Liveline

00:00 . . . . . 00:27 Good afternoon. You are very welcome to Liveline 087 484 888 is the WhatsApp number. If you want to get in touch that way, you can send me a message on WhatsApp. You can email me, liveline.rte.ie. Or as always, give me a call on 0818 715 815. We regularly do items and speak to people on this show and cover topics that elicit a big reaction from listeners. I... 00:56 certainly in my time here, cannot remember ever covering a story that elicited such a big reaction. We literally cannot keep up with the amount of people who've been getting in touch. This is something we talked about on Thursday's show. We spoke to Chantal Kellyanne, her mum, about Chantal's son, Arthur, who... 01:20 was brain damaged in utero in the womb and has additional needs and is now a teenager and a big burly lad and Chantel and... 01:30 Arthur's granny, Chantel's mum, love the bones of Arthur and what they want is dignity for Arthur and they want Arthur to be treated in the way he deserves to be treated. But at the moment, he is living at home with Chantel and he is physically violent, so physically violent that one week alone, Chantel ended up in hospital on three separate occasions. Take a little listen. 01:53 I'm literally being physically assaulted by my 15-year-old son on the daily. I might get one day out of the week where he's actually okay and he might need to have a kick-off or he might not have a meltdown. 02:09 To be honest, it's unbearable. It's an unlivable environment. 02:13 doors have to be locked, windows have to be locked, and I mean, like, double locked with keys and all of that, because he's also a runner, do you know? So he'll jump out a window and he'll take flight, which he did on numerous occasions. So, like, I have to be one bedroom, one window open, and that's my bedroom, so, like, it's at the point that my neighbours hear a roar or a scream, they're already on standby to ring the guards. That's without even knocking the check, because they know where it's at, you know? 02:42 So that was Chantel describing her situation. And like I say, we have not been able to keep up with the reaction. There are people who got in touch with us after Chantel spoke on Thursday and we still haven't managed to call them back. So if they're listening, apologies. We are doing our best to get through everybody who's been in touch. I literally left one of the team outside the studio frantically deleting old emails to create extra space in the inbox. So many people have gotten in touch that way. So if you want to get in touch, About this issue and about the three different issues, really, that Chantal raised, one of which was respite care and the lack thereof up and down the country. 03:20 One of which was residential care, which is what she thinks Arthur needs, but which there is very, very little of anymore in Ireland for understandable reasons, maybe. given our past, but there are people who need residential care, Arthur being one of them, and it's not there. There are 18 places in Cork, in all of Cork, and all 18 places are currently full, meaning Chantel keeps having to live like a prisoner in her own home, worried about what might happen. The other, the third issue that was raised are care plans or a lack of care plans for people like Arthur when they get older and when they don't have a family. 03:59 to care for them, because the reality is the state outsources this. They outsource the care of people like Arthur to families. They say, listen, we can't really do it. We don't have the resources. We're not investing enough. But you do it. You guys do it. You take care of it. You take the burden off our hands. All three of those issues were raised by Chantel and other people who got in touch off the back of her on Thursday. And if you have any experience of them or any view of this, We're going to keep this conversation going today. 04:30 So 087-484-8888, the WhatsApp number, or give me a call, 0818-715-815. And Rebecca is on the line. Rebecca, you're very welcome to LiveLine. 04:45 Tell me a little bit about your sons. 04:49 My son has epilepsy and intellectual disabilities. And one is 44 and one is 39. The 39-year-old wouldn't need as much support, but the 44-year-old would. And the care services are not there. I'm 67 years' age now. And when I hear it and tell a story, and I'm, what, 20 years down the road, more than her. My heart goes out to her, being quite honest with you, because the services are still not available today. 05:23 And I suppose the lack of services, lack of respite. I mean, I'll give you an example. My son was in for respite there recently because he was on a break from his day centre. 05:36 He was in Friday, Saturday and Sunday and Monday. So on Friday, I could not drop him in until 3pm where they were able to take him in. So he had Saturday and Sunday off and then he had to be collected before 12 o'clock on Monday. Now, I can't fault the services down there because they were very good. But it's the fact that I'm still on call 24-7 when he's in for respite due to the fact that he has epilepsy and he would have mobility issues as well. 06:09 And I've been doing this for the last 44 years on my own. And his younger brother would have intellectual disabilities to a very mild degree. So I'm actually dealing it on two ends of the spectrum. But there's no services available. If I was to die in the morning, my son, the eldest boy in particular, would have to be presented to A&E. And like you said, these vulture funds, is all I can call them, is where the HSE would put his contract, for want of a better word, up for tender. 06:46 And he could be placed anywhere within 100 kilometres of his home, losing his friends, who he's had since he was 14 years old. He's immediate family. And, you know, and just devastating for him as well because he would be absolutely out of his comfort zone. And it's crazy to think if I died in the morning, what would happen to the two of them? So that's basically where I am as well. So my heart goes out to that girl because she's starting her journey or even halfway through it. 07:18 Whereas I've been doing this for the last 44 years and I still... I'm doing it and on my own, mostly for all of it. So it was actually soul destroying. 07:32 I mean, is there any avenue, Rebecca, that allows you to try and put a plan in place? 07:38 So your eldest dad is not just being dropped at an emergency department. You know, is there someone in the HSE locally? 07:47 Are there any organisations or bodies that say, come to us and we put the plan in place so you know what happens? 07:53 No, and even to get services going forward, I actually had to put them on a housing list to make sure that they would be on a housing list at least for any services of any kind going forward. And I mean, that is hanging over me 24-7, not knowing, there's no plan for a plan to be even put in place. And it is so destroying to think, at this age of my life, I'm 67 years of age, and that this is our government and our HSE and our whatever you'd like to call them, They just are not taking seriously the concerns of people with disabilities and they should be entitled to a life of their own and the dignity of going forward with peace and peace of mind for them and especially before I die, peace of mind for me. 08:41 Whereas the way things are at the moment, it would be emergency care situation if I died and then that had to be presented to HSE find a placement for them as there is nothing in place and that is soul destroying it really is and I know I'm not the only person in this situation but the older I'm getting I'm actually finding it quite hard just to keep on a knees and keels just to keep above board really that's basically where I am just in terms of the burden of care or in terms of that worry what happens after you die both both because I'm on my own with them their father's had 26 years I'm on my own with them and I wouldn't have not that I say I haven't got a family but I wouldn't have they're not in a position to physically take over if anything happened to me they're all within one age of me so that the problem is going down the road I'm hoping I'll stay alive for another bit But, you know, that somebody could step in and say, look, this, this and this needs to be put in 09:45 place or whatever, or that you have the options of this and this going down the road. 09:51 There's no facilities, no options, nothing put forward at the moment. I've even been on to social workers as well. And I was told by one social worker a couple of years ago that if anything happened to me and I died, that there was no facilities available and that my son would have to be presented. to A&E for the HSE to step in. So that's what I'm dealing with on a day-to-day basis. 