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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

TABLE OF CONTENTS List

TABLE OF CONTENTS List of Abbreviations 6 Executive Summary 7 National Best Practice Guidelines 10 1. Introduction 20 2. Literature Review and National Policy Context 22 3. Consultation and Research Strategy 42 4. Consultative Focus Groups with Parents and Professionals 48 - Methodology 48 - Results 51 5. National Questionnaire Survey of Parents and Professionals 78 - Methodology 78 - Results 86 6. Discussions and Conclusions 140 - Discussion of Findings 140 - Validity of the Findings 146 - Conclusions 147 - Recommendations: Best Practice Guidelines 150 7. Next Steps – Implementation Planning 160 References 161 Appendices Appendix I Background information on National Federation of Voluntary Bodies 165 and Health Services National Partnership Forum Appendix II Informing Families Project Steering Committee - Terms of Reference 165 Appendix III Informing Families Steering Committee - Membership 166 Appendix IV Announcement Letter & Information Letter 167 Appendix V List of Tables and Figures 169 Acknowledgements 172 Informing Families Consultation and Research Report 5

Informing Families Consultation and Research Report LIST OF ABBREVIATIONS ● ASD – Autistic Spectrum Disorder ● CAMHS – Child and Adolescent Mental Health Services ● ENT – Ear, Nose and Throat ● EPSEN – Education for Persons with Special Educational Needs Act, 2004 ● ERHA – (former) Eastern Regional Health Authority ● GP – General Practitioner ● HSE – Health Service Executive ● HRB – Health Research Board ● HSNPF – Health Services National Partnership Forum ● IEP – Individual Education Plan for Children ● NICU – Neonatal Intensive Care Unit ● NIDD – National Intellectual Disability Database ● NCHD – Non-Consultant Hospital Doctors ● NPSDD – National Physical and Sensory Disability Database ● OPD – Out-Patients Department ● PHN – Public Health Nurse ● RNID – Registered Nurse – Intellectual Disability ● RFTS – Right From The Start ● SCBU – Special Care Baby Unit ● SHO – Senior House Officer ● SpR – Specialist Registrar The following terms have been used within the report for ease of analysis and reading The term ‘parent’ is used in this report to indicate guardians of the child and respondents to the national parent questionnaire survey which included parents, adoptive parents, foster parents, and grandparents. The term Trainee Doctor was used to record references to doctors in training throughout the report which included Non Consultant Hospital Doctors (NCHD’s), Senior House Officers (SHO’s), Registrars, and Specialist Registrars (SpR’s). The term Ultrasonographer was used to refer to Midwives and/or Radiographers performing obstetric ultrasound examinations. 6

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