Life for adults with Down syndrome – an overview

Roy Brown

Summary — This book is an introduction to the Down Syndrome Issues and Information: Adult living series and considers issues affecting people with Down syndrome, aged 17 and above, their families and communities. This book takes a lifespan perspective, and considers how experiences in the past and in the present will impact on choices, opportunities and development in the future. It shows how all aspects of the individual’s life are linked together and that changes in one area may have an effect in another. As an introduction, it sets the scene, through an examination of our values as a society and introduces the reader to a variety of useful approaches, including quality of life, inclusion and exclusion, and rights and discrimination. The book concludes by introducing the specific issues raised in the other books in the series. Although a wide range of needs are addressed and recognition is given to the different circumstances of community living, this overview also recognises that life is not just about assessment and intervention, however important these may be, but is essentially about living life to the full, minimising barriers and maximising opportunities. References are provided, but detailed journal referencing for specific areas has been largely left to the other writers in the series. The aim of this book is to provide references to books, articles and websites, which should be readily available to parents, associations and practitioners across many disciplines.

Brown R. Life for adults with Down syndrome - An overview. Down Syndrome Issues and Information. 2004.

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Editorial foreword

I was very pleased to be invited by Sue Buckley to edit this series. It is directed to parents and professionals who would like to know more about the lives and needs of adults with Down syndrome. With this in mind, I have asked authors from various countries to write the books and we have attempted to raise the important issues for individuals across the adult lifespan and their families. The literature on adults is relatively sparse compared with that written about children with Down syndrome. In the present series we have attempted to provide the latest information along with reference material and websites where further information can be gained.

In the introductory book, I have attempted to give an overview along with some key references which should be reasonably easy to obtain. Readers will see a brief overview of the various books in the series, but for detailed information they will need to go to the specific books. It is recognised that the views expressed will be those of the authors and an attempt has been made to recognise different approaches and attitudes in various countries and communities. However, it is necessary to stress that if adults are to develop their abilities and skills and become increasingly independent, values and beliefs are likely to be challenged along the way. Therefore, it is hoped that these books will not only provide a source of information, but will also challenge current thinking and encourage progress.

Each book has been anonymously reviewed and comments taken into account by the authors. I am grateful to all the reviewers, who included professionals and parents of people with Down syndrome, for their comments and suggestions and most of all for voluntarily giving their time to this project.

At the time of writing around 40 authors are involved in writing the books in this series. These authors come from 12 countries, and they have obtained information and comment from many other countries. The books centre around material written in English, but it is hoped that, through reference and commentary from parents and professionals in various countries, readers will obtain a global perspective. Finally, I hope this series will be stimulating and practically useful.

Roy I Brown

Adult Series Editor

Introducing adults with Down syndrome

John’s story

When John was 42, he had a full time job at a gas station and owned his own home. After many years of employment, he had saved a considerable sum of money. He bought a car and a camping trailer and frequently drove it into the mountains to camp and go fishing for trout. When his mother became ill, he invited her to his home and she lived with him for her last years, and he looked after her.

Debbie’s story

Debbie was 39 when I met her. She was an able woman; she had a job and carried out volunteer work for the local Down Syndrome Association. She was good at keeping records, and was an attractive public speaker at local and international conferences. She married when she was in her twenties and although her marriage lasted for several years, she eventually divorced. She did not regret her marriage. She said she had learned a lot about life as a result but did not wish to marry again.

 Françine and Andrew’s story

Françine and Andrew married 3 years ago and have their own apartment. Their marriage is a happy one. She is the leader in the family at a social level: she invites friends to their home and encourages her shy husband to take part in their social life. They share the tasks around the home; she prepares the meals and they go shopping for food together each week. They are often seen in town, holding hands, as they make their way home from the shops. Françine likes to shop and she is proud of their home. She likes to show friends her photos, particularly her wedding photos, at which point she shows off her wedding ring. Françine and Andrew are viewed as a very happy couple, much in love and content with each other’s company.

José’s story

When José was 42, he wanted a job in the community and to gain respect from others. He was offered a part-time job at a food store. His job was to collect food carts from the parking lot and place them in neat rows just by the entrance. He was cheerful and made appropriate contact with customers and they often commented favourably to the other staff about José’s ability. The trouble was, there was no full-time position for him. The manager understood José’s wish, and he talked to a fellow manager at another food chain on the other side of the town in which José lived. He got a similar job there on a part-time basis. His new manager was pleased to have José on the team; he described him as cheerful and keen and felt that he tended to make others happier when he was around. Although José only received minimal wages for each of these jobs, this enabled him to move into rented accommodation. He was able to find a suitable place to live and shared his home with a friend, Hatem. They shared tasks in the home; Hatem did much of the housework since José was out four and a half days a week on one or other of his part-time jobs.

 Identifying the issues

All of these adults have Down syndrome. However, these brief vignettes do not tell us the full story of their lives to date. John lived for many years in an institution before he joined a rehabilitation programme that allowed him to gain the skills that helped him to find employment at the gas station. It is obvious that John’s quality of life was greatly improved once he left the institution and came to live in the community. The question remains, why was he sent to an institution in the first place, and why was he certified, to use the historic language, as mentally retarded? At the time, a government department thought he should be certified because he had Down syndrome, although that order was eventually revoked.

When Debbie was young, she always wanted to do what her sister had done. It was a great source of sadness to her that she did not go to a mainstream school because she had Down syndrome. When she thought about this, it distressed her greatly. Although Debbie is now able to lead a happy adult life, included within her community, carrying out meaningful work in a job that she is good at, one has to ask how has the segregation she experienced as a child affected her self-esteem and personality as an adult?

Françine and Andrew are a happily married couple but they are among a minority of adults with Down syndrome who marry. This book explores the reason for this and invites the reader to consider the advantages that partnership can bring to the individual.

José lives in the community with his friend Hatem, who also has a disability; they support each other. José has the dignity that comes with living in one’s own home and making the choice to share it with a friend that he likes. Not every adult with Down syndrome has the chance to gain self-esteem and dignity in this way. Although independent living is not a realistic option for all adults with Down syndrome, if people are to have a desirable quality of life they must be allowed to make choices and be given opportunities to be responsible for the direction that their lives take.

Introduction

It is a tribute to parental concern and advocacy, health care and educational development, that it is now not only possible, but extremely important, to write a series of books about adults with Down syndrome. This series of books is about the status of adults with Down syndrome, their successes and their challenges. It is about maximising their potential. The books aim to describe the circumstances and needs of people with Down syndrome, aged 17 years and upwards, through their life cycle of young adult to middle aged and older adult.[1]

By their late teenage years, individuals with Down syndrome vary widely in terms of their health, abilities and behaviour. Their life experiences and their successes cover an enormous range from those who are Special Olympic champions to those with mobility problems; from people who gain qualifications at universities and colleges to those who have little or no education; from those who are in care facilities to others who are married and enjoy a typical adult life. Some are painters, dancers and actors, whilst others work in fields such as horticulture, catering, printing, retail, administration and in health and social care. Some adults put together a series of unskilled or semi-skilled part-time jobs, while others remain at home without employment or attend sheltered workshops of one kind or another. This series attempts to cover this broad range of behaviour, success and challenge, recognising that most adults still do not yet have the opportunities, nor are expected to function effectively in society. The books build on many of the proposals stressed in the conclusions of the Sixth World Congress on Down Syndrome relating to adolescents and adults, including the importance of the quality of life model.[see 2] The box provides a summary of some of these proposals.

The series covers a number of interrelated areas and, although each book in the series may be read separately, it should be stressed that modern approaches to adulthood recognise the importance of enriching each aspect of life with a view to supporting other areas of living. Different aspects of a person’s life tend to be interdependent, e.g. health is related to leisure and recreation, and recreation relates to employment, community living and friendships.[3] The full series will include books on:

• Reading, writing, numeracy and language in adults with Down syndrome
• Further and tertiary education for adults with Down syndrome
• Transition to employment for adults with Down syndrome
• Independent living for adults with Down syndrome
• Leisure and recreational activities for adults with Down syndrome
• Relationships for adults with Down syndrome
• The family and adults with Down syndrome
• Issues for women with Down syndrome
• Mental health and emotional well-being for adults with Down syndrome
• The elderly person with Down syndrome
• International and cultural aspects of Down syndrome
• The law in relation to the adult with Down syndrome
• Drama and the arts for adults with Down syndrome
• Advocacy and adults with Down syndrome
•  Spiritual well-being of adults with Down syndrome
• Information communication technology for adults with Down syndrome 

The areas covered within the series are not in order of importance because each supports the other. Although most of us regard health as a critical issue, good health is unlikely to be lasting if the other areas of living are not appropriately addressed. Wherever possible, the books will include references to accessible further reading and to websites containing important and reliable information.

This series of books encourages readers to take a ‘quality of life’ approach when considering the needs of adults with Down syndrome. This approach has been developing in recent years in the field of disability and it has great relevance for individuals with Down syndrome, their families and those providing services. Interestingly, a quality of life approach has generally been applied to the provision of services for adults rather than children, where there is also a need for such an approach. Although many of the early ideas were conceptual and research-oriented, it is necessary at the practical level to apply the ideas with clear structure and appreciation of their potential.[3]

This book introduces the quality of life approach and helps the reader to focus on the perceptions of the person with Down syndrome as one of the keys to successful and appropriate support. It encourages us to take a holistic view, to consider all aspects of the individual’s life and how changes in one area of life can influence another. It prompts us to reflect on how past and present interact across the lifespan and how quality of life in the future is determined by the ability of family members and professionals to identify relevant issues in the present. The series is underpinned by the belief that the behaviour, development and ability of adults with Down syndrome to fulfil their potential is shaped by their social environment. This book explains how parents, siblings, support workers, therapists and significant others can, and should, work together with adults with Down syndrome to provide an enriched and inclusive environment that will foster the development of a positive self-image and increase self-esteem and quality of life. The book explains the processes of social inclusion and exclusion, and describes how societal beliefs, attitudes and values can restrict the basic human rights of adults with Down syndrome, for example to explore and express their sexuality. The latter sections of the book introduce a range of challenging issues affecting adults with Down syndrome. These are explored in detail within the other books in this series. This book aims to unite the individual issues through examining the common theme of increasing quality of life for the individual and their family, and recognising that confronting challenging issues at any stage in an adult’s life (but particularly earlier rather than later) can enhance their future opportunities.

Quality of life

Changing attitudes and expectations

During much of the 20th century, it was commonplace in Europe and North America to place people with Down syndrome into institutions. It has been common in the past to discourage their survival as infants, particularly if they experienced heart problems or intestinal blockages. Even today, in what we regard as advanced societies, these problems arise. One of the author’s post-graduate students, a medical officer, came across instances where personnel did not seem to try as hard to keep people with Down syndrome alive and/or did not recommend medical intervention, apparently because the individual had Down syndrome. This kind of discriminatory practice was undoubtedly the driving force behind campaigns such as the UK Down Syndrome Association’s Health Alert campaign, in 1999, one of the objectives of which was "to improve the education and training of health professionals and medical students to ensure equal access to health care". ^{[4: p.10]}

Young people with Down syndrome living in some institutions in the US and Canada used to be sterilised as part of government recognised policies. This practice continued into the last half of the 20th century. In other words, in countries that promoted human rights and developed universal systems of health coverage, exclusion was practised against people with Down syndrome at a very basic level. There are still some societies where children with Down syndrome are sent away from home. There are advanced societies that will not allow people to immigrate into a country if they have offspring who have Down syndrome. In some countries there have been, or are, restrictions against people with Down syndrome marrying. In the area of employment, there is often little understanding of people with Down syndrome, although we will see that the picture is changing. It appears, therefore, that we are still moving from an exclusive to an inclusive society, and we have far to travel.