10:16 And how are you dealing with that yourself, Rebecca? How are you coping? 10:23 Well, as you can see, it stresses me out. But I just deal with it as best I can. Only for the day services that he does go into in the mornings. That's at least for a couple of hours during the day. And I get a half an hour home help for five days a week just to help me get him showered and out the door in the morning so that I don't have the stress of dealing with that first thing in the morning. And then if there's bank holidays or there's anything like that, or they're on holidays, I don't get any cover. 10:58 And basically you're just left to send to yourself. And if I get sick or whatever, I can't afford to be sick, I'm quite honest with you. 11:09 But I do have health issues of my own and I just have to put them to one side and just deal with everything as best I can day to day. But as I'm getting older, it is quite hard to not fear for the future as to what's going to happen. 11:23 Do you think anybody's listening to your concerns, though? 11:28 Not the HSE and not disability services or anything. They're all giving lip service because I've been on to a few people. And they're all saying they're listening and they're doing this and they're doing that. But when it boils down to it, even for the disability thing that came up with on the dial between the Before We Die campaign thing, I mean, they're still, I mean, you can see the response that got. And they're still no further down the line of making a decision as to making a plan as to what plan can be put in place for people like me and my sons. 12:05 And you have the uncertainty of that every single morning when you wake up. You thank God for every day that you have. And I do thank God my two sons are not aggressive and that they are gentle young men behind the stitcher. But that doesn't take away from the stress and the strain of dealing with the uncertainty. If I died in the morning as to who's going to step in, who's going to take care of them and where they're going to end up. 12:32 So that's basically where I am. 12:37 Your story, your experience, Rebecca, it doesn't bode well for Chantal and for others who are maybe earlier on in this journey, if you're fighting this for 44 years. 12:48 Yeah, my heart goes absolutely out to them, being quite honest with you, to Chantal and people like her younger families coming up, because it's been a constant battle and a constant struggle just to get any services for my sons to be put in place. It's just, to be quite honest with you, I'm lucky I'm one of these kind of resilient people that doesn't give up easily because I could easily have just walked away and just said, no, I'm not going to deal with this. And then the HSE will step in and have to find places, which is absolutely a crazy situation to be in because there should be support for people like me and Chantal, but at least you'll have peace of mind going forward knowing at least there's a potential plan put in place for the safety of our adult children going forward. 13:38 And there's not. 13:39 Rebecca, you stay with us because Rachel is on the other line 0818 715 815. 13:45 If anybody wants to give me a call now on this, please do. Rachel, tell me about your son, Isaac. 13:53 So, yeah, Isaac is 23 years old. 13:56 He was diagnosed with autism and ADHD and he was dyslexic. So we had all the battles through school. 14:06 You know, it's trying to get him assessed, trying to get him assessed, trying to get him assessed. Then finally, you know, he's got assessed. He needs an SNA. He needs school transport. That's paperwork, paperwork, paperwork. 14:18 applying for disability carer's allowance, applying for disability carer's allowance. 14:26 Then there's, you know, you've got all that going through childhood and you're still not getting any supports. 14:32 And then you start into adulthood and you've got to go through the social housing, the decision support service. 14:39 And then you're looking for residential care at the end of it and you're still no further ahead. 14:45 And it's, It's just one thing after another, after another. It just fills with forever having to advocate for our children. 14:53 So the fact that you're looking at residential care, you're at that point would suggest that Isaac's needs are fairly acute, that it's gotten to the point where you feel he needs to live somewhere else, is it? 15:09 Yeah. Well, when he was 18, he was doing okay. He's high intelligence, so he was doing quite well. He even learned to drive. But then he had a road traffic accident. He was knocked off his bicycle, suffered a traumatic brain injury when he was 18 years old. And so since then, he's lost all his independence in terms of not being able to do things in the way he was able to do. 15:39 So now, just at the point at which I was thinking that he might have a future, he might need some supported living, but nothing much. Now he will need residential care eventually. And it's just trying to work out how to find it. There isn't any as far as I can find. 16:02 What have you been told in terms of residential care availability? 16:09 Well, because he has autism, he isn't suitable for places that deal with traumatic brain injury. Because he's got traumatic brain injury, he's not suitable for a lot of the autism locations. 16:22 So he's, because he's a complex case, and he also, from the road traffic accident, he has seizures as well at night. 16:32 So we just, I mean, I was completely broken at that a year ago. completely broken um ended up with a gp saying you know i just i can't go on um my husband unfortunately was able he was able to step in and and took took after the took over a lot of the care at that point um and i was asking for respite and even i haven't had any respite zero respite from the hse um I might have three days coming in September, possibly. 17:12 And that's it? 17:13 That's it. 17:16 Day services and possibly three days respite in September. 17:24 What does a bad day look like in your house, Rachel? 17:29 Um... Well, when Isaac is frustrated, because he's gone from somebody who was learning independent skills, knew how to drive, when he's having a day when he's frustrated or tired, he can become not physically aggressive, but verbally aggressive and very much in-your-face kind of situation. 17:59 And the only person who can actually manage to get him into a calmer place is myself. 18:09 So I have to work at regulating him. And when I'm already stressed trying to regulate him, it's very hard. You're having to control where you're at so much and just to keep him calm. and calm him back down. 18:29 So a bad day can be physically, emotionally, and mentally very stressful. 18:37 You know, fortunately, he's not a runner, like Chantal had. 18:42 So, you know, that's one positive thing. But because of his seizures, we can't, you know, he can't be left for any length of time. Yeah. Even on, you know, at any point. So... 18:56 It's hard. 18:58 So when you're working so hard to regulate him, can you regulate yourself or is it just a case of you keep going until you fully break down? 19:10 I have to keep going. I have to keep going and going and going. And that's what led to the last time, you know, a year ago that I broke down. I'd just come to the end of all my resources physically, mentally, emotionally. 