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'I'm on call 24 hours-a-day, seven days-a-week': Family carers stage protest outside the Dáil

Several carers spoke today about the huge amount of work they do looking after loved ones.

05-Carers-CagedProtest Tracy Carroll from Kells County Meath with her daughter Willow (2). Dylan Vaughan Dylan Vaughan

CARERS HAVE BEEN protesting outside the Dáil today, saying their contribution is not being recognised are that they’re effectively being penalised for the work they do. 

A change introduced in last week’s budget saw the number of hours a carer could work or study outside the home increased, from 15 hours a week up to 18.5 hours a week.

Family Carers Ireland, which represents people who work in the home caring for a dependent person, says the decision not to also increase the Income Disregard for Carers Allowance means that a carer who works extra hours could have their allowance cut if their income increases too much due to the extra work.

The group organised the protest today with a spokesperson saying the government “have family carers in a box”.

Several carers spoke today about the huge amount of work they do caring for their loved ones.

“I am a family carer to my 10-year-old son Richard. I have two other children, aged 12 and 14, and Richard needs 24 hour nursing care,” Brigid Flanagan from Termonfeckin told TheJournal.ie.

“Unfortunately, we have a package for two for nurses at night, seven nights a week but there aren’t enough nurses available. I’ve had to give up my job and I feel that I’m now Richard’s nurse and I’m not necessarily available to my family as a mother.”

I’m on call 24 hours-a-day, seven days-a-week. On our 15th wedding anniversary my husband and I tried to go into town just have a cup of coffee and a chat. We were literally three minutes at the road when there was a problem with Richard’s feeding tube and we had to turn and abandon it.We’ve had to abandon many family occasions, I’ve missed my god-daughter’s 21st, I’ve missed weddings, I’ve missed funerals, I haven’t been able to go to some of my children, older children’s, sports days and special occasions. Anna hasn’t had a birthday party for the past two years because we don’t have nurses.

Damien Douglas from Lucan is a carer for his twin daughters who have Wolf-Hirschhorn syndrome. 

“They can do nothing for themselves and need total care in every of their life,” he says.

“We’re not looking for the impossible. We were looking for something that might make things a little bit easier for carers,” he adds of the government’s efforts.

Home carers who apply for the allowance are means tested, meaning that a spouse’s income is examined as well as the carer. If the income exceeds €332.50 per week for a single person or €665 per week for a couple they may only be entitled to a reduced allowance or no payment at all.

“If they ease the means test that would help a lot of people,” Douglas says.

“If they looked at raising the amount of savings you can have and qualify, that would help. If that even consider providing services for people to support them.”

He adds that getting support is a “postcode lottery” in that availability varies wildly compared to where a carer is based. 

“Some parts of the country there’s little or no services whatsoever. Or respite means totally different things, respite might mean a day service as opposed to a couple of nights away in the service. Some families, because of the lack of services, are literally caring 24 hours a day, seven days a week without any break.” 

Caroline Poole, who works for Family Carers Ireland, echoes these concerns.

“There are so few hours of support for people now in the homes to give them breaks,” she says.

“It’s absolutely ridiculous. It’s government policy to keep people in the home for as long as they want to be and as long as it’s feasible for them to be there.”

06-Carers-CagedProtest Minister for Social Protection Regina Doherty. Dylan Vaughan Dylan Vaughan

Minister for Social Protection Regina Doherty attended the protest to hear the concerns of the carers and accepted that supports are “nowhere close to what’s needed”.

“It isn’t down to one minister, just because my department happens to pay income support to people who are caring, doesn’t cut anything close to what’s required as a national response to carers,” she said.

And so I suggest that we look towards the Citizens’ Assembly to have a cohesive message going in, so that recommendations come out to whoever is government and can thereafter be implemented over the five years of whoever is in power.  

A Citizens’ Assembly to consider the issue of care has been in the pipeline for some time and the minister said it would be “the best place” to form a wider plan.

04-Carers-CagedProtest Jacinta Fortune from the Navan Road in Dublin inside a cage as part of the protest. Dylan Vaughan Dylan Vaughan

One carer named Johanne Powell, who has cared for her daughter for 35 years, told the minister that many carers would be simply too tired and busy to participate in the Citizens’ Assembly.  

Doherty accepted this and said that she would look at ensuring that the Citizens’ Assembly interviews carers in their own homes.

“There are a number of carers that contact me on an almost daily basis and there are nights I go to bed feeling incredibly guilty because I can’t do more,” she added.

“Don’t underestimate the power of individual contact, the power of social media. Having said that, we can only affect what is potentially a very sizable change in an orderly manner if we have a cross-party agreement on the basis that this is what we should do.”

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