There are many forms of intervention and possibilities for enriching and extending the experiences of individuals with Down syndrome. Good medical practice has provided increasing health care to people with Down syndrome. This has not only resulted in better health at each age, but has also increased life expectancy, although this is still lower than it is for individuals who do not have Down syndrome.^[5] Educational opportunities have improved; however, the quest to raise professionals’ expectations in this field and others is certainly far from complete. We can intervene socially and, although significant change is still fairly recent, the move from institutions to semi-independent or family living has been an important step forward. It has raised health standards in many instances and also increased longevity. As a rule, the closer the support person, in terms of relationship to the individual, the more likely it is that the individual will be nurtured and supported long term.

Quality of life and adults with Down syndrome

A quality of life approach has been adopted in the examination of many areas of human experience. Some people are interested in the quality of life of large populations, whilst others have used quality of life to focus on the health services delivered to individuals and their appropriateness in relation to cost. Others are motivated by the way in which principles of quality of life can improve all aspects of a person’s life including their social, emotional and intellectual development, but particularly from the individual’s own point of view. It is this last approach that probably has the greatest resonance for people with Down syndrome, their parents and a broad range of professionals.[see 6] This approach aims to view disabilities in a new and integrated fashion. It places the emphasis on personal perception, i.e. the viewpoint of the individual with a disability. This notion is relied upon, along with an emphasis on respecting people’s choices and wishes, including the choices of those who have no or little language. It is believed that perception and choice play a major role in the development of self-image. Other features include the notion of holism, as one cannot function fully within a society that only recognises one aspect of the individual. This view is a critical one, not only in terms of multidisciplinary practice, but also in terms of community living and home support. Vocational success may be reliant on factors such as leisure resources because this is the way particular individuals may structure their lives. Thus, this quality of life approach relies on individual input and works through the individual’s choices and perceptions. Another aspect of quality of life is the need to take a lifespan approach to the person in terms of their disabilities. What happens to a child dramatically affects what they may or may not do or experience later in life. This approach relies on the integration of a number of concepts, which are described further in this book, such as social inclusion and social role valorisation. The latter is concerned with assisting people with intellectual disabilities to assume meaningful and valued social roles within the wider community.[7] In summary, the quality of life approach and allied concepts provide a framework in which to consider current professional practice, ethics, service development and delivery, and policy.

This concept of quality of life as a research area has been developed mainly amongst adults with intellectual disabilities and only recently has work with children been carried out. The special edition of Exceptionality Education Canada, published in 1999[8] provides several articles underscoring the importance of this approach with children. The application of the quality of life approach to adult services is becoming quite well established. Its fundamental concepts have not yet been rigorously applied in schools, homes or community, although aspects of it are seen in the work and behaviour of forward-thinking personnel and parents. The absence of its application makes the lives of adults more difficult and challenging, and it is important that such ideas are applied as early as possible.

A comparison can be made with medicine. Before the science of medicine existed, there were caring people who did what they could for people who suffered from disease and trauma. It was only when knowledge was increased through observation and study, and trial and error, that a body of scientific knowledge arose, which is now applied throughout much of the world. Social and behavioural aspects of the quality of life approach have followed a similar course. Humanitarian and concerned people apply aspects of the approach, but only now is a body of knowledge emerging, which can be applied in a consistent manner.[3]

The quality of life approach provides a framework that encourages us to think about people with Down syndrome in new ways, e.g. focusing on assets rather than deficits and viewing the beliefs and attitudes of society as disabling rather than the syndrome itself.[9] These new perceptions are aided by the application of ‘normalisation’, an approach that advocates supporting adults with intellectual disabilities and/or mental health problems to live a life that is as similar to other members of the wider community as possible. These new ways of thinking also require the application of inclusive practices. These approaches to supporting adults with Down syndrome require marked changes in the environment and in our thinking, attitudes and behaviours. Quality of life involves these concepts and more. To illustrate this, it is necessary to say what quality of life is about, or at least describe how it is increasingly seen as a useful approach for adults with Down syndrome. Although quality of life is difficult to define, it may be usefully described through a number of ideas. Quality of life relates to a person’s well-being and some authors have suggested it is the discrepancy between what an individual has and what they want, it is a ‘needs discrepancy’. At a fundamental level, we can relate this to Maslow’s hierarchy of needs.[10] Essentially, Maslow identified that there are some basic needs which must be satisfied before other needs can be addressed. These basics are concerned with food and shelter through appropriate housing, and issues such as comfort and clothing for warmth and protection. At a higher level, social and educational needs include social contact, friendship, employment and a range of creature comforts. The ideas of Rebecca Renwick and Ivan Brown[11] also capture key themes within the quality of life approach in terms of “being, belonging and becoming”. When people with Down syndrome are ‘being’ they are ‘existing’; their basic human needs are being satisfied. To feel that they ‘belong’ they have to be included in their community, with regard to education, employment, social, leisure and recreational opportunities. In order to ‘become’, people with Down syndrome need to be given the opportunity, and the support, to recognise and fulfil their potential. It is necessary to keep these ideas in mind throughout this series of books. They are also addressed in more detail later in this book.

Objective and subjective components

Quality of life is regarded as both objective and subjective; part of it can be observed and measured by external means, e.g. whether one has sufficient food or adequate shelter, but major aspects also relate to the subjective perceptions of the individual. It is this aspect that may be of particular interest in understanding the quality of life of people with Down syndrome. Does the person feel happy and secure, safe or afraid? What do they think about their friends? Do they feel secure or good about themselves? These are largely personal perceptions and, although aspects may be measured externally, they are to a large degree internal and personal aspects of life. Researchers have long puzzled over how to measure or assess these attributes and the more work is done, the more complex the concept appears. It is important that this complexity is portrayed. There are many questionnaires for assessing an individual’s quality of life[12] and guidelines to help interpret the information.[10] Some have been designed so that they can be used with people of varying degrees of disability. The results inform us about a person’s lifestyle, needs and wants from minor to major areas.

There are a number of practical principles relevant to a quality of life approach, and these are described by Brown and Brown.[3] They include:

• listening to the person’s stated perceptions, stated in talking, in gesture or other non-verbal behaviours

• listening to and observing the individual’s own choices

• providing opportunities for individual choices

• considering how activities, experiences and behaviours are linked together

• considering the lifespan implications of any behaviour or actions by the individual, parents, professionals or relevant others

• taking into account how situations or actions may promote positive self-image

• recognising that adults with Down syndrome are individuals with widely varying needs, interests and abilities

• recognising that the needs, interests and abilities of specific individuals can vary over quite short time intervals

The importance of perception

 Perception refers to the individual’s personal mental images and interpretations of people, events and experiences. We interpret the world according to present and past experience, motivation, cultural differences and our expectations for the future. How and what we perceive causes us to behave in particular, and specific, ways. If John with Down syndrome does not feel safe at home, at school, or at work, then behavioural issues may arise. In such circumstances, John will not feel good about himself. Self-image is likely to become more negative, behaviour may regress or he may become socially withdrawn.[15]

It must be understood that perceptions are not intended as accurate measures of reality, but are manifestations of a person’s beliefs and feelings. They may or may not reflect outside reality. Many clinicians have therefore regarded them as unhelpful and of little consequence. Parents have often disregarded them because they were thought to be incorrect and, therefore, unimportant. However, such perceptions are often the most important things about us and they influence our behaviour. Unless we take them into account, we cannot effectively help the person.

In Susan’s case (see box), one can see that increasing the locks and the staff will not change Susan’s feelings. In fact, it may increase them! The people who work and spend time with Susan need to become more aware of Susan’s feelings and accept them as valid expressions of her thoughts and emotions. They need to listen to Susan and explore ways in which she feels she can be helped to feel safe. This may include giving her more personal control of her environment or it may mean reassurance from those whose friendship or support she most appreciates. It is also likely that her anxiety will vary, increasing when she is more stressed or tired. People need to take all of this into account.

The notion of perception is critical to quality of life[see 3] and we shall come across it time and time again in our discussion of issues affecting adults with Down syndrome. Perception affects many aspects of our behaviour. It is important to note that a person’s perception of him/her self, that is their self-image, can be influential in determining behaviour, expectations, and perception of events and other people. In a longitudinal study of quality of life, Brown, Bayer and Brown[16] found that a quality of life model helped people to improve in areas in which they had received training, such as travel around town. Importantly, it also helped people to improve in areas in which they received no direct training. The latter is commonly referred to as generalisation, and is thought by many not to occur or to be uncommon in people with Down syndrome.[17] The authors suggest that it was because of the application of a quality of life model to the training that individuals were enabled to improve their self-image and feel better about trying things, which previously they would not have dared attempt. It relates clearly to Ivan Brown’s suggestion that quality of life relates to “being, belonging and becoming”, an idea related to perception by the individual and the necessary involvement of inclusive practices. A related issue, and one which adds dignity to the individual, is the need to overtly recognise the individual’s own perceptions, affording dignity to their views. Until we can do this, it is unlikely that many major changes can be brought about. This requires that we do not accept the proxy views of professionals or parents in lieu of the individual’s own point of view. The views of others require respect and recognition, but should not be viewed as equivalent to or necessarily the same as the views of the individual with Down syndrome. Progress and development are more likely when the perceptions of the adult with Down syndrome are central to any professional discussion with regard to provision of services or resolution of problems. This may well involve skilled counselling and advocacy to ensure that the views of the adult with Down syndrome are upheld accurately.

Determining the perceptions or feelings of people with poor speech or no language can provide a particular challenge. In such instances, we can find out how people feel, and what they like or dislike by observing them in various situations. Sometimes videotaped recordings are made to illustrate such behaviour.[18] These observations can help service-providers to offer appropriate choices or adjust the environment, to make it more accessible, and this can often lead to major changes in behaviour.

Choices and opportunities

Quality of life involves the principle of choice. If we give choices and opportunities to people with Down syndrome, we begin to understand what interests them. They begin to have control over their environment. In psychology, this is referred to as having an internal locus of control as they start to consider possibilities and make decisions for themselves (rather than having others make decisions for them). Ideally, the choices and opportunities need to start early in life so that the opportunities can be expanded. Once again, however, it is never too late to start. The access to choices should be on a graduated basis, relating to development and increasing experience.

Does a person function under their own values, ideas, and knowledge (internal locus of control) or do they function under other people’s control or does the person just ‘do what they are told’ (external locus of control)? The former causes some parents discomfort. Some parents and professionals perhaps do not appreciate the importance of choice for teenagers and adults. I have met parents of children with Down syndrome who come to me and say, “I thoroughly enjoyed your lecture, but I do not believe in choices for children.” It is important to understand that free choice over everything is not being suggested, but increasing choice as one develops should be encouraged. Extreme or unsuitable choices should be acknowledged and accepted as the individual’s perception and he or she should be encouraged to explore such choices in the context of effective counselling and guidance. He or she should be helped to recognise the implications of such choices. This aspect of learning is important in developing problem-solving skills and personal control. It may be necessary to help individuals to consider other relevant and related ideas, which they may find challenging, but still within their reach, even if not their grasp. This issue is a complex one because so many individuals make decisions for adults with Down syndrome and often decide they cannot do an activity of choice. This often removes new learning opportunities and restricts individual progress. This is why we need to accept the person’s choices, explore the possibilities, provide support, and if and when problems arise, guide them, with their acceptance, through a number of developmental stages. When people are denied the right to make choices, a state known as learnt helplessness may arise, whereby people no longer try to influence their environment as they have learnt that they have no control. This state affects mood, cognition and motivation and the theory has been used to explain depression.[19]

 Further, many governments and agencies do not apply the concept of choice adequately. Sometimes they think choice is about large arrangements and procedures, policies and systems, and therefore unattainable, because the government department or agency has to be in control and decide what is offered. However, choices frequently involve small things and much of the work in the field illustrates this. Choice may relate to what game a person likes to play, who the person likes to go out with, and whether they, for example, go bowling or stay in to watch television. Of course, the choices may be of greater long-term consequence, such as what employment interests the individual[15] or whether they want to set up home with friends or a partner, or to live on their own. Some parents do not regard such issues as possibilities for the person with Down syndrome. One parent, known to the author, on observing the positive and friendly relationship between two young adults, one with Down syndrome and the other with a different disability, commented, while laughing, “you would think they were normal adults”. Their behaviour was that of normal adults and deserved the respect that should go with this.