19:26 I just had nothing left to give. 19:29 And there was nothing there for, you know, nowhere to take Isaac, nowhere for somebody to step in. So my family had to take over, which meant that I couldn't get away from it. 19:43 I was here in the house with him and still seeing all the stress going on. So, yeah, it's rough. It's rough when you can't get away. 20:00 I mentioned right at the outset that Chantel and the telling of her story, it raised three issues. It raised that issue around respite and you desperately need it. And at best, you're on a, I was going to say a promise, a kind of a promise of maybe three days in September and no more than that. Yeah. 20:21 She raised the issue of residential care. That's what you're also in need of. And you've been told that is not available. There are no beds anywhere for Isaac. The other issue was was long term care. And that's what Rebecca was just talking about as well, that there is no plan that if you try to make a plan, you can't. 20:41 A plan is formulated properly. 20:45 In the moment, the moment of your passing. I mean, not to be too morbid about it, but I mean, have you thought about that, about what happens when Isaac doesn't have you there? 20:54 I mean, that's the emotional stress all the time ongoing. You know, what happens when I'm not around? 21:04 My husband's not around. Where does Isaac go? What does he do? 21:08 Because of his autism, he needs a gentle transfer into whatever service he's going into. So a future care plan for residential care needs to be planned carefully and transition happens carefully and controlled. 21:25 And basically, if my husband and I were not here tomorrow, that wouldn't be the case. And it would break, you know, all the good work we've been doing with trying to learn skills, relearn skills since the accident. 21:44 That would all be undermined. 21:46 And, you know, who looks after him? How do we know that he's going to be well looked after? We don't. 21:54 So when you express all of these concerns to people in disability services or elsewhere within the HSE and you say that this this is the situation we're in. 22:06 This has taken over our lives. 22:09 It is utterly dominated my life to the point that, you know, I've broken down myself and had to go and seek medical intervention. 22:21 We need help. we need help now, we need a plan in place in the medium term and we need a long-term plan in place. What response do you get? 22:31 Is anybody listening? 22:33 For when I needed the respite desperately last year, when that was a crisis situation for me, it felt like I was yelling to avoid. 22:46 That's what it felt like. 22:49 Nobody was able to give me any hope of any kind. 22:55 I mean, since then, you know, the respite, the disability services have, you know, started a plan for a respite. 23:06 But residential care, you know, we have no idea where he could go. So there's no plan in place for how to transition in the long term, let alone the medium term. 23:19 So, yeah, it's crisis orientated. by the moment is totally crisis orientated and even then the crisis response is slow. 23:33 Yeah. 23:35 Caroline is with us as well, Rachel and Rebecca. Rebecca's still on the line, I know, listening to all of this. 23:44 Caroline, what's the situation in your house? 23:47 Hi, Ciarán. Thanks for taking my call. 23:51 We have a daughter who is 36 years of age. Amy is her name. And just listening to Chantal, Rebecca and Rachel's stories, we all have something in common, even though our stories might differ in different ways. The one thing that we have in common is that as parents of adults and children, I always call Amy a child because she acts like a child. The one thing that we all have in common is, unfortunately, we have to air our dirty laundry in public to get some service. No other family would have to be put through what we're put through. 24:21 You know, we have to go on Live Live, we have to go on local radio stations to tell people our stories. We don't have to tell our stories about other siblings or other children if people have other children, but we have to tell the stories about those that have a disability because it's the only way to get services and it's the only way to highlight it. But the reason I emailed in after Chantal's story is because, like Chantal is starting out on her journey, her son Arthur is only 15. 25 years ago, when Amy was We had a social worker who came to our house and said to us, you know, don't ever put the burden on your two sons to take care of Amy because the stage will look after Amy, our disability services. 25:01 And 25 years later, we're in the same position. Amy's name is down for residential 11 years, if you can believe that, and on a social housing list for the last two years. 25:12 And the one thing that the HSE and disability services have in common in the government is Every one of us are already being drip fed information. You know, for the 11 years the name is on the list. I didn't know that she had to be on the social housing list until two years ago. 25:27 So and then I would like to commend Tony Murray and his wife Susan because they are the only people that have brought this to the forefront in the public eye for saying, you know, this Before We Die campaign and has really caught people's attention because of the headline. Because the government never gave us a second thought. Never. And from what I can see, they're still not giving us any second thought. Because, as the other mothers have said, there is no plan for our children. You know, I would like to have Amy settled in a residential home before I get too old to care for her. 26:00 She has a lot of needs. She can be quite complex. She also has epilepsy. She ended up in hospital at Christmas with status epileptic. So she had to be intubated and spend 10 days over the Christmas in hospital. She fell down the stairs two weeks ago because of an absence seizure. 26:16 Bruised all over her body, but luckily didn't break anything. And I'm just, like my husband is 60 this year, I'm 58. I just don't have the energy that I had 20 years ago. Amy has become increasingly, you know, not as challenging as Chantal's son. And it shouldn't be because one against the other. Everyone has their daily struggles, no matter what their needs, whether it is from mild, moderate to severe. everybody that's a parent to a child with special needs has the worry of what will happen to our children when we die and the government unfortunately from what I can see don't seem to give it a second thought because they brought in the congregation in the HSE nobody not one parent from what I can see was asked is this what we wanted a lot of parents don't want social housing because Karen if you know anything about social housing for adults and children with disabilities like for Amy on the social housing list, her criteria is a one-bedroom apartment. 27:13 That would mean maybe one to two staff with her, which would be very isolating for Amy. She loves social gatherings, you know, her day services where she attends in Cork. You know, they'd have parties, things for peers and whatever, you know, social outings. They go to flannery for food. They go to foster, you know, all these things. That's what Amy loves, and when she's in good form, enjoys them immensely. For a social house, for me, that's my worst nightmare, for Amy to be in a one-bedroom apartment with one or two people. For me to mind Amy on my own, and my husband is working on my, I once run away and once run here. 27:44 It's very challenging. She's very draining. And again, we have to give the worst case scenario and tell everybody how hard it is, you know, and we shouldn't have to do that. There should be a plan in place for all these people that are coming up through the system. The government knew all these children when they started in special schools. I know it's a bit different today to when Amy started, you know, there's kids in mainstream school with services and supports there. But the government must know some numbers, but nobody can give us the numbers except those in the Before We Die campaign who went looking for them. The government aren't giving us any information. 