Monday, December 11, 2017


The little bird with the broken wing

On Saturday the 15th of September, 2012, an event took place in a large midlands town which would as it concluded, turn an eye on the role and pressures of the carer in assisting the severely disabled.

The Shadow of an Archaic System

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.

The social wellbeing of children of parents with intellectual disability

Research with parents with intellectual disability This paper provides a summary of current evidence about the lives of children of parents with intellectual disability. Typically, knowledge about these families reflects a research focus on parenting by mothers who are known to social services.

Parenting with Intellectual Disability: what does it take to make it work?

To form a family of ones own In the online video, We are a Family (IDRS 2012), the interviewer asks Charole, “So when did you decide you wanted to be a mum?” Without hesitation she responds, “Forever! As long as I can remember I have wanted to be a mum.”

Home Sharing in Intellectual Disability Services in Ireland

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...

The fight for residential accommodation for the disabled – My story

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.

Fully accessible facilities at MDI’s ‘Home from Home’

Accessible facilities 1
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.

End-of-life: What are the 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.

‘Decongregated Settings’ – Hailed as progress, but seems to forget those with complex medical needs

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.


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...