Variability

Sometimes parents and professionals may think certain achievements are not possible for people with Down syndrome. Sometimes they are not and sometimes they are. Each adult with Down syndrome is different and, just like any other individual, they vary widely in needs and abilities and they vary within themselves across time. This concept of variation means there is a strong need for individualised planning and delivery of programmes.[3] The intellectual abilities of people with Down syndrome vary immensely. Some adults may only have a moderate degree of intellectual disability but they may be greatly handicapped by their experiences and their environment. Whichever the case, the degree of intellectual disability or environmental handicap will be increased or decreased depending, in part, on opportunities and choices. Individuals need to have choices commensurate with their current levels of functioning. I use the word ‘levels’ because the profile of ability in any one adult with Down syndrome may be very diverse. There are advanced behaviours in some areas and low and limited performance in others. Indeed, it is critical that we stress a person’s assets and abilities.

Holism

One of the important principles of quality of life is the idea of holism. That is we must see the person with Down syndrome in the context of their whole life, because various aspects of life influence one another. If a person with Down syndrome has a balanced leisure lifestyle, they are more likely to obtain and keep a job. Having a job means one is more likely to develop adult friendships. In other words, it is the rounded experience of life, which leads to an integrated and effectively functioning adult.

Amongst people in the general population, we know that people live longer and healthier lives if they have well balanced lifestyles. Married and partnered people live longer than those who are not. Health tends to be better if people having a close and caring person involved with them. It is therefore critical that we design environments and opportunities so that adults with Down syndrome experience a well-balanced life. Not all will be successful at everything, but it can be expected that most will grow and develop more effectively if this occurs. The books in this series are directed to different aspects of life. It is critical that readers recognise that it is the integration or these ideas and experiences, which is likely to be most effective. This should lead to the encouragement of a well-balanced lifestyle along with adequate community involvement and leisure, recreation and employment.

Lifespan

It is critical that we have a lifespan approach to Down syndrome. What occurs at one stage of development is going to affect other stages of development. If the young adult has had an inclusive education, or an education directed to functioning in the community, then gaining employment is likely to be easier. It may be possible to modify experience and learning at later stages, but the more we leave for later stages of development the greater the challenge that will be encountered.

One of the challenges associated with lifespan is the difficulty it raises for parents and professionals. It is very much influenced by the values of a family and the values of individual professionals. Such values can have profound effects on people with Down syndrome. For example, the mother of a newborn child with Down syndrome, who is told that her child may never learn to read, write or even speak, might, if she believes this, change her responses to the child. One mother said to the author, after meeting with a married couple, one of whom had Down syndrome: “I did not think my son (then aged six months) would have any chance of a normal life until I met this couple tonight”. At six months, this mother had a profound experience, which would alter her attitude to her child at each stage of his growth and development. A father said to the author “until I heard that some adults with Down syndrome married I thought my daughter would remain a child all her life”. These experiences change not just the parent’s perceptions, but also the environment in which the person with Down syndrome lives.[17-18]

There are two main aspects relating to lifespan issues. Firstly, the lifespan is made up of events that have occurred in the past and current events in the present. The present has to be the starting point. Fortunately, although major opportunities for many have passed, learning can still take place. Previous experiences may have been negative and some unlearning may be necessary. For example, if the young adult has not had an opportunity to experience inclusive schooling or community involvement, there will be a wide range of experiences to catch up on.

The second aspect relating to the lifespan is to recognise that the young adult has many years ahead of him or her, and planning and building for this is important. We need to ask what he or she will need in the future and this will depend not only on what the individual hopes for, but also on how other responsible adults behave.

One can see from the comments above that quality of life in the future depends on recognising the issues faced by the young adult. Quality of life in adulthood will be enhanced if these issues are taken into account and planned for from birth.

Transition as a lifespan issue

Lifespan issues for adults will include transition from school to adult living. In many communities this constitutes a challenge, although there is a real possibility that many adults with Down syndrome are able to work. This can be a challenge for prospective employers. Further, the leisure and recreation carried out at this point in time will influence opportunities in the future. The design and development of living options will be critical and issues relating to friendship, partnership and marriage will emerge for a number of young adults. Emotional changes will continue to occur and aspects, for example, of sexuality will need to be addressed further. Very often, this subject has been left for too long, and individuals feel their needs and wants without, at times, the knowledge or experience to deal with these challenges. Thus lifespan issues direct us to considering not just the here and now, but the long-term issues for people with Down syndrome. Major transitions for the adult with Down syndrome are not dissimilar to those experienced by adults without a disability and include the transition from school or college to employment, moving from the parental home to community living or own home, from relationships with parents to adult-to-adult partnerships that may well include marriage, and later in life, from work to retirement. There are also other transitions that may involve life changes and can be very distressing, such as the transitions that may occur when an individual loses a family member or close friend, who may have been a primary source of care and support, through death or hospitalisation.

Life expectancy and its implications

In Europe, people are beginning to recognise the fact that there are more adolescents and adults with Down syndrome than there are children, thus the need for knowledge, experience and practice at the adult level. This partly results from lower live births due to diagnosis of Down syndrome in the embryo followed by termination, but the main reason is the improved life expectancy of young people with Down syndrome into the late adult years. Early in the twentieth century, newborn children with Down syndrome did not, generally, live very long. In fact, the life expectancy in Europe was around ten years. Many babies died at birth, although some individuals reached adulthood. Today, most people with Down syndrome in the Western world can expect to live to 55 years of age and more. One in ten adults with Down syndrome live to 70 years. In many western countries, the life expectancy continues to rise, and this trend is likely to continue. The reader may wish to consult a chapter by Steele[20] or an article by Baird and Sadovnik[5] for more elaborate discussion.

This pattern of a large adult population, relative to the number of children, is likely to occur over time in all countries, yet services and training of our professionals, essentially focuses on children with Down syndrome. The issues for adults are to some considerable degree based on what happens during childhood. It is very important that every parent and professional knows what long-term possibilities exist as children with Down syndrome grow into adults, and it is a further reason why adult issues need to be for This pattern of a large adult population, relative to the number of children, is likely to occur over time in all countries, yet services and training of our professionals, essentially focuses on children with Down syndrome. The issues for adults are to some considerable degree based on what happens during childhood. It is very important that every parent and professional knows what long-term possibilities exist as children with Down syndrome grow into adults, and it is a further reason why adult issues need to be formally addressed by researchers, practitioners, service providers and policy-makers. This is the main reason for developing the Down Syndrome Issues and Information: Adult Living series. The body of research relating to late adolescence and adulthood for people with Down syndrome is increasing with time. Janet Carr, for example, conducted an important longitudinal study, linking childhood with adolescence and early adult development.[21] However, further lifespan studies are still required and longitudinal research looking at the individuals across the lifespan remains critical.

Issues of increasing lifespan

There are many issues linked to the increased life expectancy of adults with Down syndrome.[22] Living to 55 years and beyond requires:

• effective and knowledgeable health services
• early diagnosis of physical difficulties
• opportunities for further education
•  employment prospects
• effective adult community living environments
• leisure and recreation opportunities appropriate to age
• opportunities for adult friendship, partnership and marriage
• dealing with challenges of retirement
•  life planning, which includes the individual with Down syndrome in decision-making
• formal and legal recognition of a selected carer if the parent(s) are no longer able to fulfil this role; issues of trusteeship and guardianship need to be taken into account
• support in order to draw up a suitable will; this includes wills of the parent(s) and the person with Down syndrome
• adequate support services to help people with Down syndrome and to manage grief (this issue is considered in further detail below)

In most countries, people with Down syndrome are no longer sent to institutions, where crowded conditions and large numbers meant that disease was not easily controlled. Further, in many countries, parents want their son or daughter with Down syndrome to be at home. In most countries, education has been provided at least on the basis of a special class or, more recently, with full inclusion within a regular educational cycle. Inclusive education is offered for kindergarten/infant and elementary/junior education in most western countries, and is a process being encouraged at high/secondary school level, but in this last level, there are many challenges.[23] In some countries, such as Italy, inclusion is typical throughout the educational cycle. Thus, better understanding of health needs and allied health services, parental advocacy, early and inclusive childhood education have all played an important role in increasing health, development and well-being. Improved elementary education for people with Down syndrome has also helped to create today’s much more positive scenario. Along with these developments there has been, in many countries, a change in attitudes to people with disabilities in general and Down syndrome in particular. In comparison to the body of research of children with Down syndrome, studies of adulthood are sparse and many practical challenges remain.

Adults frequently do not gain any employment, let alone full-time employment, but this is changing, along with it greater opportunities for adult friendship, in turn increasing the chances of community interaction, partnership and marriage. As we shall see, not only do such developments require new opportunities to learn, but also, health must continue to be stable. If the years of middle to late adulthood are to be characterised by good quality of life and effective behaviour, it is essential that leisure and recreation opportunities for these age groups are available and accessible. The work of Firth and Rapley on friendship[24] and Jobling on recreation[25] is highly relevant with regard to these issues.

Further education beyond secondary level is also now even more important. We need to ask, what form should this take and how should it best be provided? Generally, the interests of teenagers and young adults with Down syndrome appear very similar to their peers without disabilities.[26] Finally, it becomes critical to recognise that retirement from activities will occur in later adulthood. What form should this take and what are the implications for community living and family care and concern? [see 22]

The changes referred to above, and the questions that arise, are critical. There is some evidence to suggest that the performance even in terms of cognitive development has improved over the years. Borthwick, in an interesting paper, suggests that subordinated groups, of which adults with Down syndrome are one, may perform at a lower level than the rest of the population due in part to physical and social deficiencies related to environment.[27] In 1866, Down referred to “Mongolian idiots”[28] and, as Borthwick states, up to the early 1900s they were viewed as profoundly mentally retarded. She also notes that the majority of people with Down syndrome were classified as being moderate to severely retarded with only a very small minority (2-3%) classified as mildly retarded. By the 1970s, 30-50% of older children and adults were thought to be in the mild range and a small number in the average or normal range of intelligence. Now it is not uncommon to find individuals in the low average or average range or even higher, given the performance of a few at university level. One can see that as attitudes and, in turn, services change across time, so educational gains increase. Borthwick argues that discrimination against people with Down syndrome has a parallel with racism, and that some of the same factors are at work, and these in turn affect performance levels. This fits with some of the work undertaken by the author and colleagues, suggesting that cognitive abilities may well rise when issues of self-image, social inclusion, societal acceptance and personal choice are positively taken into account.[16] It also seems likely that early medical intervention, including treatment of hearing problems and heart defects, will help individuals to lead more normal lifestyles, as they and their families become less preoccupied with health-related issues. Although, there is still a wide range of abilities amongst adolescents and adults with Down syndrome it is important to utilize environmental variables to enhance and stabilize performance during the adult years.

