Mr. Bernard O'Regan:

I thank the Senator. I will try to deal with these questions as best I can. Sustainability for families is a real concern. In other situations I have used the word "crisis". I have tried to be careful in the use of that word because it can be overused, but I would not underestimate the stress and demands on families and on their family member with a disability in light of inadequate services.

In some way that links to the question about the future regarding children and keeping people out of those service models we are trying, in some respects, to move beyond. Where families are in crisis and where we are not meeting their needs at the point where the need first emerges, that level of need escalates. When it escalates, we then tend to provide the solutions that we know. The better thing to do would be to try to engage with families at an earlier stage and try to figure out solutions that are innovative and responsive to their needs, but which are not necessarily the conventional answer or the conventional model of service. The more we can get back to that grounding, the more we can keep a focus on young people as children and as teenagers who want to be part of their community with supports. We can focus on engaging and connecting them to their communities and helping them to develop relationships and supports within their communities, so that a reliance on services is diminished. We can focus on reducing reliance on the conventional model, where when one needs a place to live, one goes to a group home. Instead one should be supported to find a home that is designed around one's needs and preferences and which is shared with the people with which one wants to share it. Where people need support, those supports should be organised in a way that makes sense for them. The regulatory framework should be designed in such a way that it can assure the public and the State about the quality of those supports and not just about the brick walls within which people live.

The comment on whether we are service providers or of service is critical. It goes to the nature of what the future will be. It has to be part of our ongoing dialogue. Traditionally, services and service providers have found themselves almost trying to be all things to all people. I do not think anybody or any organisation can do that. We must ensure that the person who is being supported is the reason we all exist as service providers in the first instance, and that in carrying out and providing those services we are there in service to the person who needs some support. In that sense, there is a shift in power from service provider to the person supported. As people increasingly govern their own arrangements and are supported to do that, many things will be shifted.

As people are more in control of their own services and are directing them - and are being supported by their families and friends in doing so because some people will need significant levels of support to do that - the work of the regulator will also be impacted because there will be a wider range of models. It will not just be a conventional organisational hierarchy with a board and a management structure. Increasingly we will see new models or governance and oversight of support arrangements come into play and they will have to be part of a new framework.

For my own part, and Mr. O'Donnell might have a different view, I think the direction that HIQA is talking about in terms of a different regulatory framework is very welcome. Certainly, for my own part, I think it has taken a lot of cognisance of the experience over the past number of years.

Some of the struggle, to which Mr. Colfer referred, concerns providers either being hesitant about what can be done within the current framework or providing different models of service but with great uncertainty about being in breach of some regulation. Therefore, moving to a different framework would be welcome.