28:17 I'm glad you brought this up about, you know, going on Liveline or local radio because, look, it's one of the great privileges of this job is that we can afford people a platform to... Oh, look, I'm not... No, no, no. And it is. And I'm so glad that people feel they can come here and speak about it. But Chantel at a meeting, you know, with the HSE yesterday after being on Liveline... 28:42 I mean, if you stand back and think about it, that's mad. That is mad that somebody sits down with her to try and put a plan in place after she goes on national radio. 28:52 And we shouldn't have to be put to that. And like that, my sons, we have emailed TDs, politicians down through the years. And I'll give you an example. My son, who's an Australian, who was home last year, and you can see the difference in Amy, how challenging she has gotten and her epilepsy has gotten worse. 29:07 and she suffers terrible at her stomach so she doesn't have a good day she could bang her own head she wouldn't be as physically aggressive as arthur and again i don't want to make comparisons because that's not fair on either child but you know she can pull at me she can pull my hair you know she's she's attached to me we're like siamese twins only we're not sewing together she follows me everywhere and she has her challenges but my son in australia emailed the hse on our behalf and if you saw the email he's significantly outlined everything about Amy's you know challenges you know that she couldn't advocate for herself and he got back a very generic one like you know and we would look into it and then who was he to ask you know or to advocate on behalf of his sister now he's her sibling and he can ask anything that he wants to and he had put back in the email if you had read it properly you would see that Amy can't advocate for herself you know and it's you know it's biting and knocking on doors constantly and from 30:00 my perspective I think they just want to wear people down Honestly, I think they would think eventually parents would just get so tired because that's what we are. 30:08 We would just go away into the background and then it becomes a crisis situation, as Rebecca and Rachel said beforehand. And that's not what we want. We don't want that. We want the government to step up, not next year, not another government that comes in. We want them to step up today, meet with parents, meet with them, and not even just for a photo shoot. Meet them and make a commitment and be a heartfelt commitment that they are going to do something. It's gone on for too long and the only reason this has been highlighted is because people are doing it and that Tony Murray and his wife started this campaign. 30:39 It came to Cork. Sinead McGrath set up a Cork Carer Support Group and it has really gathered momentum. But we have, we waste a lot, not waste, sorry, we spend a lot of time and energy minding our children. 30:51 Yeah. 30:51 We shouldn't have to spend all our time and energy fighting a government that doesn't want to listen and a HSE that, from what I can see, doesn't really care. 31:00 Tony Murray is one of those people who got in touch with us, actually, and we're going to try and find time, absolutely, to speak to Tony as well on the show today. 31:10 And look, I know individual people working in an HSE who... 31:14 who, you know, deeply care about this and they would like to solve some of these problems. But I understand, like, the frustration. 31:22 Well, of course, but as a whole, from what you can see, from what you're dealing with then. I mean, we have the case, Ciarán, in Cork with the lady who, again, and I presume there is more that probably want to do it and feel like doing it. I've often felt like doing it myself. Going to the A&E and handing over your child. To put people in that position is absolutely criminal. On every level, it's criminal. How can you put someone in that situation that they feel they have no other option? 31:45 It's wrong on every level. It's an undignified way to treat the child. Because that's what Chantel kept saying, that she wants dignity for Arthur as well. And like you with Amy as well, it's not dignified to have her in a situation where she's falling down the stairs or she's banging her head off a wall and she's getting injured and she's getting hurt. When if she was being afforded the care in the right setting, those things wouldn't be happening. 32:07 No, they wouldn't be happening. And because, as I said to your researcher, I feel because of their disability, because the parents that mind these children and look after them 24-7 with all their love and care, I feel that they're treated like second-class citizens. This is my opinion now, because 36 years I've been doing it. And I really do think they are being treated like second-class citizens because a lot of them don't vote. A lot of them don't vote. And a lot of the parents are suffering from burnout. I have been in situations like Rachel where I've just wanted to give it all up. 32:39 And you shouldn't be put into that situation. And my final point is, like, in Cork they discovered that there was, I don't know the exact number now, huge amounts of parents in their 70s, 80s, minding adult children. If you went for a job in the morning at 75, there'd be nobody to give you a job to do that. 32:54 Yeah. 32:54 Do you know? But yes, the government thinks it's right that parents can continue. And with all due respect, I don't think I could give Amy the care that she needs today or in 10 years' time. because she's become so challenging and because, you know, she's hard work. So I would like to think that I could have some sort of shared care where if Amy had a residential home or her own home, that she can come home for a certain amount of days and go back in. And that, for me, would be a dream come true. And I think it's a dream. It's something that a lot of parents... strive to get and want to get for their children. 33:25 And I think the government needs to sit up and listen to us eventually. 33:28 It's only a dream is what I'm learning for so many people, not a reality. But Caroline, we're going to stick with this issue. I'll take a very short break. Back in a moment. 33:50 0818 715 815 is the number if you want to give me a call on this or you can message on WhatsApp 087 484 888 and Rachel, Caroline and Rebecca all before the break were talking to us about their own situation as parents of children, adult children in most of those situations and circumstances of with additional needs or intellectual disabilities. And this is all on the back of Chantel, who spoke to us last Thursday and elicited a huge reaction. 34:21 And amongst those listening was Deirdre Joyce, who is on the line as well. Deirdre, when you were listening to Chantel, what was going through your mind? 34:35 Yeah, hi. So my brother Brian, he's 44 years old, non-verbal autistic. 34:43 And hearing Chantal speak about her current situation late last week, while the details are different, several aspects of this resonated profoundly with my family's own lived experience. It breaks my heart that almost 30 years later in 2026, families are still struggling to get access to the essential services and the support they need. And since 1998, Brian, when he was 16, he received an actual place. And he now resides at the John Paul Centre in Galway, a cluster campus style setting. 35:16 And my parents secured that placement after a huge amount of blood, sweat, tears. Yeah, and her story just shook me to the core. I felt immense empathy for her, for Arthur, and especially actually his brother, who are navigating a similar path to us. I remember so clearly the emotional toll it took on our family. You know, Brian's volatile, sometimes violent adolescence sticks with me. You know, one memory stands out, having to lock myself in my room during a fierce tantrum, praying he wouldn't harm my parents. 