Monday, September 25, 2017
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The process of organising and hosting a remembrance service for people with an intellectual disability who have died – Philie Sheehan’s project details one of the significant aspects of bereavement care for families of people with disabilities.

The birth of a child is the beginning of a process of change for every family. New roles and routines are established, relationships altered, new and varied friendships formed and experiences in the wider community take on a different perspective. The birth of a child with intellectual disability brings all of these changes along with the added dimension of a link and relationship with a service provider.

How to avoid loneliness in older people with an Intellectual Disability, by Andrew Wormald

What are the circumstances in a person’s life that best help them avoid or overcome loneliness? For some people as they age loneliness is an ever-present risk. Mounting losses to social resources and deterioration in health increase the risk of experiencing loneliness.

Sarah Corcoran has recently secured satisfactory accommodation for her brother John now life has changed for them, but only after a worrying and protracted succession of meetings, applications and representations. She details this frustrating process for Frontline Ireland…

Our story begins in June 2012. At the time, I was 25 years old and my brother John was 22 years old. We lost our mother three years previously and now we had just lost our father. Our father’s death was sudden and we were completely unprepared. My brother John has an intellectual disability and had been living in the family home with my father as his carer.

Niamh McEnerney, member of the Dublin Mid Leinster (DML) End-of-Life Sub-Group, shares her findings from her research, which asked the question: What are the end-of-life needs of Adults with Intellectual Disability?

Ireland’s independent health safety, quality and accountability regulatory body, The Health Information & Quality Authority (HIQA) published the National Standards for Residential Services for Children and Adults with Disabilities in 2013. Within these standards, the need for appropriate end-of-life care for adults with Intellectual Disability (ID) was highlighted.

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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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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 ‘...an 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...