Such developments do create new challenges. As noted, although some people with Down syndrome gain employment, many do not.[29-31] Although a few become partnered or married, others do not have such opportunities.[32] Many do participate in generic and adult leisure and community resources, but a large number are restricted in such areas. Some are reaching the age of retirement, but find new challenges and barriers.[22] Parents who have supported their child with Down syndrome at home now face their own older age and decline, with limited facilities for their middle-aged son or daughter.[see 33 for example] There are also major impacts on siblings during this period.[34] It is apparent that many countries have not yet reached a stage where adults with Down syndrome have adequate services directed to their needs. Indeed, only now are many of these needs beginning to be understood, and the extent of the challenge in terms of numbers recognised.[35] The rise of a new generation of children with Down syndrome who reach adulthood is challenging health, education and community services. Independent living, employment and other features of an ordinary life are the challenges that need to be met. To cope with such challenges effectively means making changes to the way we think about support, care, services and independent living. All of these aspects explain why there is a growing interest in the needs of adults with Down syndrome.

The consequences of an extended lifespan are considerable, and the implications are as great for those who teach or provide services to young people with Down syndrome as they are for those who support or care for adults with Down syndrome in the home. We cannot blame the teacher who many years ago thought it was not worth educating people with Down syndrome, as most of them would not survive into the teenage years. However, as indicated above, nowadays most people with Down syndrome live extended lives, making the need for effective education during childhood and early adult years imperative if individuals are to live effectively in an adult community. They not only need to know how to get around in society and carry out a range of activities at home, in the community and in employment, they need to be effective in home making and building friendships and partnerships with others and, in some instances, marriage. These opportunities or successes will not happen to everyone, any more than they do in the rest of the community, but these opportunities should be available and for some, are likely options. The extent to which such developments are not available means that young people with Down syndrome remain dependent and to some extent a challenge for family resources, a cause of concern for neighbours, friends and relatives, and a cost on government services. They will be dependent for their support. Relieving this possibility is a challenge, but it is slowly beginning to be resolved.

The challenge of increased longevity is to encourage greater development and access to the various opportunities in society, so that adults with Down syndrome can be absorbed as normal citizens, doing the same things as their neighbours and their brothers and sisters. Although some of the activities are likely to vary because of culture, religion and personal and incidental experiences, there are many reasons to believe that, for many, these challenges can be met to some considerable degree with the support of parents and effective and caring personnel. Changing values and views within society is still crucial; if the larger society does not adapt, problems may still arise.

Grief: A special issue relating to increased longevity of people with Down syndrome

The ways in which adults with Down syndrome are supported when they have lost a loved one, particularly a parent or a primary carer, is a pressing issue now that life expectancy for adults with Down syndrome is so much improved. Sometimes people with Down syndrome are shielded from grief, yet often such protection only serves to hide and suppress their feelings. In a group meeting for young adults with Down syndrome, run by the author (where the adults’ parents participated merely as ‘silent onlookers’), individuals spontaneously expressed their feelings of grief and loss of a parent. The content of the meetings was guided by the contributions of the young adults themselves, and therefore the topic of grief and loss had not been planned. Some of the young adults, who had lost a parent within the last 12 months, expressed great sadness and wept. Some of the parents were puzzled as to why I allowed the young adults to explore their feelings in this way. These parents suggested that they felt that “emotion was bad for them”. In fact, the young adults were able to deal with their grief once it was expressed. Other parents, who were the spouses whose husbands had died, told me that they wished they could have experienced such a supportive encounter when their loved one had died. Adults with Down syndrome need opportunities to celebrate life experiences and express grief; they need to be allowed the opportunity to experience the two aspects at the same time. This forms part of natural emotional feeling and, handled appropriately, is a path to greater maturity.

 The box describes the grieving process experienced by a young man with Down syndrome following the death of his mother. Adults experience many events throughout their lives that lead to transition and change and it will be apparent from what has already been said, that these experiences accumulate and mould an individual’s self-image.

Adults with Down syndrome and the community

This section describes various concepts and approaches that have been used to facilitate the integration and inclusion of adults with intellectual disabilities, including Down syndrome, into their communities with regard to their family, working and social lives.

The social environment

It is well known that the environment has a major impact on individual development. The provision of enriching environments appears to accelerate cognitive development.[36] Such development is not just restricted to the younger years of the child, but appear to also occur during late adolescence and young adulthood in a number of cases. There is strong evidence for changes in intelligence over the young adult years with removal from adverse environments.[37] The same seems to be true of social and later educational development. It is the environment that can enhance or limit development. It seems it is never too late to intervene. Of course, it is better to do so right from birth, since lack of appropriate stimulation results in cumulative losses. Although such limitations can be, to some degree, minimised later in life, the task becomes more difficult, for there is also much learning and adaptation to be done in adult life.

Cognitive development and increased intelligence can occur in adult life, particularly for those who are removed from very adverse early environments. However, in a longitudinal study of verbal intelligence in adults with Down syndrome, Brown noted some modest gains, regardless of background, and he speculated that much of this might have been associated with opportunity to develop social skills and positive self-image.[38] Interestingly, in the intervention part of this study, it was females who tended to outperform males. One possible explanation is that, during this study, they were permitted to take more risks than normally is the case, and so developed their skills and self-image further.

As indicated, there are probably several reasons why, in western countries, young adults with Down syndrome generally do better than they have done in the past. Medical intervention and better health care have already been noted as obvious reasons. However, a high level of attention in a positive family environment, and effective social and educational stimulation are also critical. Although other aspects will be taken up later, it is apparent that access to normal community environments is, as a general rule, necessary for effective development.

In the past, many people with Down syndrome were sheltered from normal environments and life in the community through institutionalisation. This resulted in the loss of the normal stimulation that is required for maximum development. Although total sheltering of people is nowadays less typical for young people with Down syndrome in many countries, the same cannot be said for adults who may attend sheltered workshops, or spend a large amount of their adult time in only the family’s own home. Indeed some recent books, suggest that sheltered workshops or special centres represent what is to be expected and desirable,[see for example 37] but an increasing number of individuals experience rather more normal living situations and demonstrate the benefits of this. The evidence presented earlier suggests even more of the population are capable of an increasingly independent lifestyle. This is very important because as people with Down syndrome come to live longer, the costs of care and protection can be very high. We are faced with either caring and protecting individuals to an unusual degree or helping them to learn, so that they can progress towards independence and become as independent as possible. Full independence will not occur for everyone but progress along this road can assist the individual and his or her family. It can also reduce the involvement of support services whose roles will change, particularly if more adults begin to contribute financially and socially to their own well-being.

Self-image

There is considerable and growing evidence that positive self-image enables individuals to be more outgoing, seeking experience and opportunity. Self-image is derived initially and primarily from parents but is also affected by siblings, grandparents, other relatives[see for example 39] and the activities and state  ments of professionals. Very often self-image is developed through a myriad of minor experiences, which allow an individual to build up a knowledge and perception of self. Much of this may be unconscious and result in the behaviours we see. It is critical that the people and the environment provide positive experiences, and provide the resources to learn how to deal with challenges. One mother said that her child was teased at school, but felt that this experience had helped her child learn how to deal with the rough and tumble of everyday life.[40] Thus negative experiences, transformed through support, and positive attitudes at home may then be used to advantage. It is recognised that not all experiences are positive. Nor can positive outcomes be assured. Rather, the aim is to ensure as far as possible a positive, supportive and stimulating home life that can provide many of the resources from which individuals learn how to deal with everyday adversities, and a base to which they can return when failure or negative experiences occur.

 Protection can limit experience and therefore limit development, and this is as true of self-image and self-esteem as of other aspects of learning. An individual’s level of self-esteem can influence, for example, whether he or she feels able to ask people for information, can resist inappropriate suggestions, can seek experience and deal with temporary anxiety, and rely on themselves for knowledge and information. It also influences the extent to which individuals can question and challenge authority. Parents and professionals need to recognise how the experiences of questioning, challenging and exploring help individuals to develop and become truly adult. The individual does not always need to be in the care, or under the instruction, of someone else. Once again, this is a lifespan issue, although it is never too late to learn.

So far, it has been suggested that self-image develops gradually and depends on key persons in the individual’s environment. Key events can have a positive or negative effect on an individual’s self-esteem, depending on the events themselves and most importantly the person’s perception of the events. They may help to build a positive self-image and increase self-esteem or lead to negative changes, resulting in decreased self-esteem. Early information given to parents that their child “will not learn” because he or she has Down syndrome, or that the person should be fostered as this would be “better for everyone”, will have a huge impact on a parent’s self-image, self-esteem, perception of the child and future behaviour towards others including, most importantly, their child. Views such as these still exist in some communities. A destructive teacher, thoughtless actions of someone, or, more seriously, sudden and traumatic abuse, psychological, physical or sexual, can be major precipitators of poor learning, restricted growth or emotionally inappropriate behaviour. These are all environmental issues, which help to determine what sort of life the individual will have, and will influence the development of self-image. However, it is the general ambiance, and the attitudes and opportunities on a daily basis, which will assist the individual the most.

Normalisation and social role valorisation

The concept of normalisation has been developed over the past 50 years. The original idea was conceived in Scandinavia and developed in Canada and other western countries. This term is frequently misunderstood to such a degree that Wolfensberger changed the name from normalisation to social role valorisation.[41] Normalisation does not mean becoming normal; it refers to the opportunity to experience normal or general community lifestyles. The sensitive application of this approach should ensure that people are treated more fairly and reasonably and have learning opportunities that are more typical. They should have access to the same experiences as other members of their community and non-disabled peers. For example, it is not normal to live in an institution. In most countries, it is not normal to only be with people who are disabled or who have Down syndrome. It is normal for adults to find a partner or to marry, but this does not often happen to people with Down syndrome, possibly because societies do not believe this is possible or desirable. In institutions people get up early and at the same time, people often wear the same clothes, may have limited access to materials, goods and money, or, as adults, access to work which has normal pay. Indeed, there is evidence that even when living at home, people with disabilities, including those with Down syndrome, go to bed earlier and get up later than people without disabilities who are of the same chronological age.[42] Even their methods of transportation to school tend to be more protected even as teenagers and young adults (e.g. by taxi or car rather than bus or bike) and if they attend a regular school they are more likely to eat their lunch or have their breaks on their own. At home, they are also less likely to have a say in how their room should be decorated or have a key to their front door. Sometimes, access to these opportunities may be inappropriate, but they clearly indicate social ways in which people with Down syndrome may have less control over their developing lives than other people do. Where practicable, this situation must be rectified.

The application of normalisation has made an immense difference to people with disabilities and this includes individuals with Down syndrome. If applied properly it means that they receive regular schooling during their late teens, and tertiary education where appropriate, rather than experiencing institutional or highly protective, low stimulation environments. It means they should experience situations, in the context of education, work, leisure and home life, in the social environments in which the general population live. However, this is only part of the story; a number of related ideas have been developed, some of which have been influenced by the concepts of normalisation or social role valorisation.

