They save the Irish State a reported €20 billion per anum, but spend their days constantly having to fight for recognition for their work. Despite living in the third 'wealthiest' country in the world, the life of a carer within the home in Ireland is one of financial and career insecurity, loneliness and anxiety.
Nobody in life plans to become ill or disabled, nor do they think it will happen to their loved ones, but it does. Disability is a fact of life, but it is one very rarely discussed on a wider scale. The result makes those living with a disability or caring for someone with a disability, feel ostracised, lonely and a forgotten, a 'bleak' element in Irish society that is not discussed.
For mother of five, Anna Budayova from Tuam, she had spent her life 'doing everything right', working towards goals and aspirations that are laid out for people in childhood; study hard, work hard, have a family and work until retirement. This life plan was permanently altered for the family in 2021 when baby Esther was born with Trisomy 21, commonly known as Down Syndrome, and an Aatrioventricular Septal Defect (ASVD ), a serious heart condition as well as other health issues stemming from each afflection.
"I sometimes look at Esther and wonder how many more summers we will have together, it might be four summers and that terrifies me, and it also might be 60 which also terrifies me because I might be caring for Esther forever, because it will be forever - she will always need to be cared for," said Budayova, the sound of distress ringing through her voice as she thinks to the future.
"You love your baby, like any parent loves their child and when they are sick, you kind of forget about yourself. Seeing them get weaker breaks your heart and there are no words to describe it. It is hard enough to have a child, but a sick child is extremely difficult. When you have disability in your house and in your family, it is hard. People will look at her and see Down Syndrome and say 'you will be fine', but they don't see the other conditions and the amount of care she needs.
"I have no idea how long will I be able to keep doing this."
A job you can't clock out from
For family carers like Budayova, the service they provide is not one they can walk away from when five o'clock comes around; it is a 24/7, 365-day responsibility that requires all your focus, time and energy which they do because of love. It has to be because of love, because there are very little, if any, benefits to being a family carer in Ireland.
For family carer, Deirdre Lally, who has been caring for her father, Michael John, for the last decade, the 'part-time' carers allowance translates financially into an unlivable sum, requiring her to work to supplement the payment to keep the lights on and food on the table. Similarly, to 'full-time carers', 'part-time carers' work hours in the home that do not match the national definition of 'part-time' employment, because of this they have to supplement their income by working, but for a maximum of 18 hours per week.
"I definitely am not paid enough. It is just enough to make ends meet and as a carer you shouldn't have to go out to work to survive, you should just be able to be a carer. Even if I shared the responsibility of caring for my dad with the family, I can still only work the 18 hours I am allocated to work so none of us would be financially well off, or comfortable."
The hours cap on part-time carers she says is an obstacle that makes very little sense, being a family carer means that any job you can get outside the home requires flexibility and understanding that the person they are caring for takes precedent, meaning that the ability to work is impeded automatically by the responsibility of being a carer. In a form of irony, Lally's supplementary occupation to enable her to take care of her father is that of a carer, with her going to relieve other family carers, so they can get a break or go out to work.
"My dad has chronic heart failure, so keeping on top of appointments is a big thing you have to work around, with me being his carer he should be my most important focus but financially, I can't."
Lally, a resident of Vermount, Menlough, has been caring for her father since her mother's passing. While grieving, she had to go jump through extensive, repetitive and complicated hoops for six months before her carers application was approved. During this time, her work hours were capped despite her not yet having been approved to be a carer and receiving no financial aid while in the processing time.
She speaks warmly of Michael, her father, throughout sharing her pride at his positive outlook on life and the gratitude he shows to those who take care of him and for Lally ensuring his comfort is a priority that she will maintain for as long as she can.
"I have been a carer for 10 years and that's not going to change at this stage in my life. If my dad's health deteriorates, it may change but until that happens, I will do my best to care for him the best I can."
