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Let’s start at the beginning. Consider your response to some apparently simple but literally ‘vital’ questions. Indeed, we would ask you to start this book by writing down your responses to these fundamental questions. Although they are essentially ethical questions, they have an impact on the many practical matters that are addressed later in this book, including the ways in which we, as individuals and as professionals, relate to people with learning difficulties – examples such as the murder of people with learning difficulties, their abuse in regulated services as well as in the community, their experience of enforced sterilisation and terminations, their over-representation in the prison population and the under-responsiveness to their needs by the healthcare system – all these indicate the importance of addressing what it means to be a person:

• Are all human beings people?

• Are all people ‘equal’?

• Or are some, to use Orwell’s words, ‘more equal than others’?

It might seem odd to begin our exploration of ethical issues in the way that we relate to and support people with learning difficulties by looking at the question of what makes a person a person, but this question is important for three reasons. First, because we are clear in our minds that whatever we do in relating to people with learning difficulties should start from the same place as how we relate to anyone else – from recognising the ways in which we are similar to one another, rather than the ways in which we are different. Second, because some influential thinkers have, from time to time, written in a somewhat cavalier way about people with learning difficulties.

The first years of the new millennium were a defining period in the history of services for people with learning disabilities. The closure during these years of the few remaining NHS long-stay ‘mental handicap’ hospitals, many of which were built in Victorian times, signalled a new era of optimism characterised by services that aspired to be socially inclusive rather than exclude people hitherto ‘warehoused’ in such institutions – out of sight and out of mind. These closures drew a line in the sand – never again were disabled people who were vulnerable to be treated as less than human and subject to the scandalous practices of the 1960s and 1970s that had taken root in these institutions and that had led to their ultimate closure (Martin, 1984; Stanley et al, 1999; Butler and Drakeford, 2005). So for people with learning difficulties, their families and professionals alike, the television Panorama programme about Winterbourne View hospital was more than shocking; it was a body blow that ‘recalled the endemic abuses which are known to have existed in the long-stay hospitals of the past’ (cited in Flynn, 2012, p 14).

In this section we take a brief look at the history and discrediting of institutional care for people with learning difficulties, with a view to understanding just how ‘devastating’ the ‘scandal that unfolded at Winterbourne View’(DH, 2012b, ministerial foreword) was in the context of a presumed modernised and humane service system. This ‘scandal’ constitutes a reminder for professionals as well as politicians, of how fragile the apparent progress of the last 50 years can be in the face of persistent and discredited service models, and negative attitudes to people with learning disabilities.

The evolution of the policy, legal and ideological context in which services for people with learning difficulties services have developed over the last century has been accompanied by the development of a number of influential conceptual frameworks. The list above is not comprehensive; for example, inclusion and universalism are two other important sets of ideas that are not explicitly examined here, although they do provide the context for much of the discussion.

Our list of conceptual frameworks above falls naturally into two groupings. The first three ideas – normalisation, the five accomplishments and the social model of disability – can be seen essentially as a response to, and a critique of, the institutional model of services, not only the old long-stay ‘mental handicap’/learning disability hospitals, but also other prevailing community-based congregate services. They are essentially concerned with reform and improvement of existing services.

Arguably, the second set of ideas is much more challenging. Personalisation and co-production have emerged and grown in strength, as the process of deinstitutionalisation and ‘community presence’ has failed to fully deliver on participation and community integration. Taken together they are concerned with achieving radical transformational systems change.

The concept of normalisation (Wolfensberger, 1972) emerged from earlier work in Scandinavia (Nirje, 1969). It was (and is) a seminal idea in the field that informed all subsequent developments, and it is still a philosophy that is both referred to and argued about today. The impact of Wolfensberger’s thinking about the importance of deinstitutionalisation and how to achieve it, and his legacy for current thinking, cannot be underestimated.

Martha is nearly 15 years old and has learning difficulties. She attends a mainstream secondary school and receives additional classroom support there. She is shy, and has not made as many friends at school as she and her family hoped she would. A person-centred transition review meeting was arranged to specifically look both at her immediate future and at her longer-term future, and how everyone could work together to ensure that any plans made were rolled out as smoothly as possible. Martha’s mum, Dorothy, hopes that her daughter can go on from school to do some courses at a local college.

Going into the meeting, Dorothy’s first concern was to get everyone working together to look at Martha’s transition from school to college, and from children’s to adult services. Dorothy hoped it would be possible to look at some real long-term supported employment options that would be available, and to talk about how these could be implemented smoothly. She was feeling worried about getting forced into discussions about possible future living arrangements as she felt there was still plenty of time to think about that at a later date, although she accepted that this would have to be addressed at some point soon.

It was intended that the transition review should address the following questions:

• What is possible for Martha in the future?

• What does everyone involved want Martha’s future to be like?

• What is going to be done to work towards this future?

The review was attended by Martha’s family, including her mum and dad, two friends from school, her support workers, her teacher, her speech therapist, a staff member from the Careers Support and Information Service, a social worker and a social work manager.

Leaving home is one of the biggest life changes that a person with learning disabilities will make, so it’s important to spend time considering what they would like, and what kind of life their family carers envisage for them.

Many people with learning disabilities are able to express clear views of their own, and it’s important that those involved talk to and involve them in planning for them to leave home. In addition to parents, there may also be other people, such as grandparents, school teachers and others, who know the person well and who can be helpfully involved in the consultation.