Inclusion

Inclusion, particularly in relation to children’s education, is familiar to a large number of people.[43] Like social role valorisation, it has been picked up with considerable fervour and is applied rigorously in a number of places in the world. Indeed, it could be described as a social movement. This is very important, but it is only part of the picture. Although educational inclusion seems critical for social contact and educational development, it also needs to be supported because it helps to integrate individuals into one familiar society. Indeed, if inclusion is to work it requires a lifespan conceptualisation, and this has yet to be fully developed.[44] Familiarity is a key component to development and inclusion and it has many aspects. An individual can become familiar with an institution, their home or community. However, if an individual lives in an institution or goes to any ‘special’ (or segregated) environment then it may become very difficult for that person to learn how to adapt and function in non-segregated environments. The individual has to become familiar with the wider community if he or she is to learn effectively. Indeed, there is some evidence that language and motor-perceptual behaviours reduce for all of us when we move from familiar to unfamiliar environment, and this is much more marked in people who experience disability.[45] Such negative effects become less noticeable if we learn how to deal with change. Overprotection can inhibit the growth of familiarity with the wider environment, and restrict learning and adaptation to novel situations. Adults generally face many new situations. Indeed transition from school to work is a clear example of this type of situation. Yet those with Down syndrome are often expected to go into open employment after living in a restricted home environment or in a special school environment.[46] It is then not surprising that they face more difficulties than most when employment placement is considered. This is probably why some people believe that sheltered workshops for adults are important. Furthermore, people without disabilities who do not study alongside people with disabilities are not encouraged or enabled to understand or support, or even know about people with disabilities.

The type of isolation described is, to varying degrees, very much the case for adults with Down syndrome. If they are not seen they are out of mind, and out of mind often leads to poor services, treatment, and intervention, little understanding, impoverished lives, and reduced access to socio-political systems. Some of these issues are also associated with funding. There are, therefore, very good reasons why parents of children with Down syndrome have argued for educational inclusion, not just by being in a mainstream school, but being part of a mainstream class in a mainstream school and being instructed by the same teacher, even if this involves support from a learning support assistant. In this book, it is argued that inclusion (within the community, employment and tertiary education sectors) is imperative for adults with Down syndrome.

There are many communities where such inclusion does not occur. Even in inclusive communities, there may be individual parents who do not wish their child to be included. The reasons for this are diverse. They include lack of awareness of the positive effects of inclusion, a feeling that their child would not get appropriate support in a mainstream class for older teenagers, or a positive belief and experience that the quality of teaching in the special school is more suited for their child. There may also be parents of children without disabilities who have other underlying beliefs and values that may act as a barrier to inclusion, e.g. the belief that having children with Down syndrome in a mainstream class will take away time from children without disabilities, the belief that children with Down syndrome cannot learn or will not live for a long time, or, in the extreme, there may be some who fail to see children with Down syndrome as ‘real children’. In summary, there are a number of issues that can account for exclusion or inclusion in such situations.[see 47]

As adolescents with Down syndrome make the transition into adulthood, parents face a new challenge for inclusion. Many parents will have been satisfied with inclusive educational placements and may feel that the sense of inclusion is lost as their children’s typically developing peers leave school for employment or tertiary education. Many people, including parents and professionals, are challenged in terms of how to ensure inclusion practised during childhood education can be transferred to adult life and how new and important inclusive practices can be applied at the adult level. Employment environments including rehabilitation, training and tertiary educational centres need to be adjusted to inclusive models. This will require further training of support and care personnel. Social planning and, in broader terms, forward planning, including the ability to anticipate and problem-solve, represents a set of skills which are critical in adult life for adults with Down syndrome. The opportunity for partnership and marriage is another area where inclusive attitudes are certainly far from universal. Some parents think that these sorts of relationships are undesirable – others believe that they may be neither likely nor possible. The author has met parents of children with Down syndrome who do not contemplate such relationships for their children as adults, nor do they anticipate them to have similar experiences to other typically developing adults. However, other parents have positive, inclusive attitudes and believe that their children with Down syndrome will develop and grow into adults with Down syndrome who lead effective adult lives, involving loving relationships. Sadly, at present, such inclusive views are not held by the wider society and these issues arise in most countries, albeit to variable degrees.

Features of exclusion and inclusion

Exclusion of individuals and groups frequently occurs. Many individuals are not readily accepted into societies around the world. A recent series of monographs from the Laidlaw Foundation is useful in this context.[for example 44] As our societies have developed and become industrialised, and as complex technology has arrived, so newer types of exclusion have occurred. These include the use of various interactive processes, from the touch-tone telephone with its possibility for punching in a wide range of alphabetical and numerical information, to computers and the internet. Credit cards, cash machines and arrangements for international travel all provide new opportunities for inclusion, but these developments require learning and experience. In many instances, they can be major assets to the adult with Down syndrome, provided equipment and opportunities to learn are available. Without these opportunities, the developments become additional exclusive practices, which further handicap adults with Down syndrome and increase the individual’s dependence on others.

This section examines the features that characterise exclusion and how these can be identified. Although not occurring in all communities, the following points are based on current or recent examples. It is important to ask whether a practice isolates people from the regular or local society or community. The box provides examples of exclusion grouped into four categories.

Clearly, some exclusions result in physical, social and psychological effects. Not being allowed, or in a position, to give to others, or not being recognised along with others within a grieving process are major emotional deprivations and can have profound effects on self-image.[3] Some exclusions are obvious, others subtle and insidious and often relate to individual perceptions or misperceptions.

Quite frequently, these different aspects of exclusion occur at the same time. Exclusion closes the doors to experience and opportunity. Under these circumstances, we can frequently predict the outcomes; control leads to accurate prediction and where professionals can say with some degree of certainty what will happen. For example, if an individual is controlled through being placed in an institution, the opportunities for diverse development are denied. The possible outcomes are limited, and therefore more predictable. If an individual is able to live in the community, the number of variables and therefore possibilities increase, resulting in a wider range of possible outcomes. Of course, in the exclusive scenario, the individual may be expected to be safe and cared for (although this is not always the case). In the outside community, where there is likely to be greater inclusion, more unanticipated risks are likely to occur and this means the individual will require training, experience and support.

Other features accompany exclusion. One of the most important of these is hierarchy. Exclusive groups tend to be hierarchical. Hierarchical management systems have a pyramidal effect, with the person with Down syndrome being at the bottom of the pyramid and therefore, the least empowered. These people are least likely to be consulted about changes and decisions and they are most likely to have to do what others say and get into trouble if they do not follow the rules. Hierarchical societies tend to be rule-driven and often are highly bureaucratic. Such systems may have their uses under certain conditions, but they are not likely to improve the lives of people with Down syndrome. These systems have often been promoted on the grounds that they provide care. However, when people have long lives and parents die before the person with Down syndrome, care can be insufficient. Learning, development and independence have to be promoted. These outcomes are more likely in inclusive societies.

Inclusion at its best provides open opportunity. It recognises the need for care but promotes access, and as such is the opposite of exclusion in terms of its characteristics. Inclusion, like exclusion, may be physical, social, intellectual and /or psychological. Once again, it is easier to recognise its physical components than the behavioural, social and psychological counterparts. It is also more difficult to recognise and understand than exclusion. Some ancient cities have city walls, while in modern cities, the boundaries are frequently unclear to the observer. Exclusion and inclusion have similar parallels.

Physical inclusion

Physical access is one aspect of inclusion. For example, access to community buildings is critical – can a person with Down syndrome get into them and access their facilities even if they have limited mobility or use a wheelchair? People with Down syndrome tend to be short in stature and therefore counters may not be sufficiently low for them to interact with a shopkeeper or clerk. If critical community services are based on an upper floor without an elevator, people with mobility, respiratory or heart problems may find it very difficult to access the services they require.

The interesting thing about physical inclusion is that if you extend access for one group, you tend to enable other groups including people who are elderly, people with physical disabilities and parents and carers with children in pushchairs. In such instances, physical inclusion is an advantage to the general society. Physical access may not be necessary everywhere, but it is crucial for places of common community usage.

Social inclusion

Social settings such as clubs, businesses and community centres need to be organised so that people with Down syndrome are not unduly excluded by social attitudes. That is, individuals in positions of authority need to treat people with Down syndrome with respect, enabling them to understand and participate wherever possible. For example, if they are to have a bank account not only do they need to learn how to use it but also, because much of their learning will be social, they will need assistance from bank personnel. One requirement of inclusion is that people include adults with Down syndrome in natural, adult conversations and take the trouble to make sure that the individual can follow their meaning and contribute to the conversation. When the adult with Down syndrome is recognised as an individual, shown respect, spoken to using readily understandable language, and included in conversation, they are included psychologically and socially.

A specific example of adult inclusion or exclusion

This can be taken one step further. Sometimes individuals with Down syndrome are included on the boards of agencies, which serve people with disabilities. In some countries like Australia and Canada, this is very much encouraged at government level. However, members of such boards sometimes react in different ways to the member(s) with Down syndrome.[see 50] Some regard the individual as incompetent or believe they should not be there on principle. Some believe they know enough about Down syndrome though they have never worked in a face-to-face situation with people who have Down syndrome. Others believe someone else should vote for a person with Down syndrome despite the fact that they may have clear views on how a matter should proceed. Some argue that the individual has little financial understanding of the agency’s budget, and although this may be true, this frequently applies to other board members without disabilities. The inclusion of people with Down syndrome requires additional time so that everyone understands what is going on, but this often turns out to benefit everyone and, quite simply, matters arise which other board members may never have thought about, e.g. the adults with Down syndrome find the particular name of the agency degrading.

 Other board members (sometimes on the same board) regard the inclusion of a person with Down syndrome as critical to the agency’s performance. For example, some members will come to understand what Down syndrome is about and comprehend the environmental issues facing people with disabilities through the inclusion of a person with Down syndrome on the board. In some instances, the person with Down syndrome has a major and key role in helping the other board members understand what is going on in the agency. This is an important example of inclusion and demonstrates the important possibilities of including a person (or better still two or three persons) with Down syndrome onto agency boards and/or advisory committees. The learning and the contributions are from both sides, consumers as well as other board members. People with Down syndrome learn how to negotiate and are helped to develop a contributory (giving) role which enhances self-image. Training for all board members becomes essential.

Some boards, as an intermediate step, set up a committee of people with Down syndrome to advise the board on matters concerning their central interests e.g. activities, challenges in the workshop or community residence. This is helpful and should be set up, but it is no substitute for representation on the agency or society board for that represents a two-way learning experience.

Physical and sexual abuse as an example of exclusion

People with Down syndrome may be singled out for abuse. We know that such abuse is more common than amongst people without disabilities. Although abuse may be physical, and specifically can involve sexual abuse, it has major psychological and social effects. Although abuse can occur to anyone, it most often happens to people who are vulnerable because of lack of social experience, lack of knowledge and poor self-image.[see 52-53] Such experiences often occasion guilt and inhibit the individual even further. In brief, exclusive practices can lead to abuse and abuse can further increase exclusion.

Often the experience of abuse, hidden because of shame or fear, can cause emotionally disturbed behaviour resulting in the individual being perceived as less competent and therefore more likely to be excluded further within society. Service personnel or family members often see the possibilities of abuse as reasons for a high level of care and protection. However, it is people who are well known to the adult rather than strangers who more frequently commit abuse.[see 51-52] It is therefore important to protect the individual by ensuring, as far as possible, that they are physically and sexually aware of potentially threatening situations and the best way to do this is through knowledge and enhanced self-image.

