free webpage hit counter

‘Damned if you do & damned if you don’t – Frustrated Irish mum ‘punished’ by strict means test while caring for son, 22

PARENTS who have been forced to leave work to care for their children are being denied a carer’s allowance due to a strict means test, with one mum claiming: “I feel like I’m being punished.”

A group of family carers met with politicians near Leinster House today to urge the Government to live up to its promise to abolish the means test for the carer’s allowance in the upcoming budget.

Photo of two families with adult children with disabilities advocating for family carers.
Parents forced to leave work to care for their kids are being denied a carer’s allowance
Mark Stedman
Photo of Family Carers Ireland launch event, showing people holding pamphlets and a young girl in a wheelchair.
Carers are urging the Government to live up to its promise to abolish the means test
Mark Stedman
A man holding hands with his twin daughters, who are sitting in wheelchairs.
Family Carers Ireland are urging the Government to increase the means test disregard
Mark Stedman

People who care for a loved one with additional needs can benefit from a carer’s allowance worth €260 a week.

However, carers are ruled out of this payment if there is an income of more than €1,250 per week or €625 for a single person – following changes that kicked in this week.

A separate carer’s grant of €2,000 is paid out once a year to help with the cost of caring, but to qualify carers must not work more than 18 and half hours a week in a job.

Both Fianna Fail and Fine Gael promised voters in the run-up to the general election that they would abolish the means test, with Family Carers Ireland now urging them to take action in the upcoming budget.

Lynsey O’Donovan cares for her son, Jack, 22, who has cerebral palsy and is non-verbal, incontinent, and also suffers from epilepsy.

The mum does not qualify for the carer’s allowance because her family income is slightly over the threshold.

She told the Irish Sun: “I’m not recognised as a carer whatsoever because we’re slightly over the means test.

“I had to start work last year. So because I started working and in January I did a few hours over the 18 and a half hours you’re allowed without thinking and now I didn’t get the support grant either.

“You’re damned if you do and damned if you don’t.

“I feel punished. I get up to turn Jack at least ten times a night and that’s on a good night.

‘SO FRUSTRATING’

“It is so frustrating that I get no recognition from the State. Lifting that means test would be massive for us.

“I could stop working or even just cut back my hours because I go to work and I’m coming home and Jack is coming home and it is full on.

“He’s peg fed. He needs attention 24/7. He’s non verbal and incontinent and epilepsy as well. So it would make a massive difference.”

Dubliner Paul Skelly was forced to leave his job during the Covid-19 pandemic to help his wife, Moira, care for their daughter, Ciara, because all her support services were cut.

‘I HAD TO GIVE UP WORK’

Ciara has cerebral palsy, autism and epilepsy.

Due to Paul’s job, he did not qualify for the carer’s allowance; meanwhile, other people who could not work due to the Covid-19 restricts were receiving €350 a week through the PUP.

He told the Irish Sun: “When Covid hit, all her services stopped. Moira was the carer. I was working but when the services stopped I had to give up work at 64 to help care for her.

“But I didn’t qualify for the carer’s allowance. I went on the dole for nine months and then that was cut.

‘THEY DON’T LOOK AT THE COST’

“So you had kids on our road with part time jobs that were getting €350 a week and I was getting €50 because I had to leave my job to help care for my daughter because the services stopped.

“I didn’t give up to play golf or swan off. I got a lump sum when I left work and that’s all gone to sustaining us.

“When you means test everything, they don’t look at the cost of everything like adapting work at home – there’s grants but they don’t come anywhere near the cost so you just re-mortgage and re-mortgage.”

“You’re damned if you do and damned if you don’t.”


Lynsey O’Donovan

Damien Douglas was a psychiatric nurse and his wife was a nurse before she left work to care for their twin daughters Una and Ailis who both have a rare condition called Wolf-Hirschhorn syndrome.

FAMILY THRIVING

The family were told that Una and Ailis would not live for more than two years but both girls are now 30 and thriving under the care of their mam and dad.

However, as Damien continued to work, the family did not get any carer’s allowance until this year.

The weekly disregard for the carer’s allowance was raised this week to €1,250 for a couple with Damien and his wife now qualifying for a full payment for the first time despite caring for their daughters for decades.

He said: “Today is the first day that my wife and I have actually got a full carer’s allowance because of the new €1,250 allowance.

‘IT WAS ROUGH’

“We’re well off insofar as we survived without the full carer’s allowance, but both of us had to give up work over the years.

“My wife didn’t get a pension at all until two years ago. I had a pension but far reduced than what it would have been if I was able to continue working on until I was 65.

“We still managed. Nobody starved in our house and we never missed a mortgage or an ESB bill (payment) but it was rough and that’s just the financial challenge of caring.”

He added: “If I was an artist struggling I would get €325 a week which was brought in two years ago. The most a carer can get full time is €260 a week or €280 if you’re over 60.

‘INEQUALITY THAT DOESN’T RING TRUE’

“There is an inequality in that that doesn’t ring true. It devalues what we do. It is not seen as being important.”

“I didn’t give up to play golf or swan off. I got a lump sum when I left work and that’s all gone to sustaining us.”


Paul Skelly

A briefing for politicians heard from carers who raised a range of issues from waiting lists for therapies, lack of respite services, complications in transferring to adult services and problems accessing appropriate changing facilities.

Family Carers Ireland are urging the Government to increase the means test disregard to €1,500 per couple and €750 for a single person in the upcoming budget on the pathway to abolishing the test altogether.

The carers group is also urging the Coalition to increase funding for respite services to give carers help in day services or overnight services.

Lynsey O'Donovan with her son Jack at a Family Carers Ireland event.
Lynsey O’Donovan doesn’t qualify because her income is slightly over the threshold
Sam Boal/Collins
Clare Duffy, Policy and Public Affairs Manager at Family Carers Ireland, speaking at a pre-budget submission.
The carers group is also urging the Coalition to increase funding for respite services
Sam Boal/Collins

About admin