Mr. Christy Lynch:

I will address the last point first. I could talk about it all day but the committee does not have all day. I managed the national project on moving on from congregated settings. I am the author of the report. I have a fair level of knowledge. It is clearly a burning issue for a number of Members of the House, not only those on the committee. If the committee wants me to come back at some point in that capacity, I would be happy to do that. I am now chairing the task force and I will come back to a comment that was made on it. If one takes personalised budgets as an example and goes looking at the data and the evidence, there are examples but we do not have what I would call a robust body of empirical data and evidence. We have lots of examples of successes and it is definitely something that should be and will be available to people. That is in contrast to the congregated settings report which contains four decades of data and evidence of different things people have tried. I am not giving my opinion here. The evidence is when it is done properly, the effect on quality of life of moving people into community-based services, in keeping with Article 19 of the Convention, is much better on every measure. The measure of success of our efforts to decongregate our institutions should not be how many people left and went through the gates; it should be the level of community connectedness of the individuals after they have moved into the community. We should ask what their quality of life is. We have to get it down to the impact on individuals. We have lots of success stories of people who have moved in recent years and who have transformed their lives because it was done well. My colleague alluded to one of them. Having been involved in it, people talk to me about examples where it has not been done well and families were not fully involved. If one reads the report, a lot of time and effort was taken to give guidance on how to do it well. I will leave it at that.

With regard to personalised budgets, there was a comment made to the effect that the HSE will never give up control. My response to that is this is not a HSE committee. It is not a HSE task force. There are, from memory, two people out of 50 involved. It is a commitment in the programme of this Government. We have been given a task, which we will deliver on. The Government will decide whether to implement the recommendations of the task force. The job of the HSE, the last time I checked, was to execute the policy Government signs off on. I have spoken directly to the Minister, Deputy Harris, and I have spoken a lot to the Minister of State, Deputy Finian McGrath, and I assure the committee that there is an absolute commitment on the part of both to get this done and to do it well. The one thing they keep stressing is that there should be more choice and more control for people with disabilities. We need to do that.

I agree with what has been said on the issue of carers. As we are a provider, my staff often ask who our primary customer is. Is it the adult with an intellectual disability? With the passing of the capacity legislation, it will become a bigger issue for providers. One of the issues is if mom - it is often mom, but it can be mom or dad - is sitting there saying "I do not want this to happen," but a 25 year old or 30 year old man or woman is saying "This is my life and I want you to support me to do this." We have those challenges today and they will be accentuated in many ways when the capacity legislation is commenced.

I will link the nursing home issue back to congregated settings. I am working from memory but I think we have a recommendation in the report, which was published in 2011, that the issue should be looked at. When I started doing the work, I met the Health Research Board, HRB, to look at where the congregated settings were and who was within scope. The project was to look at people with intellectual and physical disabilities. Of the 4,200 people, only about 300 had physical disabilities. When I looked at the list in the HRB, I was quite shocked because there were one or two people in nursing homes the length and breadth of the country who were young and had particular conditions. They were there because there was nowhere else and not because it is where they should be or what they needed. It is an indictment of all of us. It was 2008 when we started the work. Almost ten years later it is still an issue that needs to be addressed. It is one that has been around for an awful long time and something needs to be done about it. Perhaps it is something the committee could address.