LIVES AND TIMES

Reviewed by Anne McCarthy, Research Officer, Stewarts Hospital, Dublin 20-

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This is an excellent, attractively produced textbook for all professionals in the field of intellectual disability, and I have little doubt that it will be recommended as such worldwide. This publication adopts a global perspective, yet focuses on the Irish context. Sixteen chapters comprehensively incorporate service provision, professionals, families, lifespan aspects and issues of best practice.

Each chapter is a specialist-professional text in its own right, well placed within its own subject bibliographies. This review is therefore rather long because all sixteen chapters deserve mention in a book that will be a must-have for libraries and resource departments. In their introduction, the editors salute tomorrow’s agents of change, hoping that this book will be a resourceful companion on their journey to improve the quality of interventions on behalf of people with intellectual disabilities.

Bob McCormack’s description of the six phases of service development over the last two and a half centuries makes fascinating reading and puts in perspective the great advances of the last twenty years. He tells us that the recent trends in service development have the potential to coalesce into a new model of service for which the underpinning principles will be that special needs are ordinary needs, with supports. The service is delivered and managed locally, designed afresh for each individual, delivered by people, not by places. It is for everyone in a support role, promoting community development and viewing the individual in a holistic way.

It is appropriate that Roy McConkey’s review of staffing issues follows. The key issue for all intellectual disability services must be the recruitment, deployment and management of effective staff. How to give service-users the primary say in what support is provided and how it is to be provided is the biggest challenge currently facing staff in service agencies. McConkey identifies the major changes that are required in Intellectual disability services to make them ‘fit for purpose’ in this new century. Some of these changes will require radical changes in the structure of services, with more people being served through a collection of smaller, locally-based and person-centred services, each with a discrete function.

In this early 21st century, we are on the brink of another evolutionary leap into a person-centered, rights-based ethos of support. Some of the changes will involve the creation of new staff posts with differing support functions. New forms of funding services will also be created. Roy McConkey refers to direct payments schemes recently introduced in Britain. He concludes that the only constant is change, and that experience has taught us that the ingredients for a competent workforce are: attitude, knowledge, skill, empathy and commitment. He highlights the fact that many families epitomise these five attributes better than the best services, because it is their loved one for whom they care with their altruistic, self-sacrificing actions. In the business and career ethos of modern society, is it too much to expect paid staff to display this kind of love? McConkey points out that if we do not keep such feelings alive, we have little hope of truly meeting the needs of people with intellectual disabilities.

Mark Mulrooney and Mark Harrold’s chapter, ‘Parents’ voices’, makes very sobering reading and is a heartbreaking portrayal of loneliness, insecurity and isolation. Hearing the news, adjusting to life with a child with intellectual disability, the other children in the family, experiences within the caring services, fears and advice for the future—all these family insights make for essential reading.

The wonderful quotes from parents illustrate the totality of their experience and puts excessive professional jargon firmly in its place. Their varied accounts of accessing services give an overall picture of honorable and hardworking, but also ineffective and insensitive, systems and services. However, the they generally found services satisfactory, once they had accessed them.

The best supports can be other parents—the best therapists-counselors-confidants and supporters are other parents and Mulrooney and Harrold urge parents to make the effort to contact other parents. They conclude that professionals will never quite appreciate how hard parents have to work in order to maintain and develop their dependent offspring and that perhaps this is the reason that neither governments or service providers have ‘provided sufficient supports for families to date.

It is evident that parents are no longer prepared to accept piecemeal services. In the future they will demand the kinds of support services that will enable them to enjoy normal family life, with a minimum of adjustment owing to the needs of their intellectually disabled child.

Stephen Kealy’s chapter, ‘Early intervention’ represents a professional response to the previous chapter. The first Irish programme of early intervention was in the late 1960s and often during those early decades clinical teams did not perceive parents as active participants in the development of their children’s lives. The story is one of gradual evolution from the assessment and diagnosis role, to one of meaningful intervention with families.

Kealy highlights the growing awareness of the need to involve and collaborate with parents as partners in the care of their young children. However, the lack of an explicit national policy has led to a rather haphazard approach to early intervention provision in both voluntary and statutory organisations.

Kealy points out that family-support programmes are mandatory in the USA, while Irish programmes still have no legal basis. He concludes that the Department of Health and Children, together with the Department of Education and Science, must start implementing programmes of early services on the basis of a visionary national strategic policy.

In their chapter entitled ‘Creating an inclusive curriculum’, Carpenter and Shevlin explore the rationale for developing inclusive educational provision. They focus on the rights of the child as a learner. How do we design learning environments and learning activities that will ensure that each child is an active participant, watching the activity of others? They stress that it is important in our own definitions of inclusion to think of children with all kinds of special needs and learning difficulties within the education system, regardless of the setting.

An inclusive curriculum is fundamentally a framework for enabling pupils of all abilities to show that they know, understand and can do (and can do so together in the jigsaw approach). Inclusion is a process, not a location; it involves interacting, networking and relating to a wide variety of people. The concept of inclusiveness is not synonymous with integration, but is a larger and prior concept.