Means tested Carers Allowance
The standard payment for Carers Allowance in Ireland for a carer aged under 66 who is caring for one person is €236 per week. Job seekers allowance for someone aged 25 and over is €220. For arguments sake imagine two applicants of either social welfare payment in front of you, both are entitled to receive help in Ireland, but the existence of one is financially beneficial to the State. Without the family carers, residential care centres for the elderly and the disabled would collapse under the demand.
In 2022 a HSE report into home-help and hired carers found that Ireland is in the middle of an 'acute' shortage, with more than 5,000 people in July last year alone waiting for home support because of lack of staff. This is during a time where there are half a million home carers in the country, including 70,000 young carers.
Young carers, or child carers, are children who grow up aiding in the caring for someone in the home or in the family. In the Buday household, 13-year-old Sarah Ann, aids her parents in caring for Esther and her younger brothers, seven-year-old Issac, nine-year-old Anthony and 10-year-old Benjamin. In December 2022, Sarah Ann was awarded the title of 'Young Carer of the Year' for the Connacht region.
Anna Budayova with her children; Issac, Sarah Ann, Esther, Benjamin and Anthony.
Carers allowance in Ireland is means tested, and is a substantial financial obstacle for thousands of families in Ireland who care for a family member. In the case of the Buday family, Anna receives no financial supplement from the state because of her husband, George's income, despite the fact that the cost of disability in Ireland is incredibly expensive and is a burden also placed on the one income coming into the house.
"I received a letter from the social welfare explaining that I was getting €4 in carers allowance and I cried for days. I feel worthless, I work non-stop and because I love my child that won't stop but I don't know how much longer we can keep going.
"The means test is wrong because it makes carers dependent on their spouses, and even if you got €11 in carers allowance, for example, you would spend it on your child.
"Carers are mostly women and the lack of recognition and income makes us vulnerable. I have spoken to other carers who feel threatened in the home and it is terrifying to depend on someone that much.
"There is a lot of focus on equality now, and I speak about it with my kids at home and make sure they know people should be treated equally, but family carers are people in Ireland who are forgotten. We are not treated well and we are dependent on our spouses."
Breakdown
For those full-time carers who do receive the €236 per week, in exchange for 24/7 care, it works out to a payment of €1.40 per hour. Compared to the current minimum wage of €11.30 per hour, carers would receive nearly €1,900 per week for working the same hours, but of course it is not legal to work that much in Ireland - except if you are a carer.
Catherine Cox, Head of Communications and Policy at Family Carers Ireland, said, “There is a widespread consensus that the current system is unfit for purpose and needs urgent reform. We do not shy away from the fact, nor the reality that many of the challenges facing family carers have been deeply ingrained for years and, even with the required resources and political will, cannot be fixed overnight. But it is high time that we made a start. It is only fair that the Government utilises some of the super surplus in the state’s finances to initiate this change.
“One of our top priorities in Budget 2024 is to embark on a four-year journey to address the long-standing shortcomings of the Carer's Allowance scheme. This would cost an extra €397 million per annum. By consistently increasing the income disregard and ultimately eliminating the means test, we aim to provide much-needed financial support and recognition for the invaluable work performed by family carers.
“Family carers, who save the public purse billions of euros a year, are being expected to quietly prop up our health system with little to no support. Instead, they are pushed to their limits by relentless caregiving responsibilities, scarce opportunities for respite, and inadequate and patchy support and services. As the cost-of-living crisis has continued to bite, these pressures have only been compounded, and meeting them is doubly hard when family carers are forced out of work due to the demands of caring. Many are terrified about what the future holds.
“Relied upon but not listened to and expected to give so much but getting little in return, family carers are constantly expected to persevere without receiving the assistance they need and deserve. They are overlooked and consistently sidelined in policy and funding considerations, despite their acknowledged value. This situation simply cannot continue, so we have set out an extensive range of policy recommendations that must be pursued as a matter of urgency. It is time for action, it is time for substantial and meaningful change."
