Family carers broke down in front of an Oireachtas Committee, with one mother telling members: "I certainly do not feel valued", as the government was urged to overhaul financial supports.
Niamh Ryan, a full-time carer to her son, Liam, told the Joint Committee on Social Protection, Community and Rural Development that her Carer's Allowance was slashed by €90 in March, despite the rising cost of living. She said she had never received a full carer’s allowance because her husband is working.
"When I brought up the fact that the Carer’s Allowance that I get equates to 78c per hour, I was told that I shouldn’t look at it as remuneration," she said.
"I find that so insulting because being a carer is a job and is a very stressful job at that. I work 24 hours a day, seven days a week with no days off and no holidays. When family carers are told that what we do is worth so little it really makes us feel quite worthless."
She outlined the various challenges she faces in caring for Liam, who has a life-limiting condition and is on 28 doses of 18 different medications and four nebulisers every day, having to give up her job to provide care, taking out loans to cover costs involving wheelchairs and rising energy costs.
"It doesn’t matter that our heating has to be on more than most as Liam misses a lot of school through illness," she said, adding that Liam had only recently returned to school.
"It doesn’t matter that our light and heat are on more than most when we have nursing support at night. It doesn’t matter that Liam’s clothes are more expensive because they have to be adapted for his feeding tube and wheelchair.
"It doesn’t matter that we have extra waste disposal charges due to all of the medical waste and incontinence wear. It doesn’t matter that we have to pay charges for having prescription drug sheets written up every six months so that we can avail of our home nursing package. None of these things matter to the means test but they matter greatly to us as we struggle to pay for them.
"We don’t need to be told, like we so often are, that family carers are 'valued' by our Government. I certainly do not feel 'valued'," she said, crying.
Another carer, Anna Budayova from Tuam in Co Galway, called for an end to the Means test for the Carers Allowance. A mother-of-five, she cares for her baby daughter, Esther, who was born with Trisomy21 and AVSD — a serious heart condition.
"It is only May and I am already worried about how we are going to cover September, secondary school, and boys in the primary.
"Only yesterday, we had to travel to Crumlin for an early cardiology appointment. This meant putting our 4 children to a childminder at 5:15am to be in Dublin by 8:15am."
She said she spent 35 net days just expressing breast milk and NG tube feeding Esther during the first six months of her life, adding: "I was exhausted on every level you can imagine."
She said she received a carer's allowance of €12.50 last November but following a review, this was removed from her in March.
"I feel I am being punished for accepting and loving my child, not perfect in the eyes of this world," she said.
"I work 24/7 with love to care for my Esther. I want to give her all the possible opportunities in this world. But without money it is impossible. My husband pays huge taxes each month. Yet, we are not able to get help when we need it. Just because we are not abusing the system.
"Every mother or father who cares for special needs child since birth should be paid the Carers allowance in full, no questions asked. As if it was not hard enough for parents like us. Our lives are changed forever."
The Committee heard John Dunne, CEO of Carers Ireland, say that the government needed to increase the Carers Allowance to €325 per week in Budget 2023.
And he contrasted the plight of carers with the benefits now open to artists as the pandemic eases.
"The state recently launched a pilot basic income scheme — specific to the arts sector — which will provide a basic income of €325 per week over three years," he said.
"By way of comparison, had the state decided to introduce an ‘Artists Allowance’ modelled on the ‘Carers Allowance’ artists would be eligible to receive a (means-tested) maximum of €224 per week with a requirement that they demonstrate they are working full-time at their artistic endeavours and a prohibition on them spending more than 18.5 hours on income-generating activities."