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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

APPENDIX I Informing

APPENDIX I Informing Families Consultation and Research Report The National Federation of Voluntary Bodies The National Federation of Voluntary Bodies (NFVB) is a national umbrella organisation for voluntary/non-statutory agencies who provide direct services to people with intellectual disability in Ireland. It aims to promote the equalisation of opportunities for persons with intellectual disability through the provision and development of high quality, person centred services. In developing best practice guidelines for how families are informed of their child’s disability, the NFVB has worked with the Department of Health and Children, and with physical and sensory disability service providers to ensure that the scope of the project includes how families are told of all disabilities; physical, sensory or intellectual. The Health Services National Partnership Forum The Health Services National Partnership Forum (HSNPF) is a joint management / trade union steering committee for workplace partnership in the Irish health service. The HSNPF was established in 1999 on foot of the provisions of Partnership 2000, the national agreement on social partnership then in place. APPENDIX II Informing Families Project Terms of Reference The National Federation of Voluntary Bodies, with the support of the Health Services National Partnership Forum, has initiated a project to develop and implement national best practice guidelines for informing families that their child has a disability. This is a Department of Health & Children, and HSE supported initiative. Project Aims 1 To develop National Best Practice Guidelines for informing families of their child’s disability at the first stage of communicating a diagnosis or concern. 2 To recommend education and training for staff involved in informing families. 3 The guidelines will be developed through research involving hospital, community care and disability services; management and staff; and families of children with disabilities. 4 The intended outcome of the guidelines will be: - National Best Practice guidelines implemented and in practice in effectively informing families about their child’s disability - Guidelines available in every hospital, community care setting and disability service provider in the country - Improved communication with families - better outcomes for children and families - Improved skill and confidence in staff in informing families, through training - Improved information - Improved practice at national level across all departments. 5 The research is guided by a Steering Committee, which is chaired by Dr. John Hillery, President of the Medical Council of Ireland (2004-2007), and is co-coordinated by Alison Harnett, from the National Federation of Voluntary Bodies. The Steering Committee has representatives from key groupings such as parents, professionals working in disability services, the Health Services National Partnership Forum (HSNPF), the Department of Health & Children, the HSE, the National Federation of Voluntary Bodies, and the relevant training bodies such as the Royal College of Physicians of Ireland. 165

Informing Families Consultation and Research Report APPENDIX III Chairperson: Dr. John Hillery President of Medical Council of Ireland (2004-2007) and Consultant Psychiatrist with Stewart’s Hospital An Bord Altranais Ms. Anne-Marie Ryan* Brothers of Charity, Galway Ms. Catherine Rourke Department of Health and Children Ms. Ann Field** Health Services Executive Ms. Evelyn Hall 166 Ms. Breda Kavanagh Ms. Suzanne Kirwan Health Services National Partnership Forum Mr. Eamon Naughton Irish College of General Practitioners Dr. Claire Collins Irish Nurses Organisation Ms. Annette Kennedy Irish Society of Speech and Language Therapists Ms. Anne Mulvihill Inclusion Ireland Ms. Mary Egan National Federation of Voluntary Bodies Mr. Brian O’Donnell Ms. Alison Harnett Ms. Edel Tierney*** National Parents and Siblings Alliance Ms. Karen Canning Mr. Anthony Casey National Social Work Qualifications Board Ms. Bernie Fay Psychological Society of Ireland Ms. Margaret Farrelly Royal College of Physicians of Ireland Dr. Tony Walsh Dr. Matt Conran School of Nursing and Midwifery, Trinity College Dublin Dr. Joan Lalor Sisters of Charity of Jesus and Mary Services Mr. Stephen Kealy St. Michael’s House Ms. Anne Walker * Previously represented by Mr. Thomas Kearns ** Previously represented by Ms. Mary O’Reilly *** Previously represented by Ms. Maria Walls, who remains a part of the Project management team

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