35:49 And when Brian eventually received his placement, you know, our home was filled with a complex mix of emotions. For my parents, it was a moment of profound sadness. Like Chantelle, they never wished for their son to receive. 36:02 require full-time care yes they were utterly exhausted having reached their limit in providing that care at home but personally as a 12 year old at that time i felt an overwhelming sense of relief of the prospect of him no longer living with us and the hope for normality in our house however you know having those feelings towards my brother who couldn't help how he was brought a deep shame to me which i which i carried for years um and yeah beyond the daily care you know the state also deemed Brian ineligible for an education and my parents also courageously challenged this in the High Court also in 1998 and thankfully he was granted the support he so desperately needed in this respect too albeit quite late in his development it was another big victory in getting the state to recognise his rights so from the very beginning my parents have fought tirelessly for him and they've had some progress along the way however I wrote to you because they are in their 70s with a son with severe intellectual disability in his 40s and we do continue to live today with multiple concerns and worries 37:07 about his future, particularly for a time when my parents are no longer able to be there for him. 37:14 I'm sure, Deirdre, it wasn't just you and your siblings, I'm sure your parents had that 37:22 sense of relief mixed with shame I'm sure they did you know at the time I watched them so sad and I you know I had that mix that I was sad too but I also remember feeling relief and then feeling like I shouldn't feel relief you know because yeah you know it was it was so hard to see him go as well in another respect and not live with us anymore but from my 12 year old perspective I It was just, yeah, finally a breath. You could breathe. You could start potentially to kind of live a normal life. 37:56 So, yeah, I mean, fast forward to today, you know, it brings me to the, it's been brought up already, the Before We Die campaign. I've been following their work very closely from where I now live in the UK. 38:09 And of the eight crucial demands that they all resonate so deeply, but three of them are front of mind for our family at the moment. One is appropriate models of housing, which I can go into a little bit why that's a concern for us now, because it does sound like we're in a good situation, unlike thousands of families across the country. 38:29 The second is local proximity safeguards, and the third is actually the problematic 2017 Capacity Act that's in desperate need of reform. 38:37 I can go into all that, but I'll just take a breath, sorry. 38:40 Yeah, no, before we do... I'm racing ahead. No, no, no, not at all, but I'm just... 38:46 I'm just conscious of your brother as well. And to what extent moving into residential care allowed him or afforded him the dignity, you know, that Chantal is looking for Arthur. 39:03 Absolutely. So if we think about where he is now, John Paul Centre, it's been his home for 30 years. It's a campus style cluster setting that has allowed him to thrive. He has independence. He has individuality. He's a very social being. You know, despite being severely autistic and nonverbal, he does actually love being around other people and he's fully physically able. He's an active part of the Galway City community where my parents live. He has a bus pass. 39:29 There's wonderful caring staff there that regularly take him, for instance, to the Saturday morning park run nearby. And that's on a weekly basis. He can often be seen walking the Salt Hill Prom, which he loves. 39:39 My parents also take him home three to four times a week during the days. And just this past weekend, he actually was in Dublin with my parents who are both proud male people. And they stayed with my brother, his wife, my niece to celebrate a historic win. 39:56 We as a family and the wider support of our family, wonderful friends, local Galway community, we've raised significant funds over the years which have invested in shared services at that centre. They have shared buses, they have a swimming pool, a sensory garden. We have actually what so many families with children who have children with intellectual disabilities across the country wish they had. 40:17 He's placed in an appropriate cluster of homes model with safe, appropriate on-site care. However, we are actually now facing a stark and cruel reality because this is now being challenged. They are proposing to relocate him quite fast. To where? So today, we've actually had no formal consultation. We've had no official letter, nothing specific. We've only learned through staff that a house has already been purchased down a country road outside of Galway City in rural East Galway, far from our family home. 40:49 We've also seen reports in the media that the Galway Hospice will be moving to this Brothers and Charities site. 40:55 And in fact, just this morning, we've been invited to a meeting to discuss this by the centre for the first time. Now, this isn't just a minor administrative matter. It is complex and it's deeply concerning for us. There's first of all, a clear safeguarding concern for Brian, who's nonverbal. This proposed rural house on the east side of Galway is isolated, has no access to public transport, footpaths, local services. It would actually cut him off from the community connections he currently has. and place him far away from the people and the places that give his life meaning, including his visits three to four times a week to our family home in Galway City. 41:31 They're saying it's living in the community, but really it can't reasonably be described as that. You know, to quote Tony Murray of the Before We Die campaign, this is kind of a new, more frightening form of institutionalisation where distance replaces physical walls. I've heard him say that and it's resonated completely with me. 41:48 And we support the go-away hospices need to expand, don't get me wrong, but we're just concerned that Brian's displacement, amongst others, driven by this project, is proceeding without family involvement and consultation. 42:00 The positive media attention that's been on that expansion actually overlooks the unacknowledged displacement of long-term residents like Brian, who've lived there for 13 plus years. 42:11 The HSE, this has been their policy for, I think, about 15 years, the time to move on from congregated settings, 2011. 42:19 And we can talk about that in a moment, but... 42:23 Even if you subscribe to that view and think it's a good, you know, it is a sound policy and we should be doing it. I mean, the policy is about moving participants from congregated settings to the community. 42:34 I don't know Brian's situation, but it just sounds like he's in the community and actually he's been moved off out the country and he's going to be shut off. 42:42 Absolutely. And, you know, moving someone like Brian, who's nonverbal to the country, you know, like I said, it raises sense. safeguarding concerns but also it's not the same as someone else deciding they want to quit the city and move to the country and get some fresh country air and some peace and quiet it won't be it won't be that for Brian it will be actually isolation and further away for my parents who are ageing who you know maybe in the future may not be able to drive to go and see him and won't be able to see him as often you know he won't be able to walk literally out of the centre there's a bus stop that takes him into town and he regularly does that with supportive staff you know so it's 43:20 It sounds like we're making Brian's quality of life worse just so that a box can be ticked that, yes, but this subscribes to the policy. So I know it's making his life worse, but this is policy. 