (Nirje 1969; Wolfensberger 1972). It advocates for the right of people with learning disabilities to experience ‘normal’ patterns and developmental stages in life and to make valued contributions to society. The more recent developments in this field have been termed social role valorization to emphasize the importance of recognizing what is socially valued in society. These ideals are reflected in the influential work of O’Brien (1987) who established five principles on which contemporary learning disability services should be based: community presence, respect, community participation, competence and choice.

Generally, there has been a shift away from a medicalized view of people with learning disabilities – which focussed on aspects of individuals’ health and behaviour that could be changed for the benefit of the wider community, often without the individual’s consent (Goodman et al. 2009) – towards a social model, which considers the extent to which society enables or prevents an individual from leading a full life. This emphasizes practitioners’ role as enablers, maximizing individual’s engagement with life opportunities.

The Contemporary Practice Context

The key influential legislation in the early part of the 21st century has been the Valuing People White Paper (DH 2001a) and Valuing People Now (DH 2009a). The principles espoused in these documents represent a concerted effort to design services that are based on individuals’ needs and also to provide funding and implementation guidance, aiming to do this in partnership with service users and their support networks at all levels of service.

Collaborating in service provision in meaningful and positive ways requires a change in attitude and a move towards shared power and control. This includes providing accessible information, advocacy (and supporting self-advocacy) and appropriate levels of support (Parry and Jones 2009). The work of People First, an international self-advocacy organization, is committed to achieving this (see Case study 26-4 and Useful resources at the end of the chapter).

The Valuing People White Paper (DH 2001a) addressed four key areas: choice, independence, inclusion and rights. These permeate all aspects of a person’s life, including housing, employment, health, relationships, day services and education. It urged implementation through partnership boards and tools, such as person-centred planning and Health Action Plans to enable individuals to enjoy greater self-determination in their lives (DH 2001a, b). In addition to these changes, more attention is now paid to involving service users in recruitment, service user forums for planning and evaluation of services, staff training and development, and advocacy support for the individual.

Person-Centred Planning

Person-centred planning is ‘a way for people with learning disabilities to plan for what they want now and in the future, with the people in their lives who they like and trust’ (Kirklees Council 2008). This process makes use of planning tools such as MAP (Making Action Plans) and PATH (Planning Alternative Tomorrows with Hope) (O’Brien et al. 2010), to help the person engage fully with their plan, emphasizing their strengths and abilities and enlisting support from family and friends.

Health Action Plans aim to enable an individual to get the support they need to lead a healthy life. They can be developed by the individual or with a health facilitator such as their carer, healthcare worker or GP. The plan is personal to the individual and contains information about their mental and physical health needs, medication and health contacts. With the individual’s consent, it can be shown to others in order to provide appropriate help or advice. Plans may be in pictorial, digital or electronic formats to suit the individual (DH 2007a).

Valuing People Now (DH 2009a) reported good practice and significant change for many people but also highlighted that there was still work to be done to ensure that everyone had appropriately planned access to services. The Care Planning Approach (CPA) ensures that the service user is always at the centre of their care, while the Triangle of Care approach is aimed at improving partnership working between service users, staff and carers (National Mental Health Development Unit et al. 2009), to ensure equal involvement in planning care and working towards recovery (Mental Health Foundation 2012).

Although, in a minority of cases, institutional care (albeit in smaller-scale ‘institutions’) still exists for some people, it is very different to the resettlement provision in the 1980s and 1990s, with a growing emphasis on personalized, supported accommodation. There has also been better integration across health and social care and an increasing role for third-sector organizations in the provision of housing and day services over the past 10 years. Recent innovations include the transformation of some services into social enterprises, with the aim of increasing productivity, quality of care and job satisfaction (DH 2012).

Changes in the funding of service provision are also a feature of the current practice context. For example, by using Direct Payments (DH 1997) local authorities have more flexibility in providing individuals with funding to purchase individualized packages of care (such as day care placement or a support worker), although local differences and slow take-up have been noted (Ryan 1999; Samuel 2011).

OCCUPATIONAL THERAPY AND LEARNING DISABILITY

Occupational therapists ‘have wide roles supporting engagement in occupation and promoting independence and community participation’ (Lilywhite and Haines 2010, p. 1), as well as advocating on service users’ behalf to ensure they are central in the care-planning process. As with other professions, the occupational therapist’s role is rapidly changing. Generic or extended roles, such as that of care manager, key worker or trainer are often balanced with the specialist role addressing the impact of the person’s learning disability on their daily occupations.

Although there is an increasing demand for assessment rather than direct intervention (Lilywhite and Haines 2010), occupational therapists continue to use their specialist skills in negotiating with the individual to prioritize needs, targeting assessment and intervention in these areas, and working as part of the wider inter-agency and multidisciplinary team to do this. In many cases, this includes implementing interventions through others by training and advising carers or other professionals, enabling them to support the person in their day-to-day environment.

Interventions may focus on providing opportunities to engage in new occupations or to develop skills in using public transport, home management, or using community resources; the overall emphasis being to increase independence. Enabling service users and their carers to implement strategies for managing sensory processing and physical challenges within daily life is a major role also.

A feature of occupational therapy is often long-term intervention across a person’s lifespan, including a key role in supporting people with complex needs and at times of transition in their lives (Lilywhite and Haines 2010). In this regard, therapists are often challenged to use the whole breadth of knowledge and skills related to both physical and mental health. Occupational deprivation and the limited opportunities to engage in socially accepted roles, relationships and communities strongly influence occupational therapy interventions in this field.

Referral

Consent

The issue of consent to intervention can be complex. It may involve consideration of reduced mental capacity and additional communication difficulties. An understanding of the implications of The Mental Capacity Act (DH 2005) is essential, particularly within inpatient settings, where individuals may refuse admission or interventions. Deprivation of Liberties assessments may be put into place if the person is assessed as not having the capacity to make decisions about their treatment (Ministry of Justice 2008).

Establishing how best to communicate with the person may be a necessary precursor to discussions about consent. Visual aids and objects of reference may be used to ensure that the person understands the type and purpose of interventions being suggested. For those without capacity to consent to interventions in inpatient services a ‘Best Interests’ meeting may be convened to make a decision on their behalf (DH 2005). Case study 26-5 gives an example of a complex consent issue.

Related posts:

Approaches to Practice The Acute Setting Working on the Margins: Occupational Therapy and Social Inclusion Life Skills Professional Accountability Play

Stay updated, free articles. Join our Telegram channel

Join