Some parents may always have envisaged their son or daughter leaving home when they became an adult; others may have planned to continue caring until ageing, illness or other difficulties make it impossible for them to continue in their primary caring role. Whichever is the case, for most parents, being a carer has been a positive choice and an enjoyable experience, and they may be reluctant to start even thinking about change. All parents tend to feel anxious when their children leave home, and change can feel daunting, even when it’s likely to benefit everyone in the long run.

By engaging in planning and preparing for a move it is more likely that the person with learning disabilities will get the right kind of housing and support. It can take a long time, even several years, to find the right home and the right support. What is clear is that waiting until serious illness or some other family crisis forces parents to act quickly will almost certainly mean that there will be fewer choices and less time for everyone to get used to the idea.

Why the f**k would I want to go there [ATC]? We were treated like weans and the staff called the shots. We had to call the centre manager Mrs Smith while she called us by our first names. We did the same old things every day. Boring. What was the point of them? Now they have a resource centre and everybody goes out in the community. I see them walking up and down the shopping mall. Guess what? They are even more bored now. (Heartfelt associate, 2012, personal communication)

I liked going to my centre in Glasgow. I felt respected, and that was where my friends went. Had gone there for years and the next thing, the council closed it down. No more centres they said, but no one asked the people who went there what they thought. No one helped us stay in touch and I lost most of my friends. Did they think that having friends who had a learning disability wasn’t a good thing? (Heartfelt associate, quoted by Hunter, 2012, personal communication)

What are we to make of these two quotes? The speakers are talking about day centres which, until very recently, were the main option for daytime activity for people with learning difficulties. In fact, attendance at a day centre, from leaving school until ‘retirement’, could be the only service on offer, apart from no service. What these quotes tell us is that for some, attendance at day centres was ‘boring’, but that it could be equally boring spending time wandering around shopping centres in the name of ‘community care and inclusion’.

We do not know how many adults with learning difficulties are also parents. Estimates are variable due to lack of consistent definitions of learning disabilities, and uncertainty about numbers of adults not known to services, although one study (Emerson and Hatton, 2005) found that in their large sample, 7 per cent, or 1 in 15 adults, were parents.

The emerging profile of parents with learning difficulties in the literature is a recent phenomenon. As community living has replaced institutions, expectations have changed, and individuals have aspired to be parents as well as householders and employees.

We know that parents with learning difficulties are disadvantaged when they come into contact with the public child care system (McConnell et al, 2002; Swain and Cameron, 2003; Elvish et al, 2006). Booth and Booth have claimed that presumptions of incompetence result in decisions to remove a disproportionately high number of children from parents with learning difficulties (Booth and Booth, 2003). They are also more likely to lose their children to state care, and despite the policy emphasis on kinship care, their children are less likely to be placed with extended family members (Booth et al, 2005).

• Internationally, 30-40 per cent of parents with learning difficulties have their children taken into public care.

• In the UK, between 40 and 60 per cent of their children are removed.

• Mothers with learning difficulties living on their own are more likely to be without their children than if living with other relatives.

• Only 10 per cent of children removed from a mother with learning difficulties were returned.

Consider the stories of the following five people with learning difficulties. They are all the same age, but have had different experiences.

It seems that Billy has a person-centred plan and is being assisted to take advantage of unpaid support and to be part of a valued community and business facility. He sees himself, and is seen by others, as a talented artist and is a member of the studio artists collective. He is no more or less disabled than Margaret, but she has a much less inclusive life. She may have been a victim of circumstance, and in a time of crisis ‘placed’ inappropriately as a person still in her fifties in a residential care facility that had a ‘void’.

Neither Ella nor Alice have experienced institutional life. They have both lived their whole lives in the community. Ella, however, has had a very restricted social life, and she and her mother are now in a situation of double jeopardy, with Ella now effectively the primary carer. It is likely that no plans have been made for either of their futures, and they would both benefit from the creation of a circle of support, with some of the energy of the circle being put into the facilitation of a clear future plan for Ella. There may be complicated questions of capacity to be addressed, and it is the sort of situation that should really be tackled much earlier so that a will, discretionary trusts and powers of attorney can be effectively arranged.

The chapter is divided into four sections in line with these four themes:

• capacity

• risk

• recognising abuse

• protection from abuse: safeguarding.

… giving people choice without sufficient support merely sets them up to fail (and massively increases risk). Thus, the assumption throughout is that people need meaningful support to think through and exercise choice, and that this support needs to be just as tailored to their needs and individual circumstances as their subsequent ‘services’…. Personalisation can be a way to improve safeguarding and can enable positive risk-taking – but only with adequate and tailored support. (Glasby, 2011, p 14)

If individuals are deemed not to have capacity, choices are likely to be limited, and not only in law. Research suggests that those areas of choice practised by people with a learning difficulty tend to be domestic and associated with daily living (Stalker and Harris, 1998), such as what to wear or the selection of television programmes, rather than impinging on the big decisions in life, such as where to live, how to spend money, or whether sterilisation can proceed or not. However, recent developments in both legislation and policy have enabled a wider repertoire of responses from professionals.

What is meant by ‘capacity’, and why, in general, is capacity such a central concept in professional practice?

Historically, the capacity to make decisions was seen as a ‘fixed’ characteristic of the individual, and people were deemed either to possess this capacity or not, irrespective of circumstance. We now think of ‘capacity’ as the ability to take particular decisions, and to act on them at a particular time.