43:32 And also the government are now reviewing that policy of decongregation, right? So it's actually up for review at the moment while they're pushing ahead with unsuitable alternatives and, you know, saying that it's under this policy. But actually, one of the demands of the Before We Die campaign is these cluster of homes models that he's in. It's fully appropriate. It's safe. 43:56 It's what he needs. So, yeah, I mean, we've actually raised this with several local TDs as well, you know, as a concrete example of HSE Disability Services failing to properly involve a person with intellectual disability in their family. And they are shocked and they have offered us their support, which is great. 44:14 But it's, yes, it's an illustration of how actually you can be in a good situation and then out of nowhere it can all turn on its head, you know. And I feel like my parents have been fighting all their lives for various bits and pieces for Brian. And, you know, I don't know if we time, but there's another big, big issue which is highlighted by the campaign as well. And when we face directly, it's the 2017 Capacity Act. because making decisions for Brian under this act is also hugely problematic because he's in a residential setting. 44:50 My parents cannot automatically make decisions for him at the moment. And for them to be granted this right, it would be another day out in court 30 years on after their high court case win to his right to education in the region of 10,000 euro costs, which is just absurd to think that we might have to go there as well. 45:12 But, yeah, that's also, you know, in parallel to what we're also now thinking we have to fight in terms of where Brian may end up and where he's going to live going forward. 45:25 So, yeah. 45:27 We got on to the Department as well, Department of Children Equality and Disability, about the provision and planning of residential services and a lot of different things. 65 million euro increase in this year's budget. 45:42 which will translate to 152 new residential placements. They say since 2020, over a thousand additional new Priority One residential places have been provided for people via HSE funding. They talk about working closely with local authorities to improve forward planning. and provide additional capacity. They talk about a 20% increase in funding for disability services, 60% of the funding going to disability residential services. So, I mean, nobody's suggesting they're doing nothing and all of that is to be commended. And this might sound like a trite thing to say, but it's not enough. 46:15 And nobody who listens to Liveline today or was listening to Liveline last week could listen to those list of accomplishments and say, well, obviously that's enough. Not when they hear your story and Caroline's and Rebecca and Rachel's and Chantel's and everybody else who's been getting in touch with us. And I know Tony Murray from the campaign as well has been amongst those getting in touch. And we're going to speak to Tony after this very quick break. 46:48 Get in touch on WhatsApp 087 484 888 888. 46:56 Liveline at rte.ie as well as the email address and Tony Murray is on the line and Tony's been mentioned by quite a few guests already because he's chair of the Before We Die campaign. Tony... 47:12 Briefly remind us, because I know this campaign actually was born out of you being on this show. Remind us of your own situation and what it is you're campaigning for. 47:23 Hi, thanks for taking the call. 47:25 Essentially, when I turned 70 and Aoife is 42 now, and you realise, and I've said this so many times, it's not if something happens, but when something happens to me. It's not if anymore. It's 71, it's not if, it's when. 47:42 and you realise that there's absolutely no plan in place for FIFA. 47:49 I started saying at the beginning of the campaign that the government have no plan to have a plan. 47:55 I'm now revising that. I think they have a very definite plan, an absolute definite plan, and we have evidence to show what their plan is. The plan is to leave it to the parents or siblings and wait until we die and there's an emergency, and then they'll step in. That is fair. 48:13 And I can back up that plan or that contention, which was mentioned earlier when the mother left her daughter into the A&E in Cork. Like no parent, you wouldn't do that to a dog. No parent should be so broken, so on their knees that they would do that. 48:34 The guards were called, HSE officials like pushed and bullied. And then they wrote her a letter. Now, this letter is absolutely frightening and has never been withdrawn by any government minister. It's been brought up with the Taoiseach, Norma Foley, Emer Higgins, Every TD, various Dáil committees. And the letter states to the mother that there is a legal obligation for parents to support their children financially if the child is a dependent. 49:07 Okay? 49:07 Mm-hmm. 49:08 This applies to all children to age 18 and 23 if in education, but indefinitely if the child has a disability. Accordingly, you are legally obliged to support your daughter and that includes the provision of accommodation. That basically is the HSE and the government, because they won't say what law is being cited here, is saying to parents you are legally responsible to provide accommodation, which is the huge issue, indefinitely. 49:42 There's no other group in the country who has that letter hanging over them. 49:48 And when we raised the campaign and we met the Taoiseach, all the various ministers, and got a great amount of publicity, the Taoiseach said in the Dáil that there was a Cabinet Committee on Disability. It was announced by the Taoiseach. And we were hopeful that at least at last now that it would be an old government approach to this problem. 50:11 So we decided, well, we let them see what happens, let them come back to us and see if they come back with a plan to have a plan. So eventually we got a parliamentary question raised. And the answer to the question was, to date, the committee has considered issues, including the new national human rights strategy for disabled people, the provision of therapies in special schools, improving the delivery of services and reform of the assessment of needs. No mention of residential. 50:41 None. 50:42 So after all the publicity, all the heartbreaking stories, and as one of the mothers said, said, said, you know, we have to go on national radio to tell our story, to expose our private lives, to say how broken we are. And that's the response from the government. So unfortunately, it's not it's not a good picture. And in today's Irish Times, as you might have seen, there's a HICWA report. So even when you do get residential, reading the HICWA report in the Irish Times today would frighten the life out of you. 51:16 And that's a HICWA report. So what's happening is that even when you get residential, as also the last caller, Brian, now when it's perfectly fine, working well, everybody happy, and it suits Brian, then they're just fisted away out of him. And it's been mentioned a number of times, the Capacity Act. Under the Capacity Act, and people don't believe this, and even politicians, everybody over the age of 18 has got full capacity. 51:48 Our daughter, Aoife, is the equivalent of a four to five-year-old. But in law, she has full capacity. 51:56 So parents are locked out of any decision-making because Aoife has full capacity. 52:03 On the GPR, they will tell us nothing. 52:06 And then on the other hand, they're saying Aoife has full capacity. But on the other hand, we are legally responsible indefinitely. 