THIS WEEK, WE asked carers to get in touch and share their thoughts and opinions on the upcoming care referendum.
The vote – one of two that will be taking place on 8 March – proposes to give a broader recognition of family care, according to the government.
It would delete Article 41.2 from the Constitution and insert an Article 42B with the following wording:
“The State recognises that the provision of care, by members of a family to one another by reason of the bonds that exist among them, gives to Society a support without which the common good cannot be achieved, and shall strive to support such provision.”
A number of political parties and civil society groups have raised concerns about the wording of the referendum, specifically around the ambiguity of the phrase ‘strive to support’.
There have also been questions over why wording proposed by the Citizens’ Assembly on Gender Equality, which made several recommendations on the constitutional changes, was not used.
In its final report, published in June 2021, the Citizens’ Assembly proposed deleting Article 41.2 of the Constitution and replacing it with non-gender-specific language that obliges the State “to take reasonable measures to support care within the home and wider community”.
Civil society organisations such as Family Carers Ireland have said that they will be campaigning for a Yes vote in the care referendum, saying that it provides a chance to formally acknowledge the contributions of family carers and “paves the way for more robust support”.
We asked carers to get in touch with their opinions on the referendum and how they will be voting on 8 March.
Most of the carers who responded felt that the wording used in Article 42B was too weak.
Anonymous, a carer for their ten-year-old daughter, who has cerebral palsy
“While I’m concerned the wording does not go far enough to hold the State accountable for my daughter’s care, I’m voting yes for fear another referendum won’t happen. The current wording needs to change.”
Aidan Larkin (62), Galway, a full-time carer for his wife who has a progressive neurological condition
“There are a few issues I have with the wording. The first is the use of the word ‘strive’.
This is such a weak concept, and if past experience is anything to go by, meaningless.
“We have a great history of using words like ‘strive’, ‘may’ ‘within available resources’ in all of our policies and legislative language.”
He was also critical of the fact that the wording bases the provision of care on the construct of family, saying that “the provision of care and support ‘for the common good’ can be extended to friends and neighbours”.
Aidan said he was unsure of how he was going to vote on 8 March.
“If I vote yes, I agree to the shortcomings of this wording and if I vote no based on my disagreement of the wording, I – in effect – agree with the current wording, which I do not. So I will have a dilemma. Do I spoil my vote as a protest?”
John Stapleton (75), Clare, a carer for his wife
“Strive to support is too weak and means no change.”
Anonymous, Limerick, a carer for their two children
“As a parent of two autistic children, who also happen to be my two favourite people, I believe the insertion of Article 42B into the constitution is a step in the right direction.
“But as usual with policy creation and law-making, the devil is in the detail. The intentional wording ‘strive to support’ is a start, but doesn’t go far enough.
“The government knows if they chose more express wording, such as “shall support such provision”, it will leave them open for criticism “for not meeting such targets in the future, or possibly even legal action.
Unpaid family carers have a world of experience with the services that the government, the HSE and the NCSE “strive” to deliver in theory, but often fail to provide in practice.
They said that the only way to hold institutions to account beyond the next election is by using language that will make it mandatory to provide support to carers.
“Despite the flawed wording, I encourage people to vote yes on the care amendment since having this in the constitution at least acknowledges the crucial role we play for those we care for and the wider community.”
Anonymous, a carer for their 20-year-old son who has autism and a mild intellectual disability
“The Yes campaign is asking me to make like a turkey and vote for Christmas and then trust the process.
“The process of engaging with the HSE and other state bodies to access care and support is, as any carer will tell you, nothing short of harrowing.
“It involves Olympic-level skills in bare-knuckle bureaucrat boxing, it demands an enormous cognitive load and often results in no support, leaving us exhausted, drained and without a marble to our names.
They described several “horror stories” that she had experienced when trying to access support for her son, “like the time I complained about my son’s lack of access to speech therapy and the local Primary Care manager wrote to me to remind me how much my son had already cost them”.
They said: “I could go on and I’m sure many carers could tell you equally mind-numbing, soul-crushing stories. I’m not special.
Suffice to say that bitter (and boy do I mean bitter) experience has taught me never to trust the process.
“For Roderic O’Gorman to gushingly announce that this referendum will allow me to sue over this kind of mess is just insulting.
“Please support carers. We do not want charity. We want rights.”
Margaret O’Brien, Kilkenny, a carer for her partner and a helper to her son, who is a full-time carer for her grandson
“As a lifelong feminist, I canvassed widely for the Marriage Equality and Right To Choose referendums. I expected to be canvassing in favour of this one too and am heartbroken that I find myself voting no to 42B,” she said.
The wording not only disappoints, it terrifies me.
It deliberately obliges NOTHING from the State. It deliberately assigns the locus of care to the home and the duty of care to the family. It deliberately allows the HSE and other Departments to use the Article as an excuse to deny.
“If I die before my partner, it leaves my partner with no right to care outside the family. It leaves my grandson and his family with no rights to care or to services. The government were given other words by Flac and the Citizens’ Assembly but deliberately chose the proposed ones instead. They did that for a reason, and it wasn’t to make things easier for persons with disabilities and carers.