Shay Caffrey addresses that rocky road to adulthood in his very comprehensive chapter ‘Adult relationships and sexuality’. The author comprehensively addresses the varieties of relationships that exist in the lives of all of us—family, educational, occupational and community—and the needs that these relationships fulfil. Social interaction is required on a number of levels. People with intellectual disabilities often have great difficulty understanding and matching the appropriate responses to these varying levels of relationship.

Caffrey stresses that it is the responsibility of staff to facilitate the person with intellectual disability to maintain kinship relationships. Staff can also create the conditions for nurturing the development of various kinds of relationships. The complex and subtle rules of social interaction present the constant dilemma of this aspect of service delivery. I like the way four of Maslow’s categories are used to explore the relationship needs and the different levels of personal fulfilment within these relationships—physiological, safety, long and belonging, and esteem needs.

Caffrey maintains that there is a tendency to see this topic in terms of sexual love alone. whereas it is far wider than that; Maslow’s categories illustrate the normal desires and needs of a person, with or without an intellectual disability. Feelings of comfort and security are experienced when these needs are met, and the emotional consequences can be complex if they are not met. The varieties of love highlight the complexity of devising education programmes that address this sensitive service-provision issue. The balance between risk and autonomy is well addressed and this section makes excellent reference for services. Phrases such as ‘the prison of protection’ and ‘the ring of safety’ amply illustrate the dilemma between individual’s rights, their need for protection and the responsibility of providing adequate opportunities for personal growth, social development and interaction.

Cultivating and facilitating relationships on these many levels is a key responsibility of both the service provider and family members of the person with in intellectual disability. Guidelines and suggestions are well documented. This chapter is a must-have reference for all professionals working with this age group.

The relationship between parents and professionals is a complex one, as Báirbre Redmond points out in her chapter, ‘Parents and professionals: Exploring a complex relationship’. She gives an interesting review of the attitudes of professionals towards parents over the centuries. She highlights the reality that the adequacy of services offered to the person with intellectual disability has a considerable impact (positive or negative) on that person’s extended family and vice versa—the quality of responses that families receive from service professionals also affects the overall well-being of the individual with intellectual disability.

Professionals tend to pathologies parents—treating the entire family as ‘ill’ and ‘in need of treatment’. Because of the impact of disability, this is an understandable reaction in many ways. However, the author stresses the importance of perceiving parents as people in their own right and she advocates a more responsive and collaborative professional practice that would benefit parents and professionals alike. A ‘reflective relationship’ is one of partnership and equality, where each is mutually accountable, with equal strengths and expertise.

In their chapter ‘New prospects: Ageing with intellectual disability’, Patricia Noonan Walsh and Chris Conliffe maintain that service providers must develop the capacity to support individuals for a longer lifetime than had, perhaps, been predicted.’ They present a summary of the typical characteristics of older people with intellectual disability during their life course. This life course paradigm has four key themes that influence the substance and course of human lives: historical times, social timing, linked lives and human agency. Today (2004), in the Irish Republic there is a notable growth in the proportion of Irish persons with intellectual disability born 1942–1961.

Patricia Noonan Walsh and Christy Lynch examine the impact of two divergent pathways for adult occupation—traditional, sheltered day activity and open employment in their chapter, ‘Trends in employment’, which illustrates a steady and persistent revolution in the area of work and employment for all citizens of the European Union.

Three key issues must be resolved before the open inclusive model is universally applied:

  • Person-centred planning—for all to harness the energies of family, friends and advocates to make provide whatever is necessary to make the vision a reality.
  • Funding two parallel systems is untenable.
  • The Social Welfare system must address the disability allowance issues.

EU Policy promotes the mainstreaming of all services for people with disabilities as a matter of right. The authors make an excellent case for mainstreaming all policies; they give a picture in which the traditional paradigm is no longer an option.

The chapter ‘Spanish and Irish images of special needs: Perceptions of inclusion’ examines attitudes and images relating to inclusive education programmes, with a view to more fully understanding the socio-emotional context within which inclusion takes place. A second set of studies examines in more detail children’s and parents’ attitudes towards integration. In the microcosm that is a classroom or school, attitudes play a central role in determining the success of integration and inclusion.

The authors present a series of studies designed to examine attitudes towards children with intellectual disability and Down’s Syndrome, and their education. The first two questionnaire-based studies compared Spanish and Irish primary school children, and the second two provided evidence of the validity of the questionnaire as an evaluative instrument.

The Spanish Ministry of Education has actively promoted integration since 1985, whereas in Ireland the measures to help primary school teachers with integration have been less prominent. In these studies, Spanish children were more sociable towards children with intellectual disability than were the Irish children.

Regrettably, this chapter is not compatible with the rest of this book; because of its highly-technical format, it would be better placed in an academic scientific journal. The authors, Hugh Gash, Nuria Illán Romeu and José Antonio López Pina, have not adapted the account of their highly credible research for a non-scientific readership, which is a surprise, and a pity because their work makes a valuable contribution to the literature on early integration at primary-school level. The chapter’s many tables and highly technical script seem misplaced in this publication. I strongly recommend re-editing it if there is a future edition.

