Questions on rights for family carers and their disabled loved ones in Ireland

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Does a family carer have any rights in Ireland? The right to respite? The right to proper, appropriate support? The right to live a life not in constant pain and despair? The right to a career? The right to time away from caring work just as other workers have the right to?

Another question: Does their disabled, young-adult child have the right to progress in their life with the continued assistance by the State and move into an independent living setting outside of the family home, fully supportive of their individual level of disability needs, when they turn 18 years of age?

Answer: No, it seems not, to both questions. Forget the UNCRPD (the UN Convention on the Rights of Persons with Disabilities) rights as it doesn’t seem to hold much weight in Ireland.

Now I ask, WHY NOT?

Well, you see, Ireland refuses to sign the Optional Protocol. This is the protocol (agreement) which gives the UNCRPD its teeth. It is what enables a person to file a claim that their rights under the UNCRPD are not being upheld.

Again I ask yet another question…WHY does Ireland refuse to sign up to the Optional Protocol?

In a nutshell, and in my opinion, it is because Ireland has not assured it has the proper services in place to fully, equitably, and suitably support disabled people in our society.

Here is an excerpt from an Irish Examiner article dated 30 May 2021: “Markus Schefer, a member of the UN Committee on the Convention on the Rights of Persons with Disabilities (CRPD), said it suggests Ireland is not confident or comfortable enough to open itself up to international scrutiny.” I would encourage you all to read that article hyper-linked above. The fact that “Ireland signed the CRPD in 2007 but the international law, which requires the state to work towards providing full and equal rights to people with disabilities, wasn’t ratified until 2018” says it all.

I don’t have the answers, but I am looking for them as I seek support. Since July, I have been pleading with Brendan Bjorn’s disability team for proper supports but to no avail. I have visited the two residential disability children’s respite centres in County Wexford and neither was suitable for his profound, very complex medical needs. His team should have known this and not wasted anyone’s time and energy in requiring me to view these centres. A quick review on their part of what the centres have and don’t have would have done the trick in literally 60 seconds…no overhead hoists in either centre. End of. Not suitable. And they then could have immediately gone forward in looking outside of the county.

But…no…this is Ireland where it took 11 long years to ratify the UNCRP and where they still refuse to sign the Optional Protocol to give disabled people the legal mechanism to claim their rights are not being met.

And people wonder why Irish carers and the disabled people in our society
so very often despair at the state of things?

Dear Irish government, It is way beyond time for reforms in the disability sector here. Way beyond time.

How many years more? Caring, the pandemic, and life

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I don’t want to be in the press or on social media anymore. I don’t want to be publicly pleading for services, human rights, treatments for my son, awareness of this or that…or for anything, to be honest. But, I know the power of the press and social media, so until I am finally done being a carer, I’ll have to remain.

But to be clear, I don’t want to be. In fact, there are a lot of things I don’t want to do anymore. And there are a lot of things I do want to do, but can’t, because I am trapped in this role I can no longer tolerate…the role which I have no choice but to do, it seems, despite the chronic pain of arthritis and degenerative discs; despite the high cholesterol and being overweight, both which can lead to a terrible outcome; despite the depression and anxiety and related medication that I wish I could stop.

I’ve spent the past 17 years in the public ‘limelight’, via national and local press, both in the US and in Ireland, advocating for all of the above concerns, all related to my son’s numerous conditions and my role as his carer. I’ve no interest in it anymore. Zero. I’ve done my bit, so to speak.

When my caring role is done, I simply want to fade away from any press or social media, and just live out a quiet, simple life focused on what is before me. Watch my younger son grow into the man he can become and leave the nest to soar on his own. Maybe finish those books I began writing ages ago. Maybe take those long dreamt of trips on my bucket list. Maybe spend my latter years quietly soaking up some peace and beauty tucked away on a spot of land far away from what life is like presently.

Tears roll down my face as I type that, thinking of what could be and terrified it may never be.

The pandemic has tipped me over the edge of that caring abyss which many of us as carers try to keep our balance on every single day.

I’ve been a lone parent carer to my beloved firstborn son, Brendan Bjorn, for nearly two decades. And when I look ahead for my own life, it’s about that same amount of time I figure I have left in good years. About 20 years. I’ll be 56 next month. My mother died when she was 60. Her mother died when she was 67. And yes, that scares the absolute crap out of me. That, and knowing I have a young 13 year old son who needs more from me now than ever before. I must take care of myself now, with my own numerous health conditions, or I likely won’t be there for him for very long.

So, now what?

Four months ago I wrote to Brendan Bjorn’s disability team telling them I was breaking and I asked for what I needed. I was met with a very matter-of-fact letter stating there are no services presently – talk of waitlists, talk of future reviews. As I tend to do, I didn’t let it drop and replied with more direct questions asking why there were no available services and reiterated my plea for help. It went nowhere. Nowhere, that is, until the social worker came to see me. The result was a wonderful 5-page letter supporting all I had requested. As well, there were letters of support from his school nurses and principal and from his paediatrician.

Those that see what I do daily understand and don’t know how I do it.
Those sitting behind their desks can’t even begin to imagine.

Again, now what? I don’t know actually. More waiting. More breaking down. More worry about what happens if (or more accurately, when) I am to the point of not being able to keep going on caring. The point of where I am broken beyond repair.

Why are carers be left to get to this point?

Because those with the power to reform needed services don’t care enough to do so. There isn’t the political will. Simple as.

photo from 2017