Ms Emily Thyne:

I thank the committee for inviting me along today and for letting me talk to members about my circumstances. I am a full-time carer for my son, Malachy. I would like to be clear that I am speaking not only for myself but for the many others who are in a similar caring role. I have been receiving carer’s allowance since around February 2022, although I had started the application process in October 2021, when the country was just making its first tentative steps to come out of lockdown. My industry, unfortunately, was one of the worst affected. I was a freelance violinist. My last concert was in the Bord Gáis Energy Theatre and it was the first concert the National Symphony Orchestra played in front of a live audience since lockdown had started a year and a half before. I had been receiving the pandemic unemployment payment since its roll-out, but that had stopped and started a number of times due to the nature of my work. Between that, and being freelance, I did not fit neatly into any boxes regarding income and tax. I was registered, as all freelancers are, as self-employed, but that in itself implies I was running a business and generating my own work. I had to explain countless times that I was hired by other people through plain old word of mouth and, I might add, for being good.

At first, I spent a lot of time on the phone to Citizens Information, trying to get my head around how to apply, and I spent a lot of time printing forms. Then there was the endless amount of information needed to prove everything: doctors’ certificates stating Malachy’s condition and how disabled he was, what he could do and what he could not do. Then there were two years of bank statements - my bank charged me €2.50 per page for that - and six months of statements for savings accounts, credit union, my partner’s current account, even his Revolut account that he only uses for the sharing of buying coffees with colleagues at work.

After our finances were scrutinised, the hours I spend caring for Malachy were then picked apart. I had to explain that yes, he does go to school; yes, my partner comes home by 6 p.m. most days; yes, he is mostly around at the weekends; and we have friends that take Malachy now and again for respite.

It felt like all the focus was on the time I had to myself rather than the time that I had to spend caring for my son.

When I finally received my first carer's allowance payment, I was relieved. It felt like I had won a prize. However, reality has now kicked in. I looked up the minimum wage the other day, just out of curiosity. It is €11.30 per hour for 2023. I calculated that if I worked an eight-hour day, seven days a week - eight hours is about right for school days but weekends and holidays are more like 12-hour days with no breaks - I am getting paid a little over €4 an hour to care for Malachy. I thought about it for a while and I realised that at least I am getting paid, which is great. I have a friend who cares full-time for her profoundly disabled son but who receives no carer’s allowance simply because her husband earns too much money. I can relate to this in some way as when I was being assessed it was noted that we had some savings. I had to point out that because of my husband’s fairly average salary, we would perhaps not be eligible for the full housing adaptation grant and so would have to use every last penny of our savings to adapt our three-bedroom mid-terrace house to accommodate a downstairs bedroom and bathroom.

So here we are, me with my €4 an hour and my husband with his average salary. He cycles 30 minutes each way in to work and home again, with leftovers from last night’s dinner in his bag for lunch. We have one car. I do the household shopping and I put fuel in the car. I supply the kids with clothes and shoes, stationery, occasional treats and all the stuff that kids need. Nearly every week I have to ask him for financial top-ups, while he is trying to keep his bank balance healthy so that when we go to the bank to ask for a bigger mortgage for the build, the officials will not laugh in our faces. Malachy is seven. He is non-verbal, PEG-fed and is only now beginning to walk. He has a full range of behavioural difficulties. They call it severe developmental delay; I call it extreme parenting. To be fair, when he is in a good mood he is great craic and very loveable, but when he has a meltdown he can get into such a heightened state that when I try to soothe him, he lashes out at me with fists or fingernails. Our other kids’ lives are also hugely impacted. They have less of our time, there is less money and there is very little downtime for any of us. Malachy will never be independent. We will never buy him a housewarming present. We might always need to feed him and change his nappy. There is no retirement then. As carers, we live with that every day, for €4 an hour. Many do not even get that, due to the means test. I thank members for listening.