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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

Informing Families

Informing Families Consultation and Research Report The National Federation of Voluntary Bodies Providing Services to People with Intellectual Disability, in its Report to Oireachtas Committee on Education & Science (Walls & Swinburne, 2006), strongly recommends that the assessments under both the Disability Act, 2005 and the EPSEN, 2004 are co-ordinated in the interest of the child. The development of a person-centred, holistic, whole-life, strengths and needs-driven joint integrated assessment and IEP process to meet the requirements of the EPSEN Act and Disability Acts for people with intellectual disability will require co-ordination between the Department of Health & Children, the Department of Education & Science and the Health Service Executive. The recommended model put forward by the National Federation of Voluntary Bodies is illustrated in Figure 2.1, below. Figure 2.1. National Federation of Voluntary Bodies Integrated Assessment Interventions Model EPSEN 2004 Requirement Individual Education Plans Assessment Person Centred Planning A recurrent theme emerging from the strategy and policy documents above is the need for co-ordination and liaison across all organisations providing services to people with disabilities and their families, a principle which is echoed in the aims of the HSE Transformation Programme (2007-2010). Beginning now, and during the next five years or so, the goal of the Health Service Executive is to build a world class health service in Ireland.At the heart of this transformation will be programmes that make it easier for people to access quality services and easier for the HSE to deliver these quality services. (An introduction to the HSE, p.3. www.hse.ie) Currently in the Republic of Ireland, there is an absence of a single national policy guiding good practice for sharing the news, and consequently there are variations between regions, and between agencies (South Western Area Health Board & Rush, 2003; Western Health Board & Brothers of Charity Galway, 2003). As might be expected, this lack of consistency is reflected by 39 Disability Act 2005 Statement of Need 2. LITERATURE REVIEW

Informing Families Consultation and Research Report a continuum of experience reported by parents (Kealy, 2004). Whilst elements of best practice are in place informally and sporadically, there is no one strategy, no consistency, and no standard guidelines to guide practice (Doyle 2004). The potential negative effects of a lack of consistent policy have been described above, where parents have had adverse experiences and lack vital information about the services available to them (Cunningham, 1994, Redmond, 2000). The provision of guidelines for informing families of their child’s disability is endorsed by the recent United Nations Convention on the Rights of Persons with Disabilities, which strongly affirms the dignity and worth of children with disabilities in the opening preamble and inclusively in Article 1 on Purpose, Article 3 on General Principles, Article 8 on the Right to Life and specifically in Article 7 on Children with Disabilities. Further detail is available at: http://www.un.org/esa/socdev/enable/rights/convtexte.htm Clearly then, the implementation of best practice in how families are informed of their child’s disability is strongly supported by the recent UN Convention and a wide range of Government policies and strategies, and has remained so over the past two decades. These documents call for the introduction of specific measures to support best practice in the disclosure of a disability diagnosis but as yet remain unimplemented, with a lack of consistent or coherent protocols or policies in operation on the ground to guide staff members who support families at this time (Doyle, 2004; South Western Area Health Board & Rush, 2003), and a lack of available information to provide to family members in spite of clear recommendations (Redmond, 2000; Western Health Board & Brothers of Charity Galway, 2003). Literature Review Summary In summary, the literature review has shown that the area of how families are informed of their child’s disability is one in which there is an existing lack of comprehensive Irish research and this has led to the current study undertaking further national investigation.The way in which the news of their child’s disability is communicated is an important process, which has an impact on the amount of information parents absorb and understand, and can impact on their adaptation to having a child with a disability. The disclosure process has also been shown to impact on attachment between child and parent. Poor practice can increase the risk of litigation. The skills required for positive disclosure processes are an area in which professionals have identified current deficits. Dissatisfaction with disclosure is not inevitable, and the provision of good practice is a key determinant of parental satisfaction. There is broad agreement in the literature on what constitutes best practice, with recommendations covering a wide range of areas including the location, setting, people present, information provided, cultural and language, communication skills, planning and organisation and training provision. The development of guidelines for best practice in how families are informed of their child’s disability is fully in line with Government strategy and policy documents over the past seventeen years, and will require a specific and comprehensive implementation strategy to ensure that the recommendations become widely adopted. 40

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