The handicapping environment

Inclusion has some important consequences for parental and professional behaviour in particular and, although these will be addressed both in this book and elsewhere in the series, it is important that parents and professionals reconsider how they can make a person’s environment more inclusive. This involves recognising that much of disability is in fact handicap, or restriction to participation, as defined by the World Health Organisation.[54] Handicaps are frequently attributes which are not intrinsically part of a condition but frequently arise because of the condition. They may also be caused by restrictions that arise because of the nature of the community in which a person lives. If we assume that someone who has Down syndrome cannot hold down a job, we are adding a handicap, for the consequence may not logically follow. It may be that people in society think that all people with Down syndrome cannot, or should not, partner or marry. This is a social attitude which has far-reaching consequences for the individual and for society. It is critical that education, health and social care practitioners and family members recognise this, and also recognise the variability, skills and potential amongst people with Down syndrome. Some professionals may be reluctant to work with people who have Down syndrome because they think they are not able and cannot benefit from treatment, intervention and education. For example, speech is sometimes confused with language, and where speech is unclear, it may be assumed the individual has poor language and cognitive ability. Typically, language comprehension skills are much better than expressive speech skills. Where speech can be improved and therefore expressive language understood, a number of gains can often be made. Unfortunately, confusion between speech and language by parents or professionals can lead to negative consequences and the loss or, even removal, of therapeutic assistance. It is worth noting that such examples underscore the report from the World Health Organisation whose definitions now stress activity and participation rather than handicap.[53] This conceptual change in thinking is critical in the field of Down syndrome.

It is important to include people with Down syndrome socially and psychologically. To ignore them is a form of exclusion. This may be caused by embarrassment or dislike of something or somebody unusual. Some people may feel that such behaviour, or even the individual, does not fit in society and this attitude generates further exclusion. If an individual is not welcome in a conversation, for example, how can they become included?

This series of books is underpinned by the belief that the behaviour, development and ability of adults with Down syndrome to fulfil their potential is largely shaped by their social environment. The implication of this is that parents, siblings, support workers, therapists and others can and should work together with adults with Down syndrome to provide an enriched and inclusive environment that will foster self-esteem and quality of life. We have not yet made a social environment that fully facilitates the development of adults with Down syndrome. Psychologically we can intervene. We have a variety of programmes for dealing with negative or inappropriate behaviours. We are beginning to understand that people with Down syndrome can be susceptible to the same mental illnesses as everyone else. We have developed training programmes to deal with learning, and educationally we are devising specialised techniques to help with numeracy, reading and so on. However, these are often child-oriented and can create inappropriate attitudes towards adults with Down syndrome. This is a form of exclusion in itself; exclusion from adult life. This series is about adults. Here we have much further to travel, for we need adults with Down syndrome to be treated as adults.

Rights and freedoms

Rights and freedoms are key themes related to inclusion and quality of life. Well-being is restricted if individuals do not have freedom, rights and responsibilities within society. This applies clearly to adults with Down syndrome. As with the general population, people can exercise rights if they have basic abilities and opportunities. The act of exercising one’s rights encourages further development. Adjustments by society to reduce discrimination by making community facilities accessible are very important. Many of the issues in this context are legal, and although there are differences in legal procedures in various countries, there are often common principles and familiar needs. A useful overview has been provided by Ashton.[54] It is also helpful to consider Herr and Weber[55] on ageing, rights and quality of life. Rights are reciprocal and they have to be honoured by all parties involved. A number of basic rights and freedoms are seen in most countries as crucial for effective social functioning by all members of society. In some countries like Canada, such rights are enshrined in the constitution.[56] However, even in the most developed countries not all rights are extended to people with Down syndrome. The following sections describes five areas in which the basic human rights of adults with Down syndrome have been denied; rights to due process and defence, immigration, sexual expression, sterilisation, marriage and partnership.

Right to ‘due process’ and ‘appropriate defence’ (or fair treatment in legal proceedings)

Over recent years, in the USA and other countries, a number of people who have intellectual disabilities, including people with Down syndrome, have been charged with crimes and convicted on questionable evidence in circumstances where their rights have been infringed and the person’s own evidence has been obtained under intense psychological pressure.

 It is important to recognise that individuals who are unfamiliar with social situations or have poor self-image and restricted language can easily be persuaded to reply as the interrogator wishes. Unfamiliar court proceedings may be intimidating, although many courts are becoming sensitive to this and allowing for familiarization of court and court procedures before moving to trial. The same issues arise when the person with Down syndrome is the aggrieved party.

Immigration

In Australia, Canada and the United Kingdom, to name but a few, people with Down syndrome have not been allowed, as a rule, to immigrate and therefore cannot take up permanent residence or become citizens. There are a number of families where a parent is offered employment but not permitted to immigrate and bring their offspring with Down syndrome with them. There are some signs that the attitudes of immigration authorities are changing. In Australia, for example, temporary residence has been permitted on occasion and permanent residence occasionally granted. However, these tend to be exceptions. The evidence considered is medical and psychological, as well as social and educational. There is often little recognition of up to date understanding of health and behavioural or educational concepts in relation to Down syndrome, and it is frequently assumed that such individuals will cause great cost to the country concerned. In several cases, known to the author, medical intervention which was required in the individual’s early years, long before the family wished to emigrate was successful and the individuals have remained in excellent health since then. Knowledgeable professionals, including paediatricians, put forward evidence supporting the positive health record for the individuals concerned, but health risks are still cited by government and immigration officials as reasons for refusing immigration status, despite the evidence to the contrary. Some individual children and teenagers have shown reasonable educational performance in relation to their age, some have been above average or average in attainment, and there is no apparent reason why later employment should not take place. Intelligence testing is generally used to ascertain ability levels, and is used to predict future performance and employability. However, it is known that such measures do not predict future employment success, nor is it a valid predictor in these cases of performance in social or allied areas.[57] O’Connor and Tizard said in the 1950s, if you want to know whether someone can be an effective bricklayer do not give an intelligence test; give an opportunity to carry out bricklaying![58] There need to be major changes in values and attitudes as well as understanding in the context of the application of recent knowledge and experience. Of course, much of the above begs the issue of rights and freedom, which needs still to be examined. The argument here is that the rejection of individuals is based on an erroneous and out of date understanding of Down syndrome. Indeed many families suffer from such decision-making, yet the potential amount of movement between countries of families with a member with Down syndrome is small but probably fairly even amongst many countries. Thus, the additional health and social costs incurred as a consequence of allowing people with Down syndrome to immigrate to individual countries, would be minuscule. The issue seems clearly one of denied rights and restricted freedom.

Sexual expression

Sexual freedom is a challenging area for debate. Very often restrictive practices, plus overprotection, limit sexual development and learning. This vital area of development is often dealt with inadequately by parents and professionals who will be influenced by societal values, attitudes and prejudices, and by their own experiences of sexual development.

Today we recognise that if people with Down syndrome are to function as adults they need to recognise their growing sexual urges and needs for expression. They also have to learn, like everyone else, what is acceptable within a society and what is not. Yet they should not be denied rights that others have. Sexual needs vary and they should be seen within the context of maturation, and growing social and physical recognition and understanding. Many adults with Down syndrome want personal and/or sexual relationships like other people, and their needs are likely to be as varied as other people.

Sterilisation

 In many countries, some parents and authorities are so worried about psychosexual matters, possibilities of pregnancy and related issues, such as inappropriate emotional and social behaviour, that people with Down syndrome have been sterilised by surgical intervention. In parts of Canada, this was possible until 1972 under some provincial legislation. In many countries sterilisation has often been carried out without appropriate consent. In the author’s view, sterilisation without the patient’s informed consent is a major intrusion on a person’s body and frequently causes damage to psychological growth.[see 59] In Australia a considerable number of sterilisations have been carried out over recent years, and this practice is believed to continue to the present day.[60] Yet, there are general guidelines or rules, which should assist us in these instances. Firstly, as the Down Syndrome Association (DSA), UK, state in their policy statement on the topic, each individual case must be viewed objectively and independently.[61] Before considering sterilisation, all forms of contraception [see 52] and appropriate sex and relationships education should be investigated. The author is aware of adults with Down syndrome who are able to competently and responsibly manage reversible forms of contraception such as the daily contraceptive pill. It is essential, however, to note that where any form of contraception, including sterilisation, is being discussed, the ability of the adult with Down syndrome to give ‘informed consent’ is crucial. Where informed consent cannot be given by the patient, the specific legislation on this matter must be consulted. Individuals, couples, parents, guardians and professionals may require careful medical and legal advice to assist the decision making process. It may also be useful to involve a skilled, independent advocate, to represent the feelings and views of the adult with Down syndrome.

The Down Syndrome Association in the UK also notes that “there is often a misconception that sterilisation solves related problems; however, it won’t prevent potential abuse or feelings of sexual desire”.[61] This suggests that sterilisation will not prevent people with Down syndrome from experiencing sexual desire or participating in sexual activity and therefore it should only be considered as part of a wider package of care and education. We should teach social sensitivity, respect for oneself and others, and illustrate the implications of relationships. Indeed sexuality needs to be discussed in the context of social relationships at levels at which the individual can comprehend – and most can comprehend and apply more than we realise.^[62]

Marriage and partnership

Marriage and partnership are also related to growth, rights and freedoms. Increasingly people with Down syndrome are partnering and marrying. So far there is not a large amount of evidence on the topic, but several authors have interviewed people with Down syndrome who have married or partnered and the results are encouraging.[63-64] There are many positive reasons for marriage and partnership. For example, two people working together can capitalise on one another’s skills, and friendship on a long-term basis often increases motivation, learning, leisure and recreation. All of these activities tend to increase health and longevity and they are natural life activities, which motivate individuals much more effectively than artificial ones in formal training environments.

Some of the important advantages of adult partnerships can include the pleasures of sexual and personal intimacy, the sharing of responsibilities and activities, enhanced self-image and the ‘feeling like everyone else’, the combination of financial resources, the opportunity to rent or own a property.

 The following comments were made by people with Down syndrome who are married.[for further detail see 63, 52 and 64] Natural activities that motivate individuals are much more effective than artificial activities.

•  “I have someone to love and look after.”
•  “She does the cooking and I go to work.”
•  “I am able to give; I have something and someone to look after.”
•  “I have a wedding ring. I want to show you my wedding photos.”
•  “I do the cleaning and we go shopping together.”

Of course, those who marry may sometimes need support but often it is minimal. Such relationships are likely to increase longevity, but they tend also to help the individuals become self-supporting and more responsible for themselves as well as others. Such partnerships can reduce stress to the family as a whole, add to the quality of life of individuals concerned, and offer a cost effective arrangement for community housing and community living. Of course, not all marriages or partnerships work out. One young woman with Down syndrome, now divorced, who experienced physical abuse in her marriage, stated that she would not marry again, but had learned much from the experience.

Some people express concerns about the possibility of people with Down syndrome raising a family of their own. There is extremely limited evidence in this area, and the little evidence that does exists tends to be circumstantial. Van Dyke indicates that fertility is significantly impaired in both males and females with Down syndrome.[52] However, he goes onto say that there is one documented case of a man, who was alleged to have Trisomy 21, who fathered a typically developing child.[32] There are more records of women with Down syndrome producing children. The reasons for such few pregnancies may not only be biological infertility, but social opportunity. However, the data that exists suggests that mothers with Down syndrome are significantly more likely to produce a child with Down syndrome than mothers without the condition.[65] However, these figures may be distorted by various confounding variables and there is a need for further good quality fully-documented research in this area. Van Dyke also notes that the medical risks for mothers with Down syndrome may be higher than those for mothers without Down syndrome, due to the possibility of existing health problems, e.g., cardiac malformation, thyroid dysfunction.[52]

In the author’s experience, few adults with Down syndrome have expressed a desire to have a child; however, as society changes so this view may change. A common response is “I don’t want to have a child because they may have Down syndrome like me”. However, other adults with Down syndrome have expressed concerns about having a child who is different from them.[32] Generally speaking, many adults with Down syndrome display more understanding of the issues surrounding sex and parenting than may be expected.

