Martin Daly urges independent advocates for disabled children

I apologise for being late, I've read the statements, I thank you all for coming here today, I'm on the health committee, I keep saying this over and over again, I'm on the health committee and it clashes. Just I suppose a general commentary around an independent advocacy service for children with disability. It's my experience that families, parents, parent, dealing with the various agencies of the state have an additional burden to carry, in addition to the 24-7 care, which is often a lifelong commitment, filled with apprehension about the future, they have got to negotiate what should be the rights of services for their children. I've seen examples of this, with the best will in the world, when you're dealing with, and I would say this because I've said it on the floor of the Dáil, for example the HSE, where I have a 16-year-old who has been inappropriately placed in a care home, costing the state 750,000 euros a year, where he has been admitted on repeated occasions with head injury because of head banging, because he's triggered because of the inappropriate atmosphere he's been placed in, and his parents simply are faced with a miasma of obfuscation, ineffectual decision-making and sometimes no decision-making and a paternalistic approach to them. And they are beginning to make some progress because we have made interventions and I will pay tribute to the Taoiseach's office in this regard, they've gotten involved in this case. But this is a recurring theme over and over again, where parents have been asked to deal with different agencies, it could be CAMHS, it could be CDNT, it could be HSE, it could be primary care. I'd be happy to hear your views on that. Absolutely, and that's why we commissioned this research and worked very closely with our colleagues in CDLP in Galway, because we were seeing that and we do see that every single day, with children, families calling us and saying that they are left alone to navigate all sorts of complexity and the effect that that's having on their right to a family life, which is just what people want and need and deserve and should have the right to, just to be a family and to just assume that you can get a certain amount of support when and how you need it. And many of the families that we work with have been holding up a red flag for 5, 6, 7, 8 years before things really go into crisis mode. And if you trace back the stories to what was being asked for 5, 6, 7 years ago, it was often, could we just get a couple of hours of home support after school on a Tuesday, because I need to go visit my elderly mother, and that would just keep the family on the road for now. Could we just get this small amount of support that would make a meaningful difference in our family life, because we love our child and we want to be a family that stays together. But over time, they're not getting those two hours and then they're not getting access to the school place and they're not getting access to CAMHS ID teams, all of it layers up and adds to that stress in families. So to us, again, the advocate cannot resolve all of that, but again, it's part of that system of support that should be available. And there's other parts of the system that should and could be there as well, such as access to a family support worker. Children and families should be linked into their local family resource centres. There's all this ecosystem of supports that should be available. But when you're navigating all of that complexity, suddenly you're very much on the outside of all of those natural supports and battling against a system that seems impossible. If I could just very quickly add to the broader framing of that. We recently conducted a national survey with our community and we asked about public attitudes and people's engagement with different services, and we found that over 80% agree that attitudes from wider society are a barrier to families' children having the same opportunity, be that socially or accessing services, as anybody else. And Deputy, before you came in, I mentioned that there's a significant trust deficit in the same survey. We found that 93% of families believe that the government don't listen to them when it comes to budget decisions, but more broadly as well. And when you read those two figures together, it just speaks to that wider societal and political marginalisation that those families feel. And alongside that, in tandem, a separate question in the same survey also asked about delays in services, and it was approximately 60% had experienced a delay. So read together, along with case studies, it's not unreasonable to see a causal relationship between all of that, and I suppose that's where the rights-based framing comes in as well, where it instigates that culture shift in services, in political circles and understands why this is needed. It's interesting, that family, the mother's going to give up her job, they're going to build an extension on their house at their own expense, and they're offering to provide the care in that home for half the budget that the HSE are getting. And they're not being asked to set up a healthcare company in order to access the funding, all sorts of crazy stuff. And another young mother who is a teacher, who's giving up her, and has a child with complex medical needs and disability, has spent six weeks at this moment in time negotiating on her own with the HSE for a proper care package to bring her son home. And when you listen to her on the phone, it is a constant wearing down of her by various agencies. They don't mean to do that, but there's a system, and the system demands that everything shoehorns into their particular model. And there is no model for this child, there's just love, care and attention in the most appropriate places, which is at home. And this young mother has given up her career to look after her son, who may have a shortened life. So that's where an advocacy would come in, it would take the pressure, the enormous stress of that young woman and mother, in terms of negotiating for her son in the system. And I think to have someone believe you is really, really important in a fragmented system. So an advocate is on your side and believes you are going through this stress and difficulty and is going to be relentlessly there at your side, and to us that is just an incredibly important I suppose signal from the state that this is broken, but we're here, there is something being put in place to support you and to recognise that. And the other thing that happens that you alluded to there is that diminishing of expectations, when you get so worn down by having to navigate things, then your expectations diminish and often we see with children and families just accepting then whatever is offered, and we see that with adults with intellectual disabilities, being put into a position where you have to accept a house 100 kilometres away, because that's the only thing that has been offered and you have been worn down by the fight. So again an advocate will relentlessly say that isn't right. They may not necessarily be able to fix all of it, but they will support a family to stay on that side and to see that this is a rights issue for your child. To finish, this young mother has moved from one part of County Galway to another part of County Galway because she couldn't negotiate nursing care at a special school but could get it in a school in Galway City. Now there is something wrong with the system, where one part of the county says you do need this service and the other part of the county won't provide the service. Go raibh maith agat.