How did the Before We Die campaign come about?

It came about through fear, love, a worry about the future.

And I think when I turned 70, I realised that I was older than my two grandfathers who died at 69 and realised, oh, my God, I'm old.

I'd had my head in the sand for such a long period, not thinking about the future, afraid to think about it because effectively there is no future.

I had the idea about starting a campaign, couldn't think of a name.

The Irish Times published an article last June 12 months about the waste of money in the HSE and I was outraged by the 100 million just lost.

wrote a letter to the Irish Times and a friend of mine who had worked in RT called me and said, would you like to try and get on radio to make your point? I got on LiveLine and that gave me a licence to talk to people about what do you think is going to happen when you die? So we had our first meeting in October of last year through an arts club that Aoife is in and literally it's gone from a meeting of about 12 mothers to now we have over a thousand members, we've met the Taoiseach, so we've moved it on.

Everyone's more than welcome.

And was there kick up then about it? Or is it just my own ignorance that maybe only since we've really started talking about this in any great extent in recent weeks that people, I suppose, are fully aware of the difficulties or the hurdles that the Act presents? Or was there much kick back in 2022 to it?

No, I've looked at the debates and the...

You see, in a way, you're kind of giving people rights to decisions and it was all...

And what, of course, they never did was talk to parents and say, well, can we run this by...

So I said to the Taoiseach, I said to the ministers, I said, do you remember the programme called Yes Prime Minister? And they'd say, yes, Prime Minister, that's a very good idea, but have you considered? And they never considered the people who would be very vulnerable, like, I mean, I know a lot of parents here, like our sons and daughters.

I also made a point, I think, which is kind of relevant, and I have a slight stammer.

Now, when I was teaching, people used to say that was a disability.

It's all of the people yourselves that

What do you hope to achieve?

And we hope to achieve to, I suppose, move the dial.

I mean, it has to be remembered that we're just parents who are basically on our knees caring.

And I don't want this campaign to turn into a Tony Murray show.

I have to say that because, you know, I happen to be the one that's on radio now, but there's so many other parents.

And so I suppose really essentially what we're trying to get them to understand is that When the word emergency is used, emergency accommodation, that's a euphemism for really accepting that the parents have died or they're incapacitated.

And that emergency accommodation will be far away from, in my case, Aoife's home, her service, her friends, her social club.

Would you agree with that? Yes.

What was the upshot of that?

Oh, dear.

More promises, we're doing this, we're doing that.

But effectively, we kept saying, but we've heard all this before, another database, housing officers, blah, blah.

But, you know, meaning well.

I think the big issue is that in the budget, there was an allocation which the HSE has got.

to provide housing.

Can you maybe tell listeners, Tony, about the response that you've had to the campaign, I suppose, really since you've kind of been speaking out about this?

level...

Yeah, it comes back and says, oh, no.

So when we spoke to somebody who was training staff in IFA service, I happened to raise that I have a joint bank account with IFA.

And she said that was wrong.

I shouldn't have access to her money.

I pointed out that while IFA lives at home, she has no idea about banking, could not use an ATM.

And she said, well, let me think about it.

you're a full-time lobbyist only aren't you

That look after Aoife on a full-time

basis.

Yeah.

And the worry for every parent when they have a child with special needs, but as you get older, of course, it comes more into focus, is the basic question, who's going to look after Aoife when we're no longer able to care? And I used to say a few years ago, if I'm now at 70, 71 next month, it's when I'm no longer able to care.

And my wife is the same.

And it's just pretty desperate because at the moment, I've just come out of the Dáil at a committee meeting there.

And what I have to say is there's no plan even to have a plan for housing for residential, for residential housing for adults with intellectual disability.

No, sorry, Tony, I didn't mean to cut across you there, but I was just going to make the point, you know, that I know from talking to various different people, you know, over the years here on the show and in, you know, pretty similar situations to you and to your wife, Susan, like you've probably spent most of Aoife's life as an advocate and battling in some shape or another for her.