Martin Daly on ageing carers and gaps in disability services

Thanks very much, and I apologise for being late. I'm on the Health Committee as well. It's really interesting, the living piece for people with disability with special and additional needs. One of the areas I find really difficult to use, I'm a GP on the ground as well, is with parents who are getting older who have carried, and they don't see it as a burden, but it's very difficult not to describe it as a burden of care with insufficient supports in services, community, health, educational, over the years, especially if their kids are now in their 50s, is that there is no planning for a seamless transition into another form of living other than at home. So, yes, we have to take into account autonomy, and what they want in that, but these are very particular circumstances. I have a mother, and I've brought it up at this committee again, who has presented to me with her 45-year-old son, who has neurodivergence, generalised anxiety, inadequate access to mental health services. In fact, he's been cut off by them after nine years attending, because he didn't make two appointments, which is beyond my comprehension. And is that she has asked to be admitted to a psychiatric hospital herself, because she can't cope anymore, she's a widow. So, is there any commentary around that? Because, to me, I think that's one of the biggest challenges we have going forward. Yeah, I think you can take that, and you said that's a re-reference in the statement, and we are cognizant. There are over 2,000 adults living at home with parents over 70, and a cohort of those 500 parents are over 80. So, these situations are not uncommon, which is unfortunate. And I think the point we're making in our statement is we're at a junction now. People are ageing, really, and being supported to age well. We've made comments how they can be supported better throughout life, but there are individuals now, and we need to look at increasing, through innovative service provision and research-based evidence, good solutions. And I think, collectively, as a sector, with the HSE, we need to practically go on a journey to create those solutions and create new pathways and options for individuals in that situation, so that can be proactively developed. But it's a new positive challenge for the sector, but we need to embrace it, and we need to move forward. I think, on that point, in relation to community infrastructure and access to services, which I think is really important, in our systems, when we work with GPs and general adult psychiatry as opposed to specialist psychiatry, the understanding of somebody not attending two appointments may be for very good reason and may not fall into the same catchment as if I didn't attend to two appointments. I think we need to look at our education of those different disciplines to make sure that they fully understand disability and can meet the desired need of people with an intellectual disability. And I think that bridging that gap between practice and actually implementation of what community infrastructure looks like is really, really important. I suppose, did you want to say? Yeah, it's a more philosophical component. It's not going to respond to your patient's need right now. But I think, as a state, we have to accept that 45-year-olds don't generally stay living at home with their parents, OK? And that paternalistic approach that parents often have from early on is that I must care for until I'm no longer able to care for them. And so we're denying everyone in that household their human rights, OK? And if we could do something as a state, and it goes back to the recruitment discussion, I just think an overall discussion around what does UNCRPD really look like in practice? It's recognising families, you don't have to do this. And for her son or daughter, maybe there were things that could have been done 20 years ago that would have promoted not a residential place, but maybe something that is in a home support model with minimal financial impact for the state. But ultimately what will happen is he'll end up spending 40 years when she's gone and not able to do it anymore, and a crisis happens, in a really high-cost placement that may be not reviewed. And actually if you had looked at that across 60 or 70 years, there would have been savings. That's our experience. My experience is if a parent dies, it's sorted within 10 days. You know, something that has festered, and I will use that word chosen, festered on for 20 years or more. And you're right about a menu of different services because, you know, I have another patient who essentially what he requires is support in an independent living, sort of like a superintendent flat, someone who would help him pay his bills, TV license, get his phone up, get his Wi-Fi sorted, and that he would have somewhere and would help him with the shopping. He can live independently. He goes to the pub for a couple of pints. He comes home. But, you know, we really do have to think much more broadly about it because a lot of people who are living with additional and special needs and complex medical needs are living longer. So they are surviving into late adulthood. If we even just take Down syndrome, the increase in life expectancy over the last 30, 40 years has been considerable. So it's something that we need to take on. You mentioned catchment areas. I mean, it just appears to me that in the area of mental health, in the area of disability, and that we have no choice in every other area. If someone, I send someone to Banal Sloat to put it into a hospital to the cardiologist, they don't like the cardiologist, any, whatever, they can say, can you please send me to Galway or to Dublin? I'd like a second opinion. It doesn't happen in the area of mental health or disability and often in primary care services for the people of the least resources. Have you any comment on that? I think it goes back to that, the famous word resources in terms of ensuring that people do have access and have sustained models in those areas. So if we do have the right, you know, there's a national model for mental health and intellectual disability that's been, you know, since 2019, I suppose, and then 2020 with sharing the vision coming about. And we talk about specialist intellectual disability services within that sharing the vision policy. And yet, if we look nationally, we still have inadequate resourced national intellectual disability teams. where we don't have access and I don't have the ability, you know, to go to it. I can't say I want to go to Wexford to access that service or I can't go to Galway. I have to stay within that catchment. And I think we need to look at that on that national framework and see where are the gaps, what are the resources. We look at per 300,000 population, we say that we should have an intellectual disability specialist mental health team. And yet, we're on those in some catchment areas, particularly in our own area, we have consultants. We don't have the clinical nurse specialists on those teams. We don't have the OT, the SLT. And we've all spoke about the importance of communication. And if somebody has a mental health problem and also has an intellectual disability, it's so important that they have a voice on that. And at the moment, those teams are not nationally supported or fulfilled. There's vacancies on all of them. So we need to look, I think, back to that sharing the vision in 2020. It follows on from, you know, the 2006 vision for change. We still haven't fulfilled the posts on those things. Thanks very much. I'm out. I'm out. I'm out. I'm out. You.