“Government and Carers Ireland say vote yes so we’ll have the right to sue. Some argument that! We have the right to sue as it is and do so daily to access even the most basic services, not that court rulings make much difference, it’s still a fight to have these even partially implemented.
“It’s not easy being a carer or a person with a disability in Ireland. We need the Constitution to recognise us with rights to State services and resourcing, not with patronising, sleight of hand, pats on the head.
Anonymous (50s), Dublin, a full-time carer for their daughter
“The words that stand out for me in Article 42B are ‘The State will strive to support’.
I cannot stress how important it will be for carers such as myself to be recognised for the work that we are doing in the home.
“We provide nursing standard care to our loved ones in our own homes. We work long hard hours behind closed doors giving this care which comes in many forms. It is often physically heavy, mentally tiring and emotionally draining. We work weekdays, weekends and Bank Holidays without adequate supports, cover, breaks or respite.
“Being a parent of a profoundly intellectually disabled child means that you are a carer, and working, for the rest of your life. Resigning or retiring is not an option.
“With this in mind, it is of the utmost importance that carers will finally receive the recognition and support that we deserve by the State and society as a whole.”
Simon Burke (66), Kilkenny, concerned for grandson’s future
“I am the grandfather of an intelligent, empathetic, infectiously cheerful six-year-old autistic boy with limitless potential.
“He will, of course, long outlive me and probably his parents. Who will care for him then, if the State succeeds in offloading its responsibilities onto ‘the family’?”
“The Government’s refusal to accept the wording of the Citizens’ Assembly; guillotining of any debate on the wording by the Oireachtas; ignoring of the advice of a huge number of concerned solicitors and barristers on the likely legal effect of the amended articles; is deeply suspect.
“It smacks of an attempt to embed neoliberal politics into the Constitution and replace a rights-based approach to disability with a Victorian charity model.
“If this referendum passes, I will go to my grave haunted by the fear of Ciarán, my grandson, ending up in the workhouse or its neoliberal equivalent.”
Emma O’Riordan, Cork, a carer for her two sons
“My youngest son was diagnosed privately with autism at age 2 due to the fact the assessment of need would likely take years. I left my job to care for him. I was a preschool teacher. He was nonverbal until he was three years old. From the time I received his diagnostic report, I can count on my hands the number of appointments he has had publicly.
“I have had to source and fund private speech and language therapy, occupational therapy and other therapies to give him a good chance at life. He is currently in 1st class in an ASD class and is integrating into mainstream education. I have had to fight in the courts already to get his needs met.
“I became a carer to my eldest son in September 2022. He was previously healthy but began having daily panic attacks. This affected his school life so much that he had to get home tuition. Our GP and two hospital consultants tried to refer him to CAMHS on three separate occasions. All refused because, in their view, he was not severe enough.
“In March 2023, he began oversleeping where he could not be woken at all. He would sleep all day and sometimes only wake at 7pm. I applied for an assessment of need for him and in June 2023, he was admitted to hospital overnight for tests. A hospital consultant recommended he be assessed for ADHD inattentive subtype. CAMHS again refused to accept him.
“I had to pay €700 to get him privately assessed and get him on medication to help him. Since then, he has gone back to school and is working on getting his school life back on track.
“Due to receiving no public help, I have to pay €150 for a psychiatrist appointment, €30 a month for medication, €120 for occupational therapy and €100 a session for speech and language therapy.
“This is my situation, and the government’s refusal to change and support carers is evident.
“Parents already have to go to court to vindicate their child’s rights. A change of wording in the constitution to pure lip service. Another act of virtue signalling by an out-of-touch government.
“If the government truly wanted to help carers, they would agree to the optional protocol of the United Nations Convention on the Rights of Persons with Disabilities. This would give a legal standing to allow people with disabilities and their carers to go to Europe and get legal vindication for their rights.
“I receive Carer’s Allowance for my autistic daughter. It’s a very small world and can be lonely, frustrating and exhausting. My support comes from Facebook groups and my free time for things like exercise and shopping is when my daughter is in school.
“‘Strive to support’ is insulting, I’d rather get no allowance and be able to work but childcare isn’t available, and even if it was, could I afford it?”
Anonymous, a member of the Citizens’ Assembly on Gender Equality
“As a member of the Citizens’ Assembly on Gender Equality, I find myself in a strange situation.
“I’m also a full-time carer. For two years we worked on this, with many legal experts on the wording. A 100% vote that care should be recognised and supported by the government. With clear and precise wording, so that a yes vote could be the only option.
“I find myself unable to support what I hand-on-heart, supported 100%, as the onus is being put on the family of which most carers are women.
“I don’t have family to take care of my child after I die. So will he end up in a home, after fighting all his 22 years for services and listening to service providers talking about independence?”
“The wording needs to go back to what the assembly proposed in the first place, or bring members back to work with legal teams on better wording.”
Anonymous, cared for by his wife for the last 30 years
“We don’t trust the government and we don’t understand one word of the wording in the referendum, so we have decided not to vote in it.
Anthony Crowley (56), Cork, a carer for his wife
“I’m still unsure of what way I’ll vote. I’d like to hear more debate and understand it better before I vote.”
Some quotes have been edited for clarity and brevity.
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