Friday, April 28, 2017
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In an Ireland that twelve months ago voted for marriage equality, there is still a category of persons for whom having a relationship is not legally clear. For people with intellectual disabilities, beside the usual challenges of meeting a significant other, there is an onerous legal shadow hanging over them in the shape of an archaic system and a more recent law that is nonetheless just as restrictive and prohibitive.

Donal Fitzsimons outlines the implementation and history of Home Sharing initiatives in Ireland over the past 30 years, and identifies the challenges ahead…

Home Sharing in intellectual disability services has existed in Ireland for the last thirty years as an alternative option to the traditional residential and respite care models of support offered to people with intellectual disability and their families. The last ten years has seen further developments in Home Sharing...

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.

Cormac Cahill of Inclusion Ireland shows us a little of what can be achieved in purpose-built, accessible accommodation for people with physical disabilities.

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Muscular Dystrophy Ireland (MDI) is a voluntary organisation that provides information and support to people in Ireland with muscular dystrophy and allied neuromuscular conditions, and their families, through a range of support services.

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.

Jeanette McCallion welcomes movement towards a community-based social care model, but cautions that complex medical needs among people with intellectual disability still require medical services, previously provided in congregated settings, to be maintained and improved in this environment.

Jeanette and Cliona

In December last I watched RTE’s Primetime Investigates on Áras Attracta, Bungalow 3. Knowing in advance that the footage would be bad, I debated with myself whether I should make myself watch it or not. The main reason for my unease is that my seventeen year old sister Cliona has profound ID as well as an extreme epilepsy syndrome that no seizure drug has ever been able to influence.

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Roy McConkey, Emeritus Professor of Developmental Disabilities, University of Ulster, argues that service systems have to forge new partnerships with families so that the rights of people with intellectual disabilities to a fulfilled life are achieved.

Throughout the world, people with intellectual disabilities are dependent on family carers. This is especially so in childhood, but in most countries their care-giving extends well into adulthood and often for a lifetime. What is remarkable is the exemplary care that most families provide to their much-loved relatives despite having little prior experience of disability or any formal training. They have to be available 24/7, often with few breaks and irrespective of the toil it takes on their emotional well-being and financial resources. They are the unsung heroes in creating better lives for Irish people with disabilities and yet I fear that their enormous contribution is taken for granted as health and social care services become more professionalised...