The central theme throughout John McEvoy’s chapter, ‘Behaviour supports’, is that behaviour support is not simply a matter of eliminating problem behaviour, but involves teaching new skills, changing and enriching the environment, and providing increased choice. The chapter closes with a discussion on the implications of adopting behaviour support principles for carers and service providers.

McEvoy stresses that support should be for life and not just crisis intervention. Early intervention is essential. I liked his positive approach that behavioural support is about a positive change in lifestyle—about developing social relationships, personal satisfaction, self-determination, social inclusion, meaningful employment and a happy life for people with intellectual disabilities.

Alan Carr’s chapter ‘Family therapy and intellectual disability’ is an interesting and excellently written resource for parents of young children and for teaching professionals. It includes guidelines that can be adopted by parents with some assistance from a professional. Carr stresses that nowadays it is more expedient to think of the child’s family as a network of people in the child’s immediate psychosocial field. In clinical practice the primary concern is the extent to which this network meets the child’s developmental needs.

‘A good place to live: The quality of residential supports’, by Patricia Noonan Walsh, Eric Emerson and Janet Robertson, identifies current trends in patterns of residents and briefly highlights the issues involved in appraising the quality of residential supports. They examine the measures of quality used in appraising the outcomes for residents, and they discuss implications for both practice and policy in building supports that are likely to enhance the quality of residents’ lives.

I like the title of this chapter, which highlights that living is about the quality of life that takes place (with supports) within buildings, rather than giving the buildings centre stage. Currently, there is no overall mechanism in Ireland to link service model and costs either with indicators of the quality of residential supports or with user outcomes.

The table of outcomes for residents in Ireland is a useful reference, as is the summary of the comparison and analysis of outcomes for Irish group-home residents and those in campus residential settings. It is interesting to note that the costs of residential supports did not predict quality of outcomes for residents. This reflects similar findings from a larger UK study. The authors recommend future research to inform policies to shape residential supports that are more likely to yield measurable benefits for men and women with intellectual disabilities.

Although the move from charity to rights has received a significant amount of recognition in legislation, it is questionable whether the Irish Constitution of 1937 is up to these developments. So states Shivaun Quinlivan in the her chapter, ‘Law and disability in Ireland’. The Constitution takes precedence over all other laws, with the exception of European Community Law, and basically, the equality guarantee has failed to further the principle of equality in Irish law.

This chapter makes essential reading in our litigious society of 2005. The Education Act 1998, The Equal Status Act 2000, and The Employment Equality Act 1998 (and their enforcement mechanisms) are discussed in detail. The author stresses that the Education Act 1998 contains no right to education and has engendered a system wherein the parent who shouts loudest and longest is most likely to receive support services.

However, in The Education Welfare Act 2000, the government has committed itself to acting on the recommendations laid out by the Commission of the Status of People with Disabilities 1996. While the rights ideology may have been accepted, the difficulty now lies in translating that ideology into enforceable legal rights. There are difficulties in doing this because the Constitution remains weak—and only a constitutional change can remedy the situation.

The final chapter, by Gerard Quinn and Anna Bruce, is entitled ‘Visible citizens: Human rights and disability’. The new human rights agenda in the field of disability is outlined, pointing out how rights can be harnessed to enable people with disabilities to take their place in the mainstream. The subject of disability provides tangible proof of the interdependence and invisibility of two sets of human rights—civil and political, as well as economic, social and cultural. The authors point out that both sets are very deeply connected.

Set against the backdrop of the use of rights to empower people, economic, social and cultural rights provide a bridge whereby people with disabilities can take their place as valued and often highly productive citizens and facilitate freedom, enabling people to take charge of their own lives. The four connected human values within international human rights law are dignity, autonomy, equality and social solidarity. The chapter concludes by referring to the special Ad Hoc Committee of the UN, which in 2002 began a process of drafting a legally binding treaty on the Rights of Persons with Disabilities. This global context is important because the majority of the world’s six hundred million people with disabilities live in developing countries.

Conclusion and critique

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There is something in this book for everybody, and each chapter requires its own in-depth, topic-specific review. How they jell in one publication is debatable and some chapters might have been better published elsewhere. In an unfortunate editorial error, Roy McConkey, Nuria Illán Romeu and José Antonio López Pina (other accents here??) are missing from the list of contributors. A good subject index is notable in its absence and would certainly be recommended for future editions, as is the re-editing of chapter eleven.

However, from a less literary perspective, all of life is here and complexities, contradictions and all are highlighted—inclusiveness of the life of a person with intellectual disability. This book cannot not be read quickly, but it will form an invaluable reference book in the exciting and challenging years ahead. We can all be proud that it is an Irish publication of professional excellence.

LIVES AND TIMES: Practice, policy and people with disabilities, edited by Patricia Noonan Walsh and Hugh Gash (2004). PO Box 69, Bray, Co. Wicklow, Rathdown Press. €35.00 (including postage)

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