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Preface

Gothard, J. (2007) Preface. Down Syndrome: Needs, Opinions, Wishes - Study Report .

Abstract

This work encapsulates the points of view and experiences of more than 300 families of children and young people with Down syndrome across Western Australia. Based initially on questionnaire responses, the material presented here was further shaped and moulded by parent focus groups working in conjunction with the Telethon Institute for Child Health Research. The resulting publication documents the experiences, hopes and expectations of a significant portion of a particular Western Australian community group: people who live with Down syndrome.

Focusing on three parameters - the individual, the family, and the community - the data and statistics give an invaluable and previously undocumented insight into some of those aspects of life which can be quantified. Health and medical conditions, weight and diet, social and recreational activities, employment and post school options and strategies are just some of the areas surveyed. The study also addresses the significant issue of community engagement and support through factors such as education, therapy, and government and non-government services. The statistical data is clearly and accessibly presented and is a wonderful resource for anyone seeking concrete data on Down syndrome.

Combined with evocative comments from parents and caregivers, all of which add colour and flesh to the data, the report is, however, even more than a compilation of valuable statistics. As a parent, I found the comments confirmed my awareness that some social, physical and emotional characteristics are often shared by people with Down syndrome, whereas others reminded me that we all experience aspects of disability in unique ways. The use made of personal commentary reinforces the value of the statistics.

This is a wonderful resource for anyone interested in disability today, but particularly so for parents, families and carers of people with Down syndrome, who will fi nd this publication helpful, reassuring and extremely informative.

Publication Type: Others
Murdoch Affiliation: School of Social Sciences and Humanities
Publisher: WA Telethon Institute for Child Health Research
Publishers Website: http://www.childhealthresearch.org.au/media/374477...
URI: http://researchrepository.murdoch.edu.au/id/eprint/14373
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