Caring for a medically fragile child in Ireland: An open letter to the Irish Government


Ignored. Forgotten. Conveniently overlooked. Set aside. Dismissed. Considered unimportant. Call it what you will, families with children who are disabled and/or have life-limiting conditions were, for the most part, ignored in the 2017 Budget announced here in Ireland on 11 October 2016.

There was a crumb given after parents had to fight tooth and nail – that of medical cards to children who currently receive DCA (Domiciliary Care Allowance) payments – and for those families it does indeed come as a welcomed relief. Having said that, it was something that should have been done from the very start, so for it to finally be done now is a bit anti-climatic. It is still only a nugget given to try and satisfy a famine-like situation.

Families with severely disabled, medically fragile children are struggling financially.

We have many expenses beyond that of the typical family, yet in most cases one of the parents (that is, if not a single parent) is forced to remain home to be a full time carer to the child. Yes, yes, there was a whopping (rolls eyes) €5 increase in the weekly Carer’s Allowance. I heard the news. I watched hours of the Budget 2017 report live on RTE1 throughout the day. And no, I wasn’t impressed. First of all, I personally don’t receive the Carer’s Allowance…Despite working 24/7 doing nursing-level duties, often without any break for many hours on end…Despite having to spend hundreds of euros each month in extraordinary expenses…Despite having to give up my Master’s level educated career because I can’t hold a professional job with all the hours and days I have to miss because I am caring for my son…Despite the fact that carers like myself save this government BILLIONS each year by doing all the care for free rather than the government protecting the most vulnerable and fragile in our society by providing covered nursing care as is desperately needed. Despite all of that, the Carer’s Allowance is still means tested.

Why means test the Carer’s Allowance when the amount paid (€209 per week) barely even touches the value of the work being done 24/7 by the carer, especially considering all of the extra expenses of a special needs household?

For most typical families nowadays, both parents need to work to make ends meet. So what happens when your’s is not a typical family and one parent is unable to work because there is no full time care for their disabled child other than a parent? I will tell you what happens. A family with extraordinary expenses is then required to try and survive on one income, and like mine, with no Carer’s Allowance. Less income. More expenses.

And to add insult to injury, the Home Benefits Package is attached to the Carer’s Allowance, so if you don’t get Carer’s, you don’t get that package – no free TV license despite the fact that is the only thing my little boy can “do” is watch TV, and no help with heating bills despite the fact that his fragile, medically-complex body cannot regulate temperature correctly.

Why means test the Home Benefits Package when it is to benefit the disabled person? 

We were left yesterday, after hearing the budget, wondering why a first time home buyer will get the assistance of a generous €20,000 rebate when they buy a brand new home worth up to the astronomical value of €600,000, when clearly if they can afford that type of mortgage they don’t need any assistance! Did you know it costs us tens of thousands of euros to modify our homes so that they are accessible? Forget the €600,000 brand new luxury home, we can’t even afford to make our current one suitable for a disabled child!

We were left yesterday, after hearing the budget, wondering how those of us that actually do qualify for the Carer’s Allowance will spend the extra €5 a week. Ok, we aren’t really wondering about that because we won’t even notice the extra fiver. But did you know it costs us more than that just to park in a hospital car park for a few hours, which we usually have to do on a weekly basis?

We were left yesterday, after hearing the budget, wondering why you TDs got such a healthy raise in your salaries, when you get summers and holidays off, travel and meals and drinks and rent and the list goes on and on, all the paid for expenses. Did you know that when we sit in the hospital room day and night with our very sick children, we go broke just having to pay for our meals in the hospital cafe? Did you know many of us gave up our careers, our incomes, because there was no other option to care for our fragile children? Did you know that we don’t get a salary or summers off or travel or meals or drinks or rent or any expenses paid for with the all-important job that we do? Did you know any of this?

And lastly, I respectfully ask, did you know that although we are struggling in so many ways, financially and otherwise, on this very challenging journey, that we we are also a strong, cohesive, determined and unified group of very special parents tens of thousands in number across this great island of ours?

We were left yesterday, after hearing the budget, wondering why our precious, beautiful, all-to-innocent of angels have once again been Ignored. Forgotten. Conveniently overlooked. Set aside. Dismissed. Considered unimportant. Call it what you will.

Did you  know that how we treat them
is a direct reflection of our humanity…
or is it the lack of humanity?





7 thoughts on “Caring for a medically fragile child in Ireland: An open letter to the Irish Government

  1. So well put. Heartbreaking in context, what we do gladly and lovingly for our children over and above the average family. We do it because we have to. But we are not completely indestructible. the extra medical care needed for carers I feel is underestimated. The counselling, medical expenses and number of conditions carers end up having is no coincidence. The extra expenses and stressors placed onto the household or parent cannot be ignored but repeatedly is ignored, and a fiver is all we can hope for in this Budget. The situation for families right across the country is much worse after the recessiona aand inequality has risen and continues to do so. Things do not seem to be “recovering” for us. The lack of interventions due to health service waiting lists exacerbates some conditions. The lack of income into the house due to a fulltime carer giving up their job out of sheer necessity is not factored in. And cost of living combined with extra costs for special needs related expenses are all important for Govt to factor in, surely?

  2. Christine Harmes

    Well done. There are so many families who do not get carer’s allowance. We are simular to you and I have written to TD’s about it. If anyone has to give up their job to care for their special needs child then you should automatically get Carers. It’s a no brained. Well written.

  3. Lorraine woods

    You wrote that so well, I wish I could write like that to express my feelings , but I don’t have to you have taken the words right out of my mouth. I do receive carers allowance , but even that doesn’t cover it, another financial cost is the cost of getting a qualified sitter to mind our children even for afew hours , can cost hundreds. Loved you piece .

  4. Jenn

    Brilliantly written. If every person and child with a disability in Ireland had a voice together …. it would be a roar. It’s a pity that each disability has its ‘own” representative organisation, all busy collecting money to continue their own existence instead of helping those they “represent” and lobbying government with squeaks instead of a roar!

    • Jenn, I am working on this as we speak. It will be an advocacy group encompassing all issues for our special needs families and won’t be seaking funds to do the job. All we will be looking for is voices to join in collectively to protect all of our families. Simple as. 🙂

  5. Theresa Olohan

    Totally agree there is great enquity in the Carers Allowance so many of us doing the Caring are locked out of it ,and are doing a wonderful job saving the state billions over years .

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