Written for parents, carers and professionals who have responsibilities for people with profound intellectual and multiple disabilities, Listen to Me focuses on two crucial issues:
- How to cope with the complex problems of someone with this level of disability, interpret their needs successfully, and maintain effective contact with all the professionals and organisations who deal with them.
- How to enrich that person's experience and ensure that others value him or her as a distinct individual with a right to a meaningful life.
Highly practical, and using examples from the author's experience with her own daughter, each chapter deals with communicating such rights and needs in particular situations, and includes references for further information and reading. The author explains how to prepare a Care Book which includes the essential personal information, not simply about medication and physical procedures but about the individual's interests, preferences and background. She explains how it can be used to communicate effectively with busy professionals.
Pat Fitton's experience of profound and multiple disabilities comes from caring for her daughter Kathy, who died in 1991 at the age of twenty-seven. She has worked in several parents' groups to improve services and has campaigned to increase parental participation in planning procedures in social services and health. She has taught in inner London secondary schools since 1964 and has been involved with the integration into mainstream of children with a range of disabilities.
Acknowledgements. This Book is not... This Book is for... Foreword by Harry Marsh. Introduction: Kathy. Part One: Learn About Me. 1. Diagnosis and First Contact with Hospitals. Part Two: We Need to Communicate. 2. We Need to Communicate. 3. Writing to People. 4. Telephoning. 5. Talking to People. Part Three: Tell Them About Me. 6. The Care Book. 7. Diaries. 8. Information Sheets. 9. Medication. Part Four: 10. In Nursery, School or Centre. 11. Respite and Residential Services. 12. Independent Living Arrangements. 13. Wheelchairs. 14. Mobility, Equipment and Adaptations. 15. Benefits. Part Five: Doctors and Hospitals. 16. Your G.P. 17. In Casualty. 18. In Hospital. 19. Things Can Only Get Better... Part Six: 20. Leisure Activities. 21. Families and Friends. 22. The Future - Wills, Trusts and Guardians. Part Seven: Conclusion. 23. Who Cares for the Carers?