Belonging for People with Profound Intellectual and Multiple Disabilities

Pushing the Boundaries of Inclusion

Melanie Nind, Iva Strnadova, Melanie Nind, Iva Strnadova

• Publisher: Routledge
• Year: 2020
• Print ISBN: 9780367202941
• eBook ISBN: 9780429536311
• Topic: Education
• Subtopic: Education General

This book pushes the boundaries in the way we approach people with profound intellectual and multiple disabilities, and in how we work with them in education and research. While it is grounded in diverse theoretical frameworks and disciplines, the book coheres around a commitment to seeing people with profound intellectual and multiple disabilities as equal citizens who belong in our classrooms, research projects and community lives.

Each section covers policy contexts, key ideas and recent research. Featuring contributions from around the world, the book incorporates established and new voices, different disciplines and experiences. Additionally, it includes pieces from family members of people with profound intellectual and multiple disabilities. Divided into three parts, the book explores three main topics:

• Belonging in education
• Belonging in research
• Belonging in communities

Belonging for People with Profound Intellectual and Multiple Disabilities is an invaluable resource for scholars, professionals and postgraduate research students with an interest in children or adults with profound intellectual and multiple disabilities.

1

Changes in the Lives of People with Profound Intellectual and Multiple Disabilities

Melanie Nind and Iva Strnadová

Understanding profound and multiple learning disabilities

It is impossible to begin discussing the lives of individuals with profound intellectual and multiple disabilities (PIMD) without first establishing who we mean. This is not to say that the whole process of labelling people, particularly focusing on impairments, is at all comfortable. It is more a recognition that defining the group is essential not just in the world of resource and service planning, but to the process of articulating with any degree of clarity the debates and developments pertaining to persons in that group and their lives and needs. We cannot supply a universally agreed definition of profound intellectual and multiple disabilities (as none exists) but we can commit to describing individuals using the language of the people who love and support them without sidestepping the question of definition.

Inevitably, there are international differences in terminology that make common definition challenging. While profound intellectual and multiple disabilities is the term that travels best internationally, profound and multiple learning disabilities (PMLD) is the term used in the UK for adults, and for children this becomes profound and multiple learning difficulties. The group is often referred to as those with ‘high support needs’ (Lyons and Cassebohm 2012). The World Health Organisation in ICD-11 (2018) refers to ‘profound disorder of intellectual development’ and the American Association on Intellectual and Developmental Disabilities and the American Psychiatric Association in DSM-5 (2013) refer to ‘profound intellectual disability’. We can treat these terms as synonymous without neglecting the contextual differences behind them; in this book, the chapter authors use the terminology from their own contexts.

People with profound intellectual and multiple disabilities are characterised by their profound intellectual and severe physical disabilities, resulting in little or no apparent understanding of spoken language, and often co-occurring sensory impairments and health problems (Nakken and Vlaskamp 2007). This results, as Luijkx et al. (2019) argue, in the need for pervasive support. Critical to definitions of people recognised in this way is that they ‘have more than one disability and that one of these is profound intellectual impairment’ (Lacey 1998: ix). The list of common elements across the literature that Bellamy et al. (2010: 225) note also includes the possibility of ‘autism or mental illness or challenging behaviours or an associated medical factor’.

Across definitions, the extent of the impairment or support needs is often detailed in communicating the severe challenges that people face (e.g. requiring extensive daily assistance, support and supervision (Llewellyn et al. 2005). The international ICD-11/DSM-5 definitions refer to people's use of non-verbal or rudimentary forms of communication, need for substantial supervision and support and reliance of others. Comparisons with the developmental levels or communication milestones of infants (e.g. Ware 1996; Hogg 2004) may be employed. In some cases, (e.g. World Health Organization 2007), the intelligence quotient of under 20 is used and reference made to aetiologies and life-limiting conditions (e.g. Nakken and Vlaskamp 2002; Mansell 2010).

How we understand profound intellectual and multiple disabilities needs to recognise the profundity and complexity of what is going on within the individual, which interacts with disabling environmental and attitudinal factors (i.e. a social relational model) (Thomas 1999). Thereby, we are concerned with people who have ‘substantial barriers to learning and participation in community life, which arise from an interaction between organic impairments and an often unresponsive and unsupportive environment’ (Sheehy and Nind 2005: 34). It is not just that their impairments are added together to complicate matters for them, it is that any one of their difficulties is complex in itself, and that the impairments are experienced in a world that is not well-adapted to them. Parents report that their children are often seen as just too impaired to be catered for (Mansell 2010). Hence, we need to combine some form of critical realism with an effort not to entrench low expectations; we need to include reference to what people can do in the best environments with people who can interpret their communications. For example, in keeping with a tone set by Lacey and Ouvry (1998), Vorhaus (2014) describes three young people with profound learning difficulties needing constant care who are playful, resilient, responsive and loved. This helps to counterbalance the list of deficits that are often recounted.

A marginalised group

One of the reasons that individuals with profound intellectual and multiple disabilities are poorly understood and often neglected is that they are a relatively small group. Often data are not available on their numbers. As an indicative figure, in England Emerson (2009) estimated 16,000 in 2008 growing by 1.8% per annum to around 22,000 in 2026, with growing numbers with life-limiting conditions surviving through their school years (Male 2015). The Centre for Disability Research for the Department for Health in England suggested 1.34 per 1,000 of those aged under 18 as the best guess of prevalence and in the USA a range of 0.9 to 4.3 per 1,000 is given (National Academies of Sciences, Engineering, and Medicine 2015). Accessing prevalence data for Australia is nearly impossible as the national survey of the Australian Bureau of Statistics (ABS) (2015) is based on the International Classification of Functioning, Disability, and Health (2001), and thus does not work with categories such as profound intellectual and multiple disabilities. We will not go through international comparisons but stress that wherever and however the counting is done, the prevalence of profound intellectual and multiple disabilities is small but rising.

