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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 2.8 National Legislative and Policy Perspective The issue of how parents are informed of their child’s disability is one that has received specific mention in successive Irish national policy and strategy documents over the past seventeen years. There are several key documents relevant to the development of national best practice guidelines in this area: ● Needs and Abilities (1990) ● A Strategy for Equality (1996) ● Towards an Independent Future (1996) ● Quality and Fairness (2001) ● Education for Persons with Special Education Needs Act (2004) ● Disability Act (2005) ● HSE Transformation Programme (2007-2010) In mapping out the Irish policy context relating to disclosure of disability, it should be noted that this is an area for which responsibility crosses various Government departments including the Department of Health and Children, the Department of Justice, Equality and Law Reform, the Department of Education and Science, and the Department of Social and Family Affairs. There are several key policy and strategy documents which reinforce the importance of good practice in this area from as far back as 1990. Needs and Abilities, compiled by the ‘Review Group on Mental Handicap Services’ in that year, is the most recently published Government strategy on policy for people with an intellectual disability in Ireland. As mentioned above, it sets out the importance of how the news is delivered: The manner in which the information is conveyed can have an important bearing on the attitude of parents throughout their child’s life. (Review Group on Mental Handicap Services, 1990, p.21) This report makes several recommendations that relate specifically to the communication of the diagnosis of a child’s disability to parents. It states that relevant skills should be emphasised in training programs for professionals who are likely to communicate this news. It also details the need for close liaison between the maternity and general community health services for children and services for intellectually disabled persons. On the topic of information provision, Needs and Abilities asserts that the needs of parents will be many and varied at this time. All are likely to require information, support, and practical advice, and the report recommends that: Personnel providing support to families should have available from their health board, for supply to parents, a dossier of printed material containing information on the disability; the name, address and telephone number of appropriate community care staff, and of the local service for intellectually disabled persons together with details of entitlements. (Review Group on Mental Handicap Services, 1990, p. 21) The report of ‘The Commission on the Status of People with Disabilities’ published in 1996, entitled A Strategy for Equality,is a comprehensive equality strategy for people with disabilities in Ireland. It deals specifically with the process of disclosure of disability in several recommendations, amongst which is its assertion that ‘the right to hear one’s diagnosis in a sensitive and humane manner should be recognised’ (Recommendation 131). This report echoes the call of Needs and Abilities (1990) for information services to be provided for families, including at the ante-natal phase, and it identified significant gaps in coordination of services providing assessment and referral. It recommended the introduction of a hospital based key-worker to facilitate communication between hospital, staff and families. A progress report on the implementation of this strategy, entitled Towards Equal Citizenship (1999) found that many of the recommendations were under consideration, or had not been undertaken due to resource issues. Towards an Independent Future (1996), followed closely after the publication of A Strategy for Equality, and built on the recommendations contained in that report as they affect health services for people with physical and sensory disability. In relation to the diagnosis of disability, its’ recommendations included the establishment of regional child assessment teams, voluntary help lines, peer counselling and other family support services as an integral part of the community services available to people with disabilities. The most recent health strategy published by the Department of Health and Children, entitled Quality and Fairness (2001), outlined equity, people-centeredness, quality, and accountability as being key principles of the health strategy. As with the previous strategy documents referenced, Quality and Fairness recognises the urgent need for the development of enhanced information provision; 37 2. LITERATURE REVIEW

Informing Families Consultation and Research Report To meet the objectives of the Health Strategy and to deliver the quality of health services that people require, information is needed which is appropriate, comprehensive, high-quality, available, accessible and timely. Good information systems based on fast, efficient flows of shared information are, therefore, essential to the success of the Strategy. (p.131) In order to uphold the principle of equity when informing families of their child’s disability, access will be required where necessary to translation and sign-language services, and there should be provision of appropriate information for groups requiring additional support. These may include those with literacy or language needs, visual or hearing impairments, or parents who themselves may have intellectual disabilities (p.78). In order to develop more person-centred services Quality and Fairness indicates that services must be organised, located and accessed in a way that emphasises the needs and preferences of those using the service, and that health and social systems must have the capacity to accommodate service-user preferences. The strategy emphasises the need for co-ordination between services for the benefit of the service user; The health system in Ireland encompasses both health and personal social services and these must be accessible and well co-ordinated. (p.16) Under Action 51 of the strategy, in order to place the person at the centre of the delivery of care, there should be ‘greater communication and liaison between individual clinicians within services and across services…’ and the appointment of key workers in the context of care planning. The strategy includes children with disabilities as one of the groups most urgently requiring the provision of key workers. To achieve greater quality assurance, the report sets goals to develop standards, protocols, and guidelines/models of best practice and to disseminate these across the system, and states that there should be increased evaluation and accreditation of initiatives, with an evidence-based approach to decision making. Accountability will be enhanced, according to the strategy, by increasing the involvement of consumers of the service as partners in planning and evaluation. As a quality initiative which is based on national and international evidence; which relies on an individualised approach; and is dependent on providing clear information on access to services and entitlements for families, the provision of best practice guidelines for informing families of their child’s disability is fully in line with the principles expressed in Quality and Fairness. All of the above policies, and the present guidelines produced under the Informing Families Project, should be viewed in the context of the National Disability Strategy (2005-2009) and the current Health Service Executive Transformation Programme. An important aspect of this Strategy is the Disability Act 2005, and its provision for an independent assessment of need process for all persons with a disability. The practical application of the assessments will have an impact on where and when some families will first hear the news of a disability, or have a disability confirmed, and will need to be carefully examined when implementing guidelines for professionals giving the news.The statutory provision of an assessment of need process for children under the age of five took effect on 1 June 2007. The recruitment of Assessment Officers for this purpose had taken place at the time of going to print however it was too early to evaluate the workings of the new process on the ground. The Health Information Quality Authority has issued Standards for the Assessment of Need (HIQA, 2007). These standards set out requirements that the assessment must be person-centred and ensure that the person is appreciated and respected as an individual. In addition, the standards require that the person (or in this case the parent(s) of the child who is being assessed) is respected for their knowledge, and the experience that they bring to the process. This will be a particularly important standard for addressing the needs of parents whose children have an evolving diagnosis, as expressed in the literature above. The standards also address the need for co-ordination when they state in Standard 5.2: Where a number of people are involved in the Assessment of Need they work in a co-ordinated way to achieve a comprehensive Assessment of Need report (p.19). In addition to the Disability Act, 2005, the National Disability Strategy provides a second legislative instrument for the assessment of a child’s educational needs; the Education for Persons with Special Educational Needs Act (EPSEN), 2004. The Act ensures that persons with special educational needs can be educated where possible in an inclusive environment, that they have the same rights to education as persons who do not have special educational needs and that such persons are equipped by the education system with the skills they need to participate in society and live independent and fulfilled lives. The Act introduces an assessment and Individual Education Plan for Children (IEP) identified with special education needs. 38

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