52:16 Like, it's absolutely appalling, this double think. So if we're legally responsible, we should have a say. If Aoife has full capacity and she needs residential or day service, well, then let the state take it over. So essentially the state is having it both ways. And that's the appalling vista which we face. And the numbers, I mean, if you want to sum up the problem in one sentence, it is that the state is not planning, not counting, and not delivering. 52:47 They're not actually counting how many people have a disability who need residential places. We're counting them, and the numbers we are getting from the CSO are vastly different from what we're getting from the HSE. What numbers are you getting? Well, for instance, I'll give you an idea. 53:07 In Cork, from the CSO, there are over 2,314 adults with intellectual disability being cared for at home by parents over 70. That's 2,314. 500 of those are over 80. 53:24 But when the government gave you that word salad or the HSE gave you that word salad, we're doing this, we're doing that. The reality is, for instance, in the Cork and Kerry CHO, that's the health board region. There are 390 people, like adults, living at home with parents over 70 in the Cork area. That's 390. 53:50 The planned places that the government say we have 72 planned places That's 12 in that number. So that brings it down to 378. That's not... That isn't even starting to address the issue and the problem. That's 12 out of 390. It's 378 in the Cork region. And I'm using the Cork region because people have a good idea of geographically what it looks like. 54:17 They're just living in the crisis that we've heard about on Thursday and heard about today. And the government... hasn't even put it on the agenda of the special committee, the cabinet committee, I mean. 54:31 So where do we go from there? Is it an ideological and a reluctance to invest again in, you know, there was a time we... 54:45 too many people were put in residential care in Ireland. 54:48 And we all accept that. The highest kind of incarceration rate, I think, in all of Western Europe at one point in the 50s and 60s. So there's a big pushback against it, an understandable pushback. And is it a hangover of that? 55:00 Or is it something, is it just the way the state has always operated? They essentially, you know, they outsourced education to the religious orders. They outsourced the health system to the religious orders. And they outsourced disability services to mum and dad. 55:15 Well, it's even worse. They've outsourced it now to private for profit companies. And as the first caller mentioned, what will happen? And this is what will happen. It's not might happen. This is what will happen. So when Susan and I, my wife, Susan and I are no longer able to care or dead. I mean, that's the reality. 55:34 Within a four to six week period, Aoife's care package will be put out to tender to for profit companies. So within that very short period, Aoife will have lost her mum and dad, her family, her social circle, her day service, and will be put in a house anywhere in the country with total strangers for a private company to make a profit on. 56:02 And Liam Quaid in the Dáil has raised this issue, and the figures that he received is that there are 193 people with ID are placed in residential care more than 100k from their family home or community. So they line in the sense that we're replacing high walls with kilometres. Effectively, they're putting people in isolated rural areas where land is cheap, where the for-profit companies can buy houses. 56:33 And in one case, there's a house in Allenwood. Now, we got these figures from the HICWA reports. There's 17 in the house. It's 18K from NACE. So if you're an elderly parent who doesn't drive, you can't get down there unless you get a bus to NACE and a taxi from NACE to Allenwood. There's no public service. 56:53 Yeah. And as I should just say as well, like, you know, we're talking here in the context of of of parents as primary carers passing away. And as Deirdre was was talking in the context of Brian, it You know, in that situation, nobody has passed away. Brian is still being moved and still being isolated. He's in a congregational setting. The policy is to shut them down, despite the fact that it is worrying. Thriving is how Deirdre described it. It's the word she used to describe Brian in that residential setting. And they're putting him up a kind of a boring outside Galway where there's no public transport and is essentially going to be a prisoner in a home that he has never set foot in. 57:29 for the rest of his life. So it's not just in the context of people passing away. But 0818715815, just to remind people if they want to join the conversation of the number. Tony, we'll take a very short break, so bear with me. 57:54 Liveline at rte.ie as well, the email address and Finola O'Riordan on the line as well. Finola, what's your situation at home? 58:04 Good afternoon, Ciarán. 58:05 Afternoon. 58:07 Well, myself and my husband are both in our 70s and our son Barry is 33. 58:14 Barry's on the autistic spectrum. Now, in our case, we are lucky he has no physical disability. But he does have needs, very special needs. And like any parent, we just want a safe and secure future for our son. 58:35 But unlike most of my friends or most parents, it's more complex in our situation and in those of the parents you've been listening to. Because it's not just a matter of providing somewhere to live, like an apartment or a house. 58:52 And as we've heard from other parents, our children, our children with intellectual disabilities, they need a social setting where they're comfortable. We would not want Barry living on his own, nor would we want him isolated from his local community where he feels safe and where he can commute to his daily service provider. 59:17 Barry would need a limited amount of care put in place and you would need help with things like cooking, shopping, laundry, shaving, you know, buying clothes, things like that. 59:35 We have Barry on the housing list, the Dunleary-Ratdown housing list since 2017 because luckily I was advised to do that but there is no sort of future, there's no plan, there's no indication that he's heading towards a residential care plan. And as Tony said, like, our future is inevitable. There's no turning back the clock. You know, so we're quite anxious. 60:07 You have a very clear idea of what Barry... 60:12 will need when you and your husband are no longer here. You've just gone through it. You know what I mean? He needs to stay in his community. He will need some supports. He doesn't need, the way it sounds, I kind of, you know, 24-7 kind of people hovering over him. But, you know, help with the shopping, help with clothes buying, help with some hygiene issues and all of that. 60:31 Yes. But there is no way for you to put that plan in place. 60:37 No plan is put in place until you're actually no longer around to answer those questions. Yes. 60:42 Exactly. And, you know, privately, you cannot provide this going forward because you need the care assistance, the people coming in maybe once a day, you know, to support their living. So ideally, I would love to see Barry either in a community like, well, like Brian is in, dear to son, brother Brian is in at the moment, But in the area, within 10 miles of maybe his own area, Barry, like a previous listener's son, is able to travel with a bus pass. 61:25 He has independence. He does a lot of sport. He gets involved in a lot of different activities. And he goes to a regular day service in Dun Laoghaire. 61:37 I would hate to see that all taken from him. I just could not bear it. 61:42 Is it not lunacy on some level that nobody asks the question, what will Barry need, until the two people best poised to answer that question are dead? 62:00 Absolutely, Ciarán. They're not asking the parents what we need. 62:04 They're coming up with bureaucratic plans which say, you know, that community living now is bad. Now, in the past, we all know the type of community living in the 50s and 60s may have been bad. But, you know, what Deirdre describes sounds idyllic to me. 62:24 Yeah. 62:26 You know, it's going the way of the dodo, according to the HSE, although they're reviewing that. But while it's being reviewed, they're still closing that place down and moving poor Brian out into the country. Sorry, you know, I just want to bring in Aisling on this as well, because she's been waiting in the wings listening and Aisling. 