Another factor interacting with individuals with profound and multiple learning disabilities being poorly understood and marginalised is they are usually provided for separately from other groups, with isolation and invisibility playing a role in their exclusion from debates. While children with profound intellectual and multiple disabilities in global north countries may be less likely to be segregated from the remaining children with severe learning difficulties in special schools than they used to, it is rare for them to be placed in mainstream provision and they are more likely to be in residual special schooling, especially as they progress through the schooling systems (Lyons and Arthur-Kelly 2014).

While not drawing attention because of their numbers, people with profound intellectual and multiple disabilities are placing high demands on health and social care sectors (Parrott et al. 2008) and education budgets everywhere. This is in spite of families providing the bulk of support and care (de Haas and Ryan 2016). Individuals with profound intellectual and multiple disabilities require costly, co-ordinated provision. As a group, they have been singled out as not benefitting equally or sufficiently from policy changes such as Valuing People in the UK (Greig 2005). They are regarded by professionals as poorly supported and provided for in the transition to adulthood (PMLD Network unpublished survey cited by Mansell 2010). Mansell (2010: 7) summed up, when introducing his review of services in the UK following the Department of Health Valuing People Now strategy,

people with profound intellectual and multiple disabilities and their families face being written off, as not worth bothering with, as too difficult to support well and as people for whom the poor standards of the past are all that can be achieved.

(Mansell 2010: 7)

We turn next to looking at the recent past to develop further understanding of the context in which people with profound intellectual and multiple disabilities are living their lives and to underscore our concern with their belonging in education, research and communities.

Changes over time

The history of school educational opportunities for students with profound intellectual and multiple disabilities is a relatively short one (Lyons and Arthur-Kelly 2014) in a history of people with profound intellectual and multiple disabilities viewed as eternal children, sub-human and even subjected to euthanasia (Lyons and Cassebohm 2012). Our brief historical overview takes us back just a few decades to the 1960s (for longer histories, see Rolph et al. 2005 or Johnson and Walmsley with Wolfe 2010). As the responsibility of the Department of Health, children in England attended day centres rather than schools, not deemed educable until 1970. As a sub-group of the then ‘mentally handicapped’ population, they did not belong even with their peers with disabilities and were often placed in separate ‘special care’ classes. Skills analysis and behavioural techniques dominated in a diet of self-help tasks, motor skills and basic discrimination teaching (Kiernan et al. 1978). This historical context was similar across the global north.

Currently, despite a strong push for inclusive education, students with profound intellectual and multiple disabilities continue to be educated mostly in special schools (Male and Rayner 2009; Lyons and Arthur-Kelly 2014). The trend has been towards Individualised Education Programs (Lyons and Cassebohm 2012) within a context of conditional rights to mainstream learning environments. In England, Statements of Special Educational Needs introduced by the 1981 Education Act have been replaced by Education, Health and Care Plans in the Children and Families Act 2014. Legislation assumes education in a mainstream setting for pupils with such plans unless – critically – this goes against the wishes of the young person or their parents or would impact on the efficient education of others. In Australia, it is the Disability Standards for Education (2005), according to which students with disabilities have a right to access education ‘on the same basis as’ all students. In practice, Lyons and Arthur-Kelly (2014) argue, if the inclusion of a student in a mainstream school presents unjustifiable hardship the student is educated in a special class/school.

Alongside the change to seeing children with profound intellectual and multiple disabilities as educable were changes in adult provision. Long-stay institutions had been housing many people with learning disabilities. The sub-group deemed ‘low-grades’ were even further segregated into ‘special care wards’. The grim realities of lives of physical and emotional neglect were exposed by Maureen Oswin in her book The Empty Hours (Oswin, 1971). Later she argued:

It is very important that we remember these children who lived in the Special Care Wards. When we talk about exclusion we have to understand that in all institutions there will be groups within groups, and the most deprived and excluded group of people in the old Mental Handicap hospitals were those who had multiple disabilities. Their wards were rarely seen.

(Oswin 1990: 141)

We reiterate how important it is to remember such inhumane treatment in our lifetimes. A turning point was interest in people with intellectual disabilities living an ordinary life (see Johnson et al. 2010) and the wave of normalisation beginning in Scandinavia (Nirje 1970; Bank-Mikkelson 1980) and the USA (Wolfensberger 1972) that brought fundamental attitudinal change in Australia, the UK, the US and beyond. While interpretations differed (Culham and Nind 2003), these changes were essentially about creating existences that were ‘as close to normal living conditions as possible’ (Bank-Mikkelson 1980: 56), and about recognising people as citizens worthy of ordinary housing, education, work, leisure and relationship opportunities. The ethos of bringing value to people and their lives was successfully embedded in services and led to the closure of most of the large institutions in the last decades of the 1900s (Johnson and Traustadottir 2005).

For individuals with profound intellectual and multiple disabilities, some of the turning points were on the more intimate scale of their interactions with others. In the 1980s and 1990s, the meaningless of much of the ‘normal’ opportunities in schools and adult services became apparent to some of us. Just as Oswin had questioned the empty hours of life on wards, Melanie and colleagues at Harperbury Hospital School were questioning a curricul...

Table of contents

• Cover
• Half Title
• Title
• Copyright
• Dedication
• Contents
• Acknowledgements
• Contributors
• Preface
• 1 Changes in the lives of people with profound 
intellectual and multiple disabilities
• PART I Belonging in education
• PART II Belonging in research
• PART III Belonging in communities
• Index