Kathleen Funchion urges wider parent consultation on disability services

I just want to make one or two brief points myself there are more observations really I suppose at this stage than questions I mean we've had this our third meeting in relation to this topic and everybody that has come to the meetings is obviously you know very passionate about the issue and particularly I think the meeting I'm not sure if you had the opportunity to see it but where we had parents reps and we had some organisations advocacy groups and stuff in like it was really powerful what they what people were saying and I would imagine and I actually know that we all as elected representatives get contacted regularly by parents really really who would they're absolutely trying to do their best by their children and they really really want to get these services and so obviously it's fallen down somewhere along the way and I do appreciate the fact that you've said that you accept the Ombudsman report and very much want to work with it but I suppose I think one of the key things going forward and I know you made reference to there are some levels of consultation or people with lived experience experience but I think that needs to be broadened out I think there needs to be wider consultation with people themselves and then maybe parents you know and it might differ from CHO to CHO but I think that that is one of the key ways of actually getting something correct and getting something right is speaking to people who've used the service because it can be very overwhelming you know you're given maybe a lot of documentation I can't even imagine what it must be like at the moment in relation to COVID but I think we can't fool ourselves and we can't fool ourselves and say that COVID is the issue because it isn't there was issues in relation to resources and funding and staffing and that's something that we have no difficulty raising as a committee and in terms of trying to advocate for additional resources but we do need to know that from the HSE's point of view that all of that is being used adequately and there is you know good consultation with people and with parents and will say it varies from region to region. In some areas it is excellent, in other areas not so much. We need to look at the areas where it is working and try and replicate that and try and replicate that best practice. I would hope that we could see maybe better and wider consultation processes. I do not mean sort of once off. If there was representative bodies set up where people can have a meeting once a month and say this is working, this is not working. You are not going to ever be able to beat that type of knowledge. I would hope that you will take that on board or maybe you have some points to say on it now. We do want to have regular engagement with yourselves. It is difficult at the moment in terms of we are limited to the two hours and it feels like you are being bombarded with questions, but that is obviously just down to our own time constraints in relation to COVID. We would welcome those regular reports and regular documentation because then we can try and see where it is falling down and give credit in the areas where it is working and then see how we can replicate that because we cannot allow this situation to keep continuing. It really is failing our children and it is not acceptable really in 2021 that we still have children falling through the cracks like this. So I would just appreciate the ongoing engagement, those reports. We definitely would welcome those on a regular basis and then if there is stuff that you can say maybe in relation to widening and broadening out feedback and consultation for parents. I would mean genuine situations where people's views are actually being taken on board. Some of the knowledge people have, if they have a number of children in different services, you are not going to be able to beat that knowledge and I think that you should welcome that maybe rather than see it as a negative thing. Thanks very much. If you want to come in on any of those points or any concluding remarks you want to make as well now at this stage. Thank you. Just to welcome your remarks, I thought you did an excellent job at just summing up the kind of key concerns and we absolutely will provide whatever assistance and support by way of reports and participation to this really important committee absolutely without question. A couple of things I think is important for me to reflect by way maybe closing on a couple of important items. One relates to the involvement of parents and people with lived experience, people with disabilities in other words, to have a central involvement in how we deliver better support that actually meets people's real living situations on a day-to-day basis. I mentioned before through Professor McLaughlin and his work we are already doing that. I mentioned some examples before, we mentioned in honour for the autistic community and the improvement programme being developed there. On the clinical design programme we have parents and we would also have people with lived experience as well. We are very committed to, on a regional basis, because we need to have not just top-down approaches, we need bottom-up approaches, so each of the CHOs have to establish and are committed to establishing forums which allows for participation and making sure that the parent's voice is heard. It is important to get across the point that for quite some time actually at this stage the progressive disability services forums actually do include parental reps as well. We want to make sure that it is happening equally and comprehensively in each of the nine regions, so we are committed to doing that and making sure that it happens and that it actually genuinely allows for parents to have a real role in relation to how we develop services and to be critical friends as well. I think the point around parents, not just in Covid times but pre-Covid times, under tremendous strain which is why we are committed to not just reform for reform's sake but actually putting real investment. I should make the point again that Mr Rabbit has made huge strides in relation to additional investment. I mean a loan in this year's budget which will be £2.2 billion, £100 million additional in our base budget and an additional £28 million once-off monies not just to do with the assessment of need backlog but also under the Minister's transforming live scheme as well which is about helping services change how they do their business, give additional resources in relation to important things like access to equipment, access to intervention programmes as well, so that is making a real difference. I mentioned as well the programme for government which commits working towards implementing the capacity report. That is a critical one for us from the point of view of looking at a longer term approach in relation to investment in disability services in so far as we make sure we do the necessary reforms to meet the conditions of the UN Convention. I cannot emphasise that enough as well. Just to conclude by saying that we really do welcome today and we have been looking forward to it and we are absolutely committed to making sure that you get all the information that you need as the Legislature in relation to not just policy but what we would refer to in my opening statement around absolutely welcoming the Ombudsman's report and the HSE will absolutely play its part in relation to implementing the recommendations that are in the context of the policy that we are already and have been implementing as well. Thank you, Gerlach and Members. Gerlach Thanks very much. I also want to thank your colleagues, Ms Angela O'Neill, Ms Breida Crane-Roach, Professor Malcolm McLachlan as well as yourself Dr Morgan for being with us today and just thanks to the Members as well. It is always more difficult chairing these meetings in COVID so I always welcome people's cooperation. Thanks to you, Dave Press. Thanks a lot. You need to learn more about your plans. I always say, you're watching this. You need to get started in the notes. I always ask everybody to talk to you about the metrics you saw and there is going to be something that you may often smartphone smartphone that hasットric bahs. For my mind you may even pay for yourself but you can only watch my videos and even see how muchaker. So you are learning toki Gimba PKI. And some people are learning itself in thequote market.