Friday, April 28, 2017
Frontline Issue 95
frontline 95


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Sarah Lennon, Inclusion Ireland, writes that making a will is always important—even more so for the parents of those with an Intellectual Disability

Planning for the future can be a very difficult and worrying thing to do. Planning for a future after you have gone can be one of the most difficult and upsetting tasks of all. It is no surprise that many people delay thinking about making a will, but delaying and ultimately failing to make a will can have serious consequences for your family, especially if you have a family member with an intellectual disability...

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Máiríde Woods shares her experience of losing her daughter, Aoife

It is hard to write about grief and loss because they are private and individual experiences, even in a world where most things are public. Occasionally grief becomes public, as in the reactions to Princess Diana’s death which ended up expressing people’s sorrow at their own losses...

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Linda McEnhill explains that a good LSB will offer the essential elements of communication, information giving, identity building and attention giving to those with an intellectual disability.

Background: Described by Fahlberg as ‘ account of a child’s [person’s] life in words, pictures, photographs and documents, made by the child [person] with the help of a trusted friend [helper]’ (Fahlberg 2012), life story books (LSBs) originated in adoption and fostering services as a tool to build the child’s sense of personal identity, and thereby to support their ability to deal with crisis and change...

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John McEvoy on the need to prepare and support people with an ID who have been bereaved.

ealing with the death of someone close is a difficult and painful event. For individuals with an intellectual disability, personal loss brings the same distressing emotional reactions felt by relatives and friends (Dodd and Guerin 2009; Gilrane-McGarry and Taggart 2007). However, there is a need to prepare and support people with ID who have been bereaved...

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Sisters Kathleen O’Connor and Ann Devine in conversation with Kathy O’Grady

The Pastoral Support Service has grown to become an integral part of the support service that is hallmarked by the essence of inclusion in the ultimate recognition of the importance of spirituality in the lives of all stakeholders, especially for staff in their daily work with people with intellectual disability, the individual families and broader society...

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Stuart Wark and Michele Wiese write that as the life expectancy of individuals with an intellectual disability has risen there is an increased likelihood of experiencing the death of a significant other such as a parent, friend or housemate

Historically, there has been a perception that many individuals with an intellectual disability may not have had the necessary understanding of social relationships to feel grief or the capacity to comprehend loss associated with the death of a family member or friend (Speece and Brent 1984). Much of this argument has been based upon the perception that people with an intellectual disability were unable to establish the close social and personal relationships with other people that underpin later feelings of grief following a death (McDanial 1989)...

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Stuart Todd, Reader in Intellectual Disability Research, University of South Wales, on the shifting research focus from death to how dying is communicated to those with an ID.

For more than twenty years, the aftermath of the death of a loved one in the lives of people with intellectual disabilities was starkly revealed to be an issue sidestepped awkwardly by services and family relatives. Of course, previously to that it was considered that people with intellectual disabilities were not emotionally capable of feeling grief. However, once there was recognition that people with intellectual disabilities had emotional selves, anxieties arose about how best to manage those emotions.

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Owen Doody, Department of Nursing and Midwifery, University of Limerick, writes that every individual’s experience of grief is unique—including those with an intellectual disability.

One of the most significant trends seen in recent years has been the increasing longevity of people with intellectual disability (Doody et al. 2013). Advances in medical and neonatal care, along with deinstitutionalisation, have increased life expectancy for most individuals with intellectual disability...

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Nancy Morgan gives an overview of how those with an intellectual disability experience and manifest grief.

All of us encounter grief during our lives. Queen Elizabeth, speaking to relatives of people killed in the 9/11 attacks said ‘Grief is the price we pay for love.’ The death of a loved one can cause intense grief and it is believed to be amongst the most painful of all human experiences. John Bowlby (1980), writing on attachment and loss, said that ‘without attachment there can be no sense of grief.’...

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Bob McCormack on the Care & Support of Residents in Designated Centres for Persons (Children & Adults) with Disabilities Regulations.

On 1 November last year, the Minister for Health signed the Care & Support of Residents in Designated Centres for Persons (Children & Adults) with Disabilities Regulations into law (Statutory Instrument No.366 of 2013). This enabled HIQA inspectors to call unannounced at any time to a house or institution where individuals with a disability lived and were supported by a service provider receiving public funding—unless they had a ‘real and meaningful’ individual tenancy arrangement...