Contraception is now very effective and should be discussed with, and employed by, sexually active or potentially active persons with Down syndrome. To date people with Down syndrome have tended to marry others with disabilities. This is to be expected as emotionally intimate relationships often develop between people who share similar experiences, likes and dislikes and so on. This suggests that adults with Down syndrome are likely to form their closest relationships with other people with disabilities, because they are their peers. They may have met them while participating in segregated work or social and leisure activities. As inclusive educational and social opportunities increase, this may change. In the foreseeable future, it is likely that more people with Down syndrome will marry or take a partner and increased longevity, increased social skills and greater societal inclusion will help to make this more common. One of the greatest barriers to marriages is the barrier caused by society’s attitudes, including parental concerns. Many parents find it difficult to watch their sons and daughters ‘fly the nest’, recollecting and recognising the challenges that young adults face as they make the transition into this new stage of their lives. This process can be even more difficult for parents of young adults with disabilities. If children with Down syndrome are to grow into fulfilled adults with Down syndrome, parents must allow their sons or daughters the chance to participate truly in the ways of the adult world, and this should include building personal and/or sexual relationships with a partner of his or her choosing. We should now come to expect that adults with Down syndrome may marry or partner and this is their right. Such relationships may not always be successful, but this is no different from the rest of society. It is, and will be, necessary to provide sensitive support services. Having said this, it should be recognised that adults with Down syndrome show wide variability. Not all of them will be able to marry or partner, not all will wish to. It depends on development and functioning level, and it also depends on what parents and society will permit individuals to do. The same applies to same sex relationships; males and, separately, females may share accommodation, home and community living. Friendships and homosexual partnerships may arise. Although often a concern in some societies (and this needs to be recognised) such partnerships can also be fulfilling and bring about growth, maturation and adaptation resulting in greater well-being.

Some parents and professionals may feel that an individual with Down syndrome is not ready or not capable of having an intimate sexual or personal relationship. However, we need to be aware that this may be a way of rationalizing our own anxieties and misgivings. It is essential to keep the doors open. When they are closed professionally, parentally or by the community, we may have got things under control, and we can predict what will happen, but it is only when the doors are open that variation and progress become possible and are maximised. One father, a minister of religion, commented to the author, “I thought my daughter would not be able to marry and that she had no future. After seeing some of the evidence I now believe she has a future. I don’t know whether she will get employment or marry but I will no longer close the door on these ideas”.[also see 3]

Family quality of life

So far, this book has focused on the ways in which a variety of parental, environmental and societal factors influence the development of the individual with Down syndrome; however, it is crucial to consider the influence that the person with Down syndrome has on the people in their social environment, most importantly their family. How do mums and dads, brothers and sisters, as well as the extended family of grandparents and aunts and uncles react to the presence of a person with Down syndrome as they enter adult years? [see 39 and 66] It appears that the effects are partly, if not largely, dependent on society and community attitudes. At one time, in many communities, to have a child with Down syndrome was seen as major blow to the family. Guilt and shame were quite often expressed. The parents may have rejected the child, were ashamed to be with the adult, or the person’s behaviour in the community made them feel self-conscious. To a considerable extent, these feelings are understandable and normal reactions. The more extreme reactions are still true today in some societies. Even today, there are some who feel it is a punishment from God, whilst others see it as a special blessing, through which to demonstrate higher ideals. Yet it is through the acceptance by society of such individuals that self-consciousness can be lessened, and this too comes about with greater inclusion.

Attitudes around the world have changed or are changing. Many parents of an adult with Down syndrome talk of opportunity, changes in family attitudes and changed and improved quality of life.[66, 67] It is recognised, however, that much of this depends on circumstances.

Families come in different shapes and sizes. For example, some may consist of a father and mother, brothers and sisters, while others may be made up of a single parent and a teenager or an adult with Down syndrome. In recent studies, consistent with other data, the author found that lack of understanding and support from the extended family and an absence of support from neighbours and local community can add to the perceived stress of the family. Family members, particularly the mother, need to be able to talk, confidentially, to someone with good listening and communications skills. It also appears that spiritual values and having a ‘dream’ for the family and particularly the person with Down syndrome are associated with enhanced quality of life. Some preliminary analysis of these findings was presented at The International Down Syndrome Congress in Singapore, 2004.

Family living

Adults with Down syndrome often live in the parental home much longer than other children. This is bound to have an impact on family members, particularly parents. It may mean that the person with Down syndrome lives with one elderly parent, frequently the mother. Major adjustments are often required to the living situation but, once again, the responses from parents are varied. To understand this it is useful to look at family quality of life.[33, 68-69] Some families adapt by viewing the person with Down syndrome as a permanent resident in the family home. Indeed, sometimes a parent will be distressed at the prospect of the person leaving home since adaptation has formally taken place and they, the parent, would feel lonely if they left. Indeed, there have been circumstances where a parent has requested social care agencies not to try to rehabilitate, as they have come to rely on the individual within the home for help and companionship.

In some instances, the situation is entirely different, with parents encouraging the individual to live on his or her own. In other circumstances, families with adequate funds have built on a small, but independent, suite of rooms to their house, which is totally independent with its own entrance, bathroom, kitchen and living facilities. The young son or daughter has regular contact with the family, but essentially lives a separate life as they become increasingly independent. This, when it can be done, is often effective.

On the other hand, there are families where the stresses are clearly manifest, for the young or older adult may have to contend with mental health problems as well as issues associated with Down syndrome. This may involve the adult with Down syndrome living away from home in respite accommodation, at least for some periods of time. In many countries, this lifestyle choice is reasonably available, but is often difficult to obtain in poor countries or rural areas, where long distances have to be travelled and facilities are sparse.

As we move away from institutions and other care facilities to inclusion, particularly in countries where family structure may be highly variable, it is critical that respite for parents is available. Lone parents of adults with Down syndrome who may be having major emotional challenges, will need to be supported in terms of respite needs, otherwise community rehabilitation is in danger of breaking down in such situations. [70]

Another major challenge relates to the fact that parents are themselves getting older. In the Western world, separation or early death of a spouse may mean the young adult with Down syndrome becomes more dependent on a single parent and, as that parent enters old age, questions and concerns arise around who will care for the person with Down syndrome.[22] All these issues affect family well-being and quality of life. The resources in the community and the family, many of which are discussed in the family book in this series, are influential in determining their impact. We must remember that this is the first generation where there are more adults with Down syndrome than there are children with Down syndrome. This creates a new challenge for society. Siblings themselves are older, and are moving into employment, marriage or partnership, and building their own families. Their parents often feel it is unfair to ask these children to take responsibility for their sibling with Down syndrome, although many are caring and supportive. Many older parents worry that there may be no suitable accommodation and care for their adult child with Down syndrome once they are too old to look out for them. These later life challenges need to be met by various groups in community and disability services.

Family living arrangements need, as far as possible, to meet the needs of all family members. All sorts of issues can arise. Some of these can be financial and, in many countries, tax relief is provided for families where there is an adult with disabilities living in the parental home. Even so, this generally does not cover all needs. Frequently individuals in their late teens or early adult years may still be at school or in sheltered circumstances. The patterns developed in earlier years will have become established and where parents (generally mothers) have overseen the care of their child, and may have not had opportunities to develop the life style they had hoped for, dependencies may occur in both the child and the parent. [see 66, 68]

Although families often find they need to change lifestyles when involved with people with Down syndrome, a large number report effective quality of life, according to data recently collected by the author and colleagues.[65] Some families suggest that quality of life has improved for them, as new values and accent on quality experience in leisure, home and community have taken over from the challenges of promotion at work and events away from the family. Issues seem to arise when the individual is very dependent on one parent, or when there are major emotional and mental health issues in addition to Down syndrome. One should not ignore health issues and some of these are outlined below. Many of the issues referred to above are discussed by Hayes who has looked at these issues across the lifespan.[67]

Advocacy

Advocacy is a critically important process for adults with Down syndrome and it needs to occur at many levels. Ideally, advocacy is a process which aims to represent the individual’s wishes and needs and ‘looks after’ the individual’s interests. As a process, it recognises that at times parents and professionals have biases and loyalties which conflict with the interests of the individual. At its best, advocacy is an enabling and supportive process, helping others to appreciate the individual’s perspective, and supporting parties to enable the person to attain what they need or wish to attain. It should not become a confrontational process and this is where the skill of the advocate comes in.

 This section provides examples of situations in which an advocate may be helpful in representing the views of the adults with Down syndrome. Firstly, advocacy may be required in situations where care or support workers recognise an individual’s needs but are unable to meet them due to the regulations of an organisation, or the entrenched and sometimes dated views of a senior staff member. Secondly, an advocate may be helpful in representing the views of an individual who wishes to live in the community and has the ability to do so, but is prevented by one or both parents. Quite frequently parents may not recognise that, at the age of majority (18 or 21 years of age in many communities) unless otherwise agreed in law, the individual has rights which preclude parental control. In such instances the individual may need an advocate to advise and counsel and represent them in discussion with their parents. Some people believe that advocacy is best carried out by an independent, but skilled, person and this is often necessary. But all effective professionals should advocate on behalf of their clients. All parents should have the best interests of their sons and daughters at heart. But we need to recognise that sometimes we all need help to perceive what are their best interests rather than our best interests or needs. Thus advocacy is a skilled process dictated by facts and evidence in the context of an individual’s wishes and choices. It involves counselling of the parties involved, with a clear understanding that the individual’s advocate is there to support that person. Obviously, advocacy occurs at different levels and some examples are given below.

Self advocacy

As indicated earlier, adults with Down syndrome often make superb self-advocates and this needs to be encouraged by us all, although we may not always recognise or agree with what they are advocating. Here quality of life issues clearly arise. The example in the box illustrates how professional advocacy and self-advocacy can be coordinated. The example speaks for itself, for it shows how motivation, self-image and educational skills plus the combining of skills can lead to effective self-expression.

Parents as advocates

Amongst the strongest advocates to help parents and professionals change views, and therefore attitudes, are other parents. The author recalls a parent workshop where some of the parents suggested that people with intellectual disabilities, including people with Down syndrome, should remain in a large residential facility, because their adult children were incapable of dealing with the outside world. These parents found it hard to accept examples of possible alternatives suggested by the workshop leader until one of the parents stood up and said, “These examples are the experiences that we have had with our daughter and we do need to change”.

Professional advocates

Advocacy should be an important role for all professionals who should recognise some of the personal and family issues. Indeed professionals are ethically required to advocate for adults with Down syndrome. However, professionals sometimes find themselves in conflict between individuals, management and services. Professional advocacy is a critical and important process within the world of adults with Down syndrome and it needs to occur at many levels.[see 71-72] Independent advocates encourage action over access and human rights are important. There also need to be impartial advocates amongst professionals, who can assist systems and professionals to change attitudes and values, and therefore opportunities. For the adult this relates not just to the health and education professionals but also parents and families.

Advocacy is about giving people appropriate and normal opportunities to grow and experience. For example, advocates need to help employers understand the role that people with Down syndrome can play in the work force. It is correct that adults with Down syndrome may need extra support and more time. It is true that some individuals may not make it. However, research and practice demonstrate that young adults with Down syndrome have clear ideas of what they would like to do and why, and their perception of opportunity is often wider than that of their parents and teachers.[73] During educational programmes for teachers run by the author, some individuals were surprised when shown a video of their former students’ achievements. The teachers were surprised at how effective many of them had become and what they were able to do.

