Oireachtas Joint and Select Committees

Tuesday, 8 November 2022

Joint Oireachtas Committee on Autism

Autism Policy: Discussion (Resumed)

Mr. Mark Darmody:

Then there is the point about carers. The Senator is right to bring up the means test, because it is crippling. It feels on the ground like the Government wants to have an argument with you over pennies when there is no realisation that your life is being devastated or that you are providing 24-7 care. My wife has a master's degree. She was taken from her career because of this. It is really tough. I do not think it comes across that our lives have basically been destroyed. Then we have to argue over the means and so on. Say I earn X amount. Once I go over that, it basically comes off the carer's allowance. Family Carers Ireland bring that up all the time and it is right on the point about getting into an argument. Even the fact that carers are seen as welfare is an issue. My wife takes offence to being considered a welfare recipient. She worked and studied so hard her whole life. Carers, to me, are not welfare. We have a 24-7 job. I look back to when we might have worked only eight hours a day. God be with the days. It is 24-7 now, 168 hours a week. I have to sleep with Neil at night-time. It actually is 24-7. As Cara said, when people say to us, "Have a nice weekend", we do not have a nice weekend. I am just laying it out there. It is really bad on the ground.