The last time I got in-home nursing respite was June 2017. We lived in a different county at that time. I also received in-home nursing respite in another county. Here in County Wexford, though, it has been refused. As a full time, lone parent carer to a profoundly disabled teenager with complex medical needs who is also very fragile, having no nursing assistance, no in-home nursing respite, is nothing short of negligence by a government who professes to care for society’s vulnerable. Disability Rights and the Rights of the Child are apparently non-existent, hollow pieces of legislation in Ireland.

The profoundly disabled children and adults in Ireland – and indeed those of us who are their voices as their carers – have been swept under the rug and forgotten about…or is it, ignored? 

This cannot be allowed to continue. 

I have 2 sons. I am now in a position where I have to fight for proper services and supports for both of them as my youngest son has been referred for an OT (occupational therapy) assessment which has a wait list of over 2 years in County Wexford. OVER TWO YEARS FOR AN ASSESSMENT. This is absolutely neglecting the needs of a child with a possible disability that will impact his education, and as he’s entering secondary school this Autumn, I’ve decided to pay the €450 for a private assessment for him. I don’t have that kind of money as a full time carer relegated to existing on a fairly meager amount social welfare, but I’ll find it…somehow. I have to.

And I’ll keep fighting to change and improve the system, the supports, and even the laws if need be. For my sons – both of them – and for all of the other families in Ireland who are in this situation crying themselves to sleep at night before having to get up an hour later to do more caring.

At this point, I’m just hoping I don’t collapse before I see those goals met…trying to survive while caring 24/7 but getting zero in-home nursing assistance/respite and fighting battles on many fronts.