Martin Daly: Personal Assistance Over Reinstating Institutions

Thank you very much. I just want to apologise to the witnesses, I'm on the Health Committee as well and trying to share both committees sometimes is difficult. Thank you for coming here today. Just following on your comments really around the personal assistant role that would enable people living with disability to live full lives and also within their communities, I think you've reflected that in your comments around, on one hand we've de-institutionalised but sometimes what has come after that isn't desirable. I think for example, I've already identified where de-institutionalisation can go wrong, but where it could be going right is if the focus did shift to that support for individuals making choices themselves and in particular with regard to the choice and quality of housing options that are available for people with disability. Many people with disabilities would be able to live in their own homes or perhaps sharing homes with other people that they choose to share with themselves, rather than being compelled into inappropriate sharing with inappropriate combinations of people. And it does, I think, require a culture change and a mindset change, but it certainly is possible. I think one of the difficulties we're seeing with regard to personal assistance at the moment, and I suspect deputies and senators are engaging this with constituents and members of the public on a regular basis because we hear it quite a bit, is that personal assistance support, when it is provided, it's not reflective of the person's needs in terms of supporting them to access education or supporting them to get ready to go to work or supporting them to live independently or around times that are outside of office hours. So I think that the government commitment for more investment is welcome, but it's also about quality and structure as well as quantity. And I suppose it's important to distinguish between personal assistance and care. They're two different roles and I think we had witnesses here last week who very clearly distinguished the difference that personal assistance was about enabling the person living with disability to live a full life in every aspect and at their desire, rather than something that was imposed, a structure that was imposed upon them. I don't think we have a global national picture of the scale, but I think everybody that we engage with in this would be firmly of the view that there is a significant proportion of people that are in institutional settings, people with disability in institutional settings, that could be living in the community if they were properly supported. And I think that is the real challenge that we need to address here. It's those that are unnecessarily institutionalised and there is a huge potential for making progress on that. I take your comments on that and I brought a case to the floor of the Dáil recently and I'm hoping it will be resolved where someone who is inappropriately a young person in their teens in a care setting, again you quite clearly sort of outlined what can happen. They were inappropriately in with someone who triggered them and caused them to cause themselves severe self-injury on repeated occasions and parents who were willing to provide that care and get that care in the community, and this often comes back to finances, but they were prepared to do that and outlined a plan that would cost the HSE exactly half of what they were paying this private provider to provide, €750,000 down to €350,000. And yet they were not prepared. There was cultural resistance within the HSE to engage with those parents. Thankfully that's moving forward now. So I take your comments, I think they're real comments and they reflect reality. And I think there are examples in other jurisdictions where personal budgets, which goes in tandem with personal assistance as well, because that's what it comes back to. And it doesn't have to be any more expensive. It can, but it does require a change in mindset and it requires flexibility. And also to put the person living with the disability at the centre of the picture. Thank you. DR FLYNN Doctor Michael, did you want to come in briefly? DR KAYESS If I may very briefly, just on the impact of deinstitutionalisation, in the move from larger settings to smaller settings we saw a number of costs emerge for disabled people. One was the sheer number of people, I know you heard it from witnesses in the last meeting that you held, of how many young people under 65 who were disabled ended up in nursing homes. We heard in particular of an example of somebody who had been moved out of somewhere where their sign language was the normal language and was entirely isolated where no staff or fellow residents had sign language and was really isolated. We have also seen the impact of the continued distancing of people from their homes and families by the allocation policy and process which continues. And the other thing which we heard from a resident of one of the smaller congregated settings was the lack of development for disabled people, the way in which they were still moved from pillar to post, so when the provider was in a holiday period, people were moved out of their own rooms into other spaces, so the dignity of having one's own room was completely undermined by the practice. But also that person was on their third iteration of an independent living course, because it was the only educational opportunity available to them in practice to get out of that setting and to engage with other people, and just entirely pointless in terms of the learning process, but really crucial psychologically, they said, to keep mind and body together while in that setting. So I think that's what we say when we see the dynamics and the culture don't necessarily change when the size does. Thank you. Thank you, Doctor.