Maria O’Brien hates it when Government ministers praise carers for doing “amazing work”.
The mother of three says she will always care for her nine-year-old son Harry, who is profoundly disabled.
“Harry’s my child – of course I am going to care for him,“ she says. ”Rather than a pat on the back, our families need support.”
It is clear Ms O’Brien adores and cherishes her son. She is nonetheless “physically and mentally exhausted”. Finances are also a constant worry.
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She would love to take up part-time work to increase the family’s income, but cannot do this for fear of losing her Carer’s Allowance. The “inflexibility” of many workplaces also makes it a non-starter.
Harry is the eldest of three. He has a severe intellectual disability and epilepsy, serious respiratory challenges, is tube-fed, visually impaired and has severe osteoporosis and scoliosis for which he is awaiting surgery.
He is non-verbal “but is well able to tell us what he wants”, says Ms O’Brien with a chuckle.
Harry listens to his mother as she speaks at their home in Sallins, Co Kildare, his face lighting up whenever she turns to him. “You are just so cute. You are gorgeous,” she tells him as she cuddles and tickles him.
Harry was a “much longed-for baby” after a number of miscarriages. Though she and her husband were aware he would be disabled following antenatal scans and tests, they had not anticipated how totally dependent he would be.
“I took redundancy two weeks before Harry was born,” says Ms O’Brien, who was working in a bank that has since withdrawn from the Irish market. “I was going to give myself six months to be at home with the baby and then go back to work.”
Harry attends a special school and needs 24-hour care. Support with home-care nurses has increased to seven nights a week provided by the HSE.
Ms O’Brien is one of 104,000 carers in receipt of Carer’s Allowance, up from 89,000 five years ago. It is worth up to €260 a week but is means tested, meaning all household income is assessed along with savings. She also receives the domiciliary care allowance of €360 a month.
She could work up to 18.5 hours a week while her husband, a Garda, could work unlimited hours without affecting the Carer’s Allowance. However, the Department of Social Protection must be notified of any increase in earnings.
The amount a single carer can earn while retaining their allowance is €625 a week. For a couple, this figure doubles to €1,250. From July, 2026, these thresholds will increase to €1,000 a week for a single person and €2,000 for a couple. Carer’s Allowance is taxed.
Government has committed to doing away with the means test but has not said when. “We need to see this done as a matter of urgency,” says Family Carers Ireland.
A survey it conducted in 2024 found 69 per cent of carers struggled to cover day-to-day costs while 29 per cent had cut back on heating or groceries. It found families with carers were significantly more likely to experience poverty than families in the general population.
“I have looked into part-time work while Harry is at school,” says Ms O’Brien. “But I can’t guarantee I can be available every day if Harry gets sick. I would need flexibility. If a job didn’t work out and I had lost the Carer’s Allowance, I’d have to apply again. We could be weeks without it and we can’t afford that.”
The family’s costs are significantly increased by Harry’s disability. On top of their mortgage, they have a large credit union loan taken out for adaptations to the house. This included opening up the back to make it wheelchair accessible, adding a downstairs bedroom, an overhead electric hoist and a wet-room. A grant from Kildare County Council contributed €12,000 to this.
They had to purchase a mobility van, which was exempt from VAT but cost about €80,000 and was added to the loan.
“Our energy costs are huge,” says Ms O’Brien. Harry’s BiPAP breathing machine and wheelchair have to be charged. With night-nurses, heating and lights are in use through the night. “The house is constantly running.”
She goes to different supermarkets for the best value and sells items they no longer need on sites like Vinted. She dreads weeks when Harry has several appointments. “I am going, ‘agh, the diesel’. I haven’t filled it since we got it. I put in €20, or sometimes just a tenner to get it going. Then pay for parking in the hospital. It all adds up.”
Family and friends fundraise to help – a step Maria and her husband were initially reluctant to take.
“I sat down with my husband and said, ‘we have to do it for the kids. We have to swallow our pride. Otherwise we just sit here struggling’.”
She is determined the family will enjoy life and they take trips in Ireland “to make memories”.
But she feels carers and their families are not respected by Government. “Stop saying carers are great. We are not great. We are just doing what has to be done, looking after our families, doing the work. Just support us properly to do that.”
This article is part of a series, running in The Irish Times this week and concluding on Saturday, highlighting the barriers faced by disabled people in Ireland to realising their rights to participate fully in education, employment, housing, transport and society.