One of the other books in the series looks at the role of advocates and advocacy organisations in helping adults with Down syndrome to achieve their optimum level of participation in the community. It describes how advocacy systems can be set up and provides practical advice for those seeking to represent the interests of adults with Down syndrome. A range of strategies for dealing with the kind of obstacles frequently encountered is outlined. While the need for advocacy exists in all countries, it is rooted more firmly in some countries than others. Advocacy is a means of opening doors and changing ways. It forms part of the necessary system of intervention and support required to enhance individual well-being. As such, it can also empower professionals who seek to improve the services they offer.

There needs to be advocacy for pilot projects, for there are many ideas to follow up and we do not have all the answers. Sometimes it is a matter of convincing individuals through example. Following the Salamanca Statement on education for all, made by UNESCO in 1994, (see box) it is important that all teenagers and adults have opportunity for education, further education and employment.[43] The issue of employment is critical because without it many other challenges arise. This relates again, to the quality of life principle of holism. If an individual has employment and earns some money, friendships, social interaction, leisure activity and other opportunities are enhanced.

Sheltered workshops abound and, at one time, they were an important step forward. However, advocacy should take us beyond this, because sheltered life, whether in a workshop or elsewhere, although generally better than nothing, does not permit general learning on a broad scale. It is critical that we understand the difference between specific and general learning, if we want individuals to become independent. In specific learning, we come to practise particular skills, often in artificial environments. Adolescents and adults with Down syndrome require natural environments where issues, small and large, emerge many times a day. It is through such situations, with support, that general learning occurs, and which enables each individual to apply knowledge in a range of situations. This is why teaching assistants and support workers are critical; people who can help guide and support as the person experiences and learns. For example, it is better to have a temporary guide as a partner or peer in a factory so that the individual learns the job (and then, when well established, the support person can move away), than to be directed by another person in a sheltered workshop for the rest of your working life. When people with Down syndrome are in the community, society comes gradually to accept them. They only appear different to those who have not been with them on a regular basis, just as foreigners seem and feel strange in a foreign country. The latter we tend to understand, but we have not reached this level of understanding about Down syndrome. Advocacy is also required in the examples used earlier concerning marriage. Occasionally parents have persuaded priests to “marry” people with Down syndrome without final signing of the legal documents, so they are not legally married. Here the negative advocacy was from the parent to the priest and disempowered the person with Down syndrome.

It is critical that, at all levels of a community, people advocate for the person with Down syndrome. The best situation is when the people with Down syndrome are able to advocate for themselves. They are safer and most effective when they can be in charge. This can only come about through opportunity, learning and experience.

Recreation and leisure

As indicated earlier, recreation and leisure play important roles in adult development and experience. Indeed, many argue that effective leisure is critical to quality of life[75] and so it is in Down syndrome. Leisure and recreation are part of the holistic picture of quality living and lifespan. They play an important role in development, experience and creation of positive self-image along with aspects of empowerment. They play a role in physical and emotional health.

Unfortunately, many young people are discouraged or not appropriately encouraged to be involved in such activities in recreation and leisure. These interests may be formal, as in preparation or performance in the Special Olympics in which a number of adults with Down syndrome do very well. However, less organised activities also play important developmental roles. Cycling, for example, can afford opportunities for pulmonary and vascular activity, but is also relevant to goal setting, exploring, planning and coming to understanding appropriate nutrition. Such activities are a way of increasing motivation and pleasure. Many people with Down syndrome are successful in activities such as dancing and horse riding. Other activities such as music painting and drama also can play important roles in overall development. They may be particularly relevant because of the importance of maintaining a reasonably high level of activity amongst adults who may not obtain full or regular employment. Mr. Aikido Ochi is a pianist and composer from Japan with exceptional talents, who obviously has developed a range of skills where recreation and vocational interests work hand in hand. Others are writers who, with the help of friends or parents, have had books of verse and humour published. For example, Shona Robertson, who lives in Indonesia has just had a book published called “The Beauty of Life”. Not all adults with Down syndrome may aspire or achieve these levels of activity, but regardless of this, all individuals require encouragement and opportunities in areas of recreation and leisure. They are not frills but vital activities, which require further government and community support. Activities need to be balanced.[40] The challenge is that, frequently, such activities for many young people do not commence early enough in life. They are something which should begin early with a view to later activity and pleasure. Exposure and opportunity are critical. Further, many of the activities of adults with Down syndrome are sedentary and this tends to increase over the adult years.[see 16] If these predominate negative self-image, poorer health and emotional difficulties, amongst other challenges, can arise.

We know many adults reduce their active leisure and recreation as they move into their late twenties.[76] This is true of many disabilities but appears particularly noticeable in Down syndrome. It is worth noting that this age period is also one where depression and allied emotional difficulties are being encountered. They may not be unconnected. The development of activities, and with these, exploration, encouragement and choice, are important and should be recognised by professionals and family members. They are also critical within home care and support and community living.

Other important issues

So far, some of the overriding generic issues have been discussed, but there are other important areas which require an introduction. These issues are discussed at length within specific books in this series; however, this section aims to show how they relate to the series as a whole and provides examples of the types of issue that can arise. Sometimes the challenges are straightforward; at other times there is no easy answer but it will be necessary to discuss the issues locally. Many of the adult issues relating Down syndrome are societal and as indicated elsewhere are due to society’s attitudes and values. The examples provided in this section serve to heighten the issues and challenge the reader to address the challenges that they present.

Women and Down syndrome

Many social, psychological and physical issues particularly relate to women with Down syndrome. For example, young women are often highly protected in terms of their involvement in the community. This, and allied factors, often reduces self-image and results in under functioning.[77] The issues for young women with Down syndrome around menstrual issues are often complicated by language or inability to express feelings and needs, but more often by lack of mature discussion with them by other responsible adults. The symptoms of premenstrual events seem to be more diffuse and emotional outbursts more common, with individuals unable to understand their own behavioural fluctuations. Other adults in caring roles may not recognise symptoms, which appear more diffuse and varied than amongst women who have a good knowledge of their bodies. In fact, one of the issues that has to be dealt with for both men and women is the importance of knowing and understanding one’s own body.

Health and well-being

Many of the health issues of people with Down syndrome are dealt with prior to the adult years, yet many of the concerns still need to be monitored. In addition, there are new issues which need to be considered and, because people with Down syndrome are living longer, issues are emerging which were previously rarely encountered or are now being monitored and investigated for the first time.[see 78-80] For example, the issue of ageing and Down syndrome has raised questions about links with Alzheimer’s disease. Yet it is now known that people with Down syndrome, although ageing, do not necessarily develop Alzheimer’s disease or other conditions of dementia. On the other hand, people with Down syndrome are prone to conditions of hypothyroidism, which may often go unnoticed. A number of adults with Down syndrome are still found to suffer from hypothyroidism, having been undiagnosed for many years.[see 81]

t is examples such as Rebecca’s (see box) that indicate the need for regular and appropriate health checks throughout life. It is also important to note, as this case demonstrates, that poor health can have a major impact on all other aspects of life. If we consider the characteristics of quality of life and well-being, this woman had apparently lower well-being on most if not all measures of quality of life. She had poor motivation; her appearance and other attributes (e.g. fatigue) reduced her likelihood of getting or even seeking employment. She was not interested in inclusion within the community or even within her own group living accommodation. In terms of leisure and general physical stamina and skills, she was robbed of sufficient motivation and energy to be involved in pursuits that would encourage and help development.

The complex relationship between physical and emotional health needs to be more clearly recognised, not only by professionals and family, but also by the individual. Individuals may need direct instruction to help them to understand why they feel as they do. Issues relating to obesity, nutrition, and appearance may also impact on physical and emotional well-being. Obesity, which is a common health problem for adults with Down syndrome, needs to be monitored, not just for physical health reasons but also for psychological well-being. Maintaining a balanced diet and participation in physical exercise can help improve health and physical appearance and this, in turn, can improve social acceptance in the community and general motivation. Personal hygiene, grooming and dress are also be factors for consideration in improving appearance, self esteem and psychological well-being.

Sexual health and well-being are also important aspects of life, which can contribute to overall well-being. Once again, knowledge of one’s body and sexual development are important. Awareness of sexual needs in the context of appropriate behaviour is necessary. Education should start in the early years and, as maturation takes place, not only should the issues of sexuality be presented, but set within the context of normal development with an awareness of health, social and personal needs and challenges. Sexual health and well-being should be taught within the context of community expectations and family sensitivities. It should also be recognised that ignorance of sexuality and acceptable and non-acceptable behaviour is not productive. Preparation for a sexual adult life, with its positive experiences as well as the possible risks, should be undertaken within the framework of healthy development and respect for oneself. Contraception, the right to privacy, the ability to protect oneself from abuse as well deal with the challenges set by potential sexual diseases such as HIV, can be understood by many, particularly in a concrete and visual format. As far as possible, teaching should involve concrete and visual examples with modelling of appropriate behaviours through the use of activity education groups, using drama techniques and counselling.[62]

There is a range of other issues that need to be addressed during the adult years. Dental care is an important ongoing issue, as it is for all adults.[82] Vision and hearing, which can often be impaired in individuals with Down syndrome, should continue to be assessed and corrected through adulthood. Podiatry has also been shown to be effective, and the author found the demonstration work carried out by Carl Parsons and his colleagues at La Trobe University in Australia for persons with Down syndrome to be an impressive and useful example.

The relationship between health professionals and adults with Down syndrome is very important. For example, it may be difficult for a general medical practitioner to understand a person with Down syndrome because of speech problems, but it is important, even if they need help to understand the person’s speech, that they go on trying to understand and that they always explain their actions and recommendations to that person. Some of this can be done visually through pictures and drawings. It is important that medical practitioners show adults what is happening in and to their bodies. People with Down syndrome, in particular, understand far more than they can clearly verbalise. To ignore them, or talk primarily to the person who is accompanying them, when they can really understand, is a blow to self-esteem just as when any of us is ignored, or thought to be confused or unable to comprehend.

Emotional development

Like all young people, teenagers with Down syndrome experience hormonal changes during their early adult years. The more impoverished the environment, the more likely delays are to occur, but a sequence of events similar to other teenagers and adults can be expected. The psychological and behavioural developments, however, tend to take place over longer and sometimes delayed time-periods. Once again, there are considerable individual differences.

Mental health issues

Some people with Down syndrome have mental health challenges similar to those in the general population. However, the symptoms are often unrecognised, partly because it is often assumed that the behaviour represents part of the ‘expected behaviour’ of people with Down syndrome or relates to their personal lifestyle. Depression that requires formal treatment can be influenced by poor self-image and inactivity, and this is a major issue for adults. [for detail, see 83-84]

 It is now recognised that people with Down syndrome may experience mental health difficulties such as schizophrenia, depression and Asperger’s syndrome and it is vital that these conditions are diagnosed and treated effectively. Signs and symptoms including withdrawal, poor self-image, distorted and bizarre perceptions, feelings of uselessness, hallucinations and delusions may be caused by treatable mental illnesses. These behaviours should be recognised as soon as possible and immediate action taken through professional assessment and appropriate interventions. These may involve counselling, for which special skills are required, behavioural management, psychological therapy or the use of medication. For many of the serious mental health issues it is generally agreed that both behavioural and pharmaceutical interventions are required on a coordinated basis. All medication should be monitored and checked regularly; many adults with Down syndrome remain on drug prescriptions for many years without adequate reviews. Over time, drugs may be inappropriate and cause toxic effects. It is also important to ensure that physical illnesses are not overlooked, as conditions such as thyroid deficiency are quite common amongst people with Down syndrome and are often mistaken for other conditions, e.g., depression. Increasingly, there are psychiatrists and psychologists who have knowledge of disability in conjunction with mental health issues and it is wise to check that referrals are made to such individuals.