62:46 You know, we've been talking about plans being put in place, you know, after primary carers and so often the parents have passed away. 62:55 That has happened in your situation. Your parents as primary carers passed away. And then what happened? 63:04 Just even to give you an idea of how common a problem this is, I know Deirdre. I know her mum really well. Her mother was my mother's best friend and her mum sends me a birthday card. I didn't know Deirdre was going to be on when I started online. 63:17 Her mum sends me a birthday card every year because my mum can't. So basically in 1998, so last century, Our dad died at 39 from cancer. And then in September 2010, me and Niamh, it's just the two of us, we learned that mum had breast cancer. And Niamh turned 18 that October, so one month later. And Niamh had had some respite and things like that. But no one made any plans for her when she was an adult. 63:49 And she was never in a mainstream setting. She had had one parent since she was five. 63:55 And, yeah, they cut all her respite. Her day services or her child services adult service person refused to take her on because her address switched her over to a Galway service. Someone came into our home and told our mum who'd lost her husband to cancer and she having cancer, illness doesn't come into it. When it came to about me getting some respite back. 64:22 So Mammy beat breast cancer and then it came back in 2016 and she died of it in 2018. And Niamh got a night respite in 2024. 64:33 And then in September... 64:35 Sorry, sorry, Aisling, sorry. From 2018... But my aunt helped. When your mother passed away from 2018 until 2024, your sister got a night... Me and her sister, my aunts. 64:48 Never, never, no. 64:50 Never. Even I was a bridesmaid the year before and my aunt who has taken it upon herself to come out of retirement and live with me and do the day-to-day care I can't do because I'm a teacher and school is on during the day. 65:03 We were going to be at that wedding. We gave them plenty of notice and what happened was nothing was sorted and an amazing family friend who takes me out for some evenings and afternoons, she arranged that literally one of her own children slept at their grandmother's house so Niamh could sleep in their house so we could have two nights at my cousin's wedding where I was bridesmaid and my aunt was aunt of the bride. 65:28 Yeah. 65:28 That's how, like, I want to warn parents who are listening. You can give them so much notice. They do not care. I was listening to you as well and you were saying, like, is this old-fashioned? Basically, my sibling, Niamh, is a non-voting, non-tax-paying expense to them. And I say this because when Niamh went into a coma because she... went septic from pneumonia. 65:51 Yeah. 65:52 In September 2024, she was in a coma for three and a half weeks. She had to be transferred from Banlisloe ICU to Galway ICU and back to Banlisloe ICU. She was hospitalized overall for 10 and a half weeks. Neve hasn't been assigned social worker. So your child could be in a coma. They won't have an assigned social worker. You can be on your deathbed. You can have terminal cancer. When mum came back, it was stage four. It's, within her abdomen it spread to the brain by the um they will not provide residential and they won't even provide respite your other children are the plan and if they won't be the plan then as tony has highlighted they get sent elsewhere in the country um you know i'm a teacher i can't work from home and frankly i'm not qualified to fully manage any say or epilepsy medications and that and um 66:47 Yeah, just me was never in a mainstream setting. Daddy died when we were seven and five in 1998. 66:55 And no one thought, oh, the widow, who now has cancer and who we've never put an adult package together for her child, we're going to kick her out of our day services. Hope one of the services in Galway will take her. All her respite was cut. I suggest extensions to complete my teaching course paperwork because I couldn't say bring copies home to correct them, leave them, I try and colour them in, but giving feedback is something you are judged on when you're completing the course, just Yeah, I'm not exaggerating. 67:26 Sorry, I'm slightly speechless, Aisling, because, you know, there's been an assumption and I suspect some parents listening to this who are primary carers are speechless too because they maybe assume that, you know, after they're gone, while it's too late, a plan is put in place. But it sounds like in your case, after your, well, your father died very young and then after your mother passed away, there was a view that and maybe no one person's view, but the system's view, we don't need a plan there because Niamh has a sister. Just let the sister be the primary carer. We don't have to worry about that. 67:58 I absolutely believe that is what happened because say when mum got sick again, she was diagnosed in September and I decided I'm not going to apply for more schools this year. I want to spend time with mum. I knew it, like when it reoccurred, we knew it was stage four. And I just, you know, I lost daddy quite young. Our family's quite small. That was my decision to care for mum. 68:18 And then the following year, mum had, it had spread to her brain. So she'd get radiation done up in DCU in Beaumont, and she wasn't out to drive after that because people... Yeah. After that, had the radiation plant to have their license for safety, which was fine. 68:34 And then that kind of rolled into my aunt. I got a grant approved about three months before mum died, and then they set up a situation where my aunt was a home share... mind her apparently she's not really their employee according to them because i've been highlighting that my aunt is also getting older and this wasn't her retirement plan especially after neve was in a coma she came home incontinent weak on her feet hasn't even an assigned social worker um and as deirdre's highlighted you might have something and they'll take it away neve had 18 nights respite when we were kids like i had these um problems having a place to study when i was in leave insert And Niamh has had a social worker before. 69:17 She didn't have one when she came out of hospital. 69:20 They can take things away. And I really want to highlight that to parents as well. 69:24 If I know, like I'm a teacher, if I know that one of my students has a sibling who's special needs, I start worrying about them. I think about now, have they a trade they can immigrate with? Like, that's what my mindset has come to. And just say also, Daddy passed away in the Galway Hospice. This thing of pissing, you know, oh, say if Deirdre and the rest of the family caused a fuss, it's like, oh, well, don't you want people on hospice care to have somewhere to go? And it's like, yes, so please build a building or a second story onto Galway Hospital. 69:55 How many people have said it throughout the show, Ashley? It's not one or the other. Do both. Do both. Provide care for both in a situation like that. I'm just conscious of time because we're out of it and I'm just conscious as well of the amount of people I didn't get to and I suspect this cannot be. It cannot be the only time. how we talk about this issue. So thanks, everybody. 70:21 Today's show was produced by Richard Stern. 70:35 Dave Gibson was on sound. Richie Byrne was our researcher. Louise Duffy is up next and I'll talk to you tomorrow. 70:43 Live Line on RTE Radio 1. 70:46 Sponsored by Harry Corrie. Summer's here. Spruce up your bedroom for less with our sizzling summer sale offers at harrycorrie.com. 70:55 0818 715 815 stays open until 3.15pm or email live line at rte.ie.