Caring for an adult with a disability
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What is the Before We Die campaign and why was it launched?
The Claire Byrne Show on News Talk with Aviva Insurance.
We're going to talk about parents of adults with intellectual disabilities who want to know who will look after their children when they no longer can. It's a campaign called Before We Die. It has been pushing for help now for over a year. And they met again this past weekend in the Helix in Dublin. And two of those who were there in the Helix were my next guest, two members of Siobhan Lochers family. Siobon is down syndrome. Christine is here, uh, who is Siobhan's sister and a regular contributor, regular listeners will know to the programme, and Angela, who is Siobhan's mother. And you're both welcome to the programme. Thanks very much for being with us. Lovely to have you here. Maybe we'll start with um talking a little bit about Siobhan.
Christine, do you want to tell us about her?
Yeah, um well Chiobne is the youngest of um eight of us. Um my mum has very big family. Um quite a character. I was just saying to my mum before we came in here, if she was here, you wouldn't get a word in edgeways. Claire, she would have taken over the show by now. Um a great character, lots of fun, great crack, um loves her music, loves her drama, um and has done drama for a long time and really the center of my mom's life. Um and and my mum's reason for getting out of bed every morning. Um but a but a really, really lovely, lovely young woman that we adore.
Okay.
Do you want to add
that Angela tell us a bit more about Siobhan basically is the light of my life, you know, and my life centres around um her life and her the function of her life. How old is she now, Angela? She is thirty-four. She'll be thirty-five in November. And um she has a great life. But she has a great life because of me and because of the work that I have put into creating that life for her, which has been hard sometimes, you know, p um I'm very much a person that tends to paddle their own canoe, sometimes to my detriment, um might I say. But um there are great supports out there and they have been a great support to me.
Who are Siobhan Locher and her family and what is her daily life like?
um down Cinder Marland um have been fantastic, Eifna Gaffney in particular. Remember Us, which is a a social group that was set up by Nora Robin that is based up in Balbriggan. Uh Nora set it up many um years ago. Um fundraises um tirelessly for it. Depends an awful lot on um volunteers and a lot of those volunteers are aging parents of
They're young adults. And that's it. And I know there's I know there's support out there and it's great. But you're the linchpin of this whole thing. Yeah. Right? And that's In my family. In your family. And that's what the campaign is about, isn't it? Because what happens when you can't do what you're doing?
That's the big worry for me and it's a worry for every parent that has a a a young adult with intellectual disabilities that we have spent all our lives creating this um supported living for them in their community and, you know, facilitating their their life basically. And what happens when I die? What's going to happen to Siobhan? And that's That's the biggest worry. That's the the the kind of thing that keeps me awake at night. Um, you know, as I'm aging, my my own health has has suffered and, you know, I've had surgery in the past that has necessitated me being in hospital for a period of time with lots of complications where the rest of the family had to step in, but it threw them into a crisis situation.
Because they're all working full time and they they cannot replicate what I do for Siobhan because it's such a huge imposition for them taking time off work. And it isn't just her siblings, it's the knock on, it's their partners, it's the rest of the family. Because they all have young children and they're
Yeah. You see the other thing as well is is what life is going to look like for Siobhan at some point down the line. So you want her to be remain in her community with her friends and with all the sports that she has.
Why are aging parents worried about who will care for their adult children with intellectual disabilities?
Yes. Yeah. And I guess one of the wake up calls I suppose we had as a family was when my mother was hospitalized two years ago.
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Chapters
7 chapters
1
What is the Before We Die campaign and why was it launched?
0:01–2:13
2
Who are Siobhan Locher and her family and what is her daily life like?
2:13–4:09
3
Why are aging parents worried about who will care for their adult children with intellectual disabilities?
4:09–6:44
4
What challenges do families face when trying to secure community‑based support and housing?
6:44–9:02
5
How many young adults with intellectual disabilities need a residential‑care plan and why is the problem larger than expected?
9:02–11:37
6
What is the proposed ‘one‑stop‑shop’ model for planning adult‑disability care?
11:37–13:21
7
How can listeners help the Before We Die campaign and support families like Siobhan’s?
13:21–14:50