Mr. Christy Lynch:

I will take some of Senator Dolan's questions and then respond to the Chair's questions. The Senator asked whether we have relied too much on health. We absolutely have, without question. We understand the reason for that, because if we look back at the history of disability it comes out of the medical model. While those of us in the sector would like to think that we are out of the medical model we absolutely are not. It is still alive and well in the country and plays out in all kinds of ways in the lives of people with disabilities.

To give an example, without naming names, I stood not far from this room and spoke to a Government Minister a while ago about the area that that Minister has absolute responsibility for and he said that I should speak to the Minister for Health. I did not have to talk to the Minister for Health. I went to a meeting with the Department of Social Protection with the Irish Association of Supported Employment, which is the only national body dedicated to the employment of people with disabilities. I was the founder so I am biased, but employment has been mentioned by everybody. It was seeking funding for a core grant to keep their core staff in place. It did not get it and so it had to let its core staff go. It was told to go and talk to the HSE. I said that I deal with the HSE every day in my job as a service provider and asked why I would ask the health service to fund the employment of people with disabilities. It makes absolutely no sense. The medical model is alive and well, and to answer Senator Dolan's question, yes, we have relied too heavily on health.

The Senator also asked if it might make a difference if the two things came together. I ran the national project on congregated settings and therefore wrote the report. The Department that I met most regularly while we were doing that was the Department of the Environment, Community and Local Government. I remember going into a room and saying that we should add 4,200 people to the housing waiting list because that is how many are living in institutional settings who need to move out. We are way behind on the implementation of that report. The debate at the time was whether we recommend a five-year implementation or a ten-year implementation. In good Irish fashion we went for a seven-year implementation. That would mean that next year it would be completed. It is far from being completed, and as a colleague has said, a target - which is a very, very low target in terms of this programme for Government - will be reached not because we have done a great job but because people pass away. It is a bad indictment on all of us if that is our commitment to this issue.

Why, when we have the largest social housing budget in the history of the State, is the health service putting €20 million per year into providing housing to move people out of congregated settings? We badly need that funding in other areas. There has been no capital funding for New Directions, which is the day service policy, for many years, and for all kinds of things that the health service is responsible for. The answer is because of the lack of commitment in one Department which is responsible for housing to dedicate the required amount of money. They have dedicated some money and it has improved a little, but I do not understand why health is funding housing. It is not the responsibility of the Department of Health. The money is badly needed within the health budget. Please do not take from that that I am suggesting that the budget be removed. I am answering Senator Dolan's question about what could help. There is no point in providing the housing if the support and staffing for people to live in the housing, the supports they need to live their lives, are not also provided. That is one example, and there are many others, that will come together.

On the question of personalised budgets I am actually chairing the task force established by Government on that issue. It is great that there is a commitment in the programme to getting this done. When the Minister asked me to do it I said that the issue had been talked to death. We had been talking about individualised and personalised budgets for 20 years. The task force is working very hard and there are many people involved. We have every intention of meeting the deadline, which is to bring recommendations back to the Minister by the end of this year, and our work plan is on the Department's website for anyone who wants to see it. One of the challenges here is the level of expectation. There are people who think that it is as simple as getting the money and providing better value, and other people who think it is too complicated. It is taxpayers' money. We are trying to find a middle ground which gives people much more choice and much more control, but also to balance the governance requirement.

We all know that governance is a big issue, and rightly so, but it has to be proportionate. If I get a personalised budget of €10,000 or €15,000 versus one of €250,000, then the governance of that should be proportionate.

The other question is adequacy. We are looking and have looked all over the world. I am not sure that giving me a personalised budget to live my life, instead of giving it to a service provider, when it is not enough money for either, goes very far. Speaking personally, I have told the group that if, ultimately, we come up with a system of personalised budgets that forces individuals back into what might be described as traditional services, we will have done a very poor job. Hopefully, that will not be the case.

The final question, which is very important, relates to respite services. I encourage the committee to look back at whatever small allocations have been made to disabilities over those years. They will find that almost all of it went to progressing children's services, for therapy - and we need more of that - and the other area which was focused on was school leavers - again, we have to provide for young people coming out of school into adult services - but nothing else. We have repeated the mistakes we made in the 1980s. I understand the situation that the country was in but there was no investment in respite care and we have allowed the waiting list for residential care for people with disabilities to grow and grow. A father contacted me yesterday. He was at his wits' end after spending two years going round the houses to Deputies and all kinds of people. He is a lone parent and has a profoundly handicapped son and is at the end of his tether. I had to tell him that unless he was in an absolute emergency, he did not have a hope because there is no budget, not even for emergencies, but emergencies have to be dealt with. The knock-on effect of that, to answer the question, is there have been no new respite services. It is common sense. More children are being born every year, they are coming into the system, adults are living longer - thankfully - partly due to better provision and health care and so on, and with no expansion of the respite services, the numbers are continually growing, and whatever the number of places, the numbers trying to use them are growing all the time.

As providers, we all see families in crisis who are not getting anything like the level of respite they need. We know they will become the emergencies. A vicious circle operates here because there is no planning for emergencies, which brings me back to the need for multi-annual investment programmes in order that we can plan. Because there is no planning for residential services, emergencies happen. I am chairing a respite review committee at the moment in CHO 7. One provider has five respite beds blocked. The reason is because people came into respite, they cannot go home and there is nothing else. The lack of planning in residential services has a direct bearing on respite. The reason the federation is calling for a multi-annual investment programme is that there is no point in only dealing with school leavers. It is going back to the convention, it is talking about all aspects of people's lives. We have got to put up the money to take this seriously and correct the wrongs of the past and put right the fact that people with disabilities have paid too high a price through the austerity years. This is well documented. I have heard Senator John Dolan speak about it on many occasions. It is a fact; it is not someone's opinion. There is an onus on us to address the needs of some of the most vulnerable people in our society and so many parents, and not all of them are older parents. The parent I was talking to would not fall into the older category but he struggles every day and is being pushed from pillar to post. This has to stop and the only way that will stop is if we plan properly and invest properly.