I’M NOT SURE what to think of any of it. The upcoming referendum is definitely a head scratcher. Like many others, I don’t know how I would vote on the 8 March. At the moment, it certainly sounds like many will vote no, or not vote at all.
I am following the debates about the referendum on the radio and online, wanting to know the result. What I would vote myself is a moot point. I can’t vote in referendums, only in local and European elections.
I’ve lived in Ireland for nearly 20 years, and am a carer for eight of these years. My children are Irish and so is my other half. What they need and want should matter. What our family needs is important.
Overall, this referendum is a missed opportunity. A missed opportunity to get the wording right and to expressly support carers. Not just with lip service and acknowledgement but with tangible and practical support and services for carers and their loved ones.
Talking to other carers, I am fairly certain that the majority will vote “No” on the Care Amendment.
Why? Well, I think the government can answer that without me writing about it, but I will let them know anyway.
The wording “[...] strive to support such provision” in the amendment is at best vague waffle, and at worst an insult to carers. It is an active attempt to evade responsibility, legally speaking and morally, towards carers and their families.
Language matters. Any solicitor and any legal body, such as the Free Legal Advice Centre (FLAC) will tell you this. Eilis Barry, the FLAC Chief Executive has voiced very valid concerns that the ‘care’ amendment as drafted will not create a meaningful obligation on the State to support childcare, elder care and independent living for people with disabilities.
FLAC and the Irish Council for Civil Liberties (ICCL) looked at the implications of the care amendment and its wording and warned that there will be no clear improvement as a result for carers and their families.
While I have no legal expertise, I have experience fighting for my children’s rights to an Assessment of Needs in the courts. The first thought I had after reading what the government ‘strives’ to do was that this wording was chosen intentionally to prevent future legal actions for non-provision of services and supports. Or, at minimum, prevent any real-life accountability.
Carers have a litany of complaints about the services and so-called supports that the government, the HSE, the National Council for Special Education (NCSE) and many other institutions involved, “strive” to provide in theory but often don’t deliver in reality.
So you must forgive us if we are not overly ecstatic about this care amendment and view it with mistrust.
It’s great to be acknowledged, but as the nurses during the pandemic will tell you, acknowledgement, lovely prose and speeches, even clapping is only worth so much.
Where are the therapies promised for our loved ones who have care needs? Where is the access to urgent respite when families are at crisis point and need practical support so they can take a minute for themselves? So they don’t buckle under the pressure, with the endless sleepless nights and the worry for their loved ones’ wellbeing and future.
Where are the suitable school places for EVERY child who needs it? The children who need to learn skills of independence and socialise in their own ways, so they can fulfil their potential, so their parents and guardians stop having sleepless nights about what will happen to them once they are no longer around.
It’s simply not good enough just to “strive”. We have had enough of flowery, aspirational and appeasing language. Words are cheap.
That said, I personally am so desperate for any scraps of support and change that I would even consider voting yes.
Why? Because sometimes something is better than nothing. Because at least the referendum has managed to bring our existence into the spotlight again. And at times political change can be incremental rather than immediate. But that’s just my eternal, and somewhat delusional belief in “hope is the thing with feathers”.
Maybe I shouldn’t fool myself into hoping that we and the people we care for will eventually be supported in the way we should be. Many of my peers would tell me exactly that. “Who are you kidding? They always promise things and then leave us hanging, again and again.”, a friend of mine told me recently. She is not wrong.
We were promised timely assessments of our children. The waiting lists for Assessments of Needs are currently endless. Without this assessment, children with additional needs don’t get any access to speech therapy or occupational therapy through the public system. Or access to a spot in a special class or school. Some positive changes have allowed the recognition of privately funded diagnoses now, but it’s not enough.
I could bore you with more examples of the promises to carers that successive governments have not kept. This is not a victimless crime. Families struggle under the pressure, and some even fall apart. We are expected to quietly put up and shut up, and carry on with the status quo.
No longer.
I can’t speak for anybody but myself, and I am an outlier in thinking a yes vote may, possibly, potentially help in the long term. Other carers will disagree, and probably rightly so.
But no matter what our opinions, this is what I would like to say to the over 500,000+ carers (one in every eight adults) in Ireland, and anybody that supports us: vote for what you think will bring change.
I am unsure myself what that is, but we shouldn’t suffer behind closed doors. Voice your concerns, scream your discontent from the rooftops. Maybe voting can make a difference.
Even if nothing changes, and I really hope it does, sharing our struggles is a powerful weapon. Use it.
Rita B. Wray is a carer and writer.
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