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

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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?

 

 

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Walking the tightrope without any net

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Parents in my shoes tend to primarily focus on our child with a life-limiting illness. The care required consumes our time, energy, thoughts and emotions to a great extent. Those of us who have been on this journey for some time can talk about the day when our child will gain his or her angel wings. For example, my angel Brendan Bjorn turned 12 years old just a few days ago. I have made plans for the day I will lose him. I know what I want done. And I can nearly talk about it now without crying each time. But there is something that many of us parents DON’T talk about.

What happens if I die first?

Look, it could happen. I will be turning 51 years old (gulp!) in December. I’ve got rheumatoid and osteoarthritis. I’ve got degenerative discs in my lower back thanks to many years of lifting my precious son who is completely disabled and unable to assist in any way. I need surgery on my left foot but can’t take the 3 months recovery time because of the care I need to give my son. I am the first to admit I am out of shape now, cholesterol and blood pressure letting me know just how out of shape. And, like many of us, I contend with depression and anxiety (go figure).

Back when I lived in America and Brendan was still very young, I was working in my professional career field. But, in order for him to receive medical coverage from the government which covered much needed equipment and services that my private insurance wouldn’t cover, I was required to only have a meagre $2,000 of liquid assets. I had to cash in all of my retirement funds. There was no longer a safety net. No longer security for my future. I would have to roll the dice in order to get him all that he needed.

Today, I am unable to work because I care for Brendan full time. My career is so many years on hold that at this point I can’t even imagine it being resurrected without divine intervention. I am now dependent upon my partner financially – a fact that anyone who knows me well, knows I absolutely abhor being dependent in this manner!! I have always been self-reliant – up until now.

So, back to my question. What happens if I die? And what happens if my partner dies? I’ve been thinking of this a lot lately because of my recent newly discovered health issues. As well, my partner fell seriously ill in August. This is a reality we all must look at, but especially when a child with severe disabilities and life limiting illness needs to be considered.

My big question? Who would care for my son if I die?

My answer: I honestly don’t know.

It would be a “big ask” of anyone. Plus, I have stipulations such as I absolutely do not want my 2 sons to be split up, so whoever would take Brendan would also need to take my other son. Of course my partner is first on my list, but as all of us parents know when we complete our will, we have to also plan for the worst case scenario of if both parents pass away together. (My God, this is a hard topic!) And this is where I am stuck. There is no one. Let that soak in as you read. Designating a guardian for your healthy child in the event of your passing is one thing. Hard enough, to be sure. But finding someone to take both your healthy child AND your severely disabled child, well…you get the picture.

Insert here a saying that goes around our special needs community for years:
“May I live at least one day longer than my child with special needs.”

Why do we say that? Because of what I am writing here. Because in so many ways, we don’t have a net to catch us if we fall. This fact is ever present in our minds, usually hidden in the back filed away among other thoughts too hard to look at too often. But it is there. And the weight of it is damn heavy.

Can you imagine not knowing what would happen to your children if something happened to you? Worse yet, can you imagine your fragile child being sent to some State run residential home for the disabled where the care would likely be substandard and definitely without the love you shower daily on your precious one? And what of us who are financially dependent on our partner, but have absolutely no financial security net in place if God forbid something was to happen to them? We are again left walking that tightrope without any net.

It is a tremendously worrisome place to be.

 

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