Ms Mary Farrell:

Senator Seery Kearney referred to the decision support service, DSS. We are talking about part 6 of the UN convention, the changes and the Assisted Decision-Making (Capacity) Act. All of that is under review. The amendments to the legislation have not been completed yet. There are a lot of concerns, and different groups and different categories of people will have different issues. We hope this is good news for everybody going forward from June. The commencement of the DSS will be in June of next year. That is good news for the people coming in, as they will no longer have to go through the Office of Wards of Court system.

Those who are currently in the system will transfer or discharge, and they will have to go through a court hearing in which they will be discharged into the new system. It is not clear yet how many might eventually go through. Some might be discharged. There are different levels of support, so it will depend on what category of support they go into. That will have to be decided in individual cases.

There is a huge focus now on the DSS when we raise any issues as wards of court. We are in the wardship system. Anyone who saw the "RTE Investigates" programme knows what I am talking about. I hope anyone who has not seen it will get the opportunity to look at it. It clearly shows many of the difficulties, which are only a sample or fraction of difficulties that exist in the wardship system.

We have been at this for more than 30 years, so you can imagine I have gone many a round with many people. Faces change, but the problems remain the same. We have gone a different route than many people. For those who do not know, there are many restrictions on wards of court. They cannot leave the country without permission so they cannot go on holidays abroad without permission. They cannot make financial decisions, decisions about medical procedures, decisions about healthcare and decisions about all sorts of other issues.

Financial decisions is one part of it. A person may be made a ward of court, often as a result of an acquired a brain injury in an accident. The person is awarded compensation but that award will not be paid out until he or she is made a ward of court because that is part of it. Senator Seery Kearney will understand that because of her background. This is the process and even if you object to it, eventually the time will come when that is what will happen.

We know of a couple of cases where people objected and were in the courts for a couple years. They were deprived of the funding they needed to help the disabled person. At the same time, they were trying to get out of the system and get the funding set up differently, such as a trust fund or something like that. However, that is not possible.

Many people who are in wardship do not really meet the criteria for wardship. One man on the "RTE Investigates" programme stated clearly that he had a brain injury but that it did not mean he was incapable of making decisions. Many people like our son, that man and others in wardship would not meet the criteria for wardship if it was a test. I have not tested it because the bottom line is that someone like our son needs protection and he needs his funds protected. He needs a system there to support and protect him. I cannot say that the wards of court system has supported or protected our son. Members heard me discuss going to the UK for rehabilitation. They would not believe the difficulties and the obstacles put in front of us in allowing us to do that. From that day forward, we decided that this was not something we were going to let rule our lives. We were going to fight it, when necessary to do something, but just jog along and do our own thing. That is why our son lives in his own home and not with us. We live quite nearby and we are able to support him. Yet at the same time, he has that level of independence. His dependence has grown with his disabilities, and that is partly due to the fact the services have not been. You need maintenance for someone with an acquired brain injury. People will say he has had rehabilitation but they do not understand that this is a lifetime effort. You have to have maintenance, you have got to do physiotherapy and your exercises, you have to have your splinting and you have to have all the other additional services that go with that.

I refer back to the DSS because of the difficulties we have now. When we have a parliamentary question asked, it is directed to the DSS. We are told this is the solution and not to bother it because that is old hat. This is the message we are getting, that is, that this is all old hat. The DSS tells us this is the panacea and this is the solution to our problems and that it does not know what more we want.

There are many problems in wardship, and some of them will be addressed on leaving the wardship system. There are outstanding issues that will have to be addressed, perhaps at a forum. We have already discovered through various Oireachtas committees, reports and a Dáil debate, that the Comptroller and Auditor General does not have authority to oversee these funds. There is no oversight of this. Despite these people being under the protection of the State, there is no oversight. The State has no oversight. We are told that this is a matter for the courts and that it is obliging us by giving us information but it has nothing to do with it. The committees and everybody else have said it has nothing to do with them and to move on.

There are people who are financially compromised. Elderly people, like ourselves, are providing the backup to allow these wards to continue living in their own homes and their properties. What will happen when we are no longer able to do that? These funds are missing, although "missing" is not the correct word. Wards can no longer enjoy the funds that they should have. This has to be addressed and the Oireachtas will have to find a method, a mechanism, a forum or a way of doing this. We are adamant about this. It is not going away.

Both Ministers said that this going to be fine and wonderful. It will be wonderful in many cases and it will help enormously. A three-year period is provided for in the legislation for the transition of wards from the wards of court system to the DSS. During that time, many people are going to be in wardship. DSS will commence in June of next year, and then there will be an additional three years. Some people could be in wardship for two to three years. As Ms Sarah Lennon from Sage Advocacy said, many people will die before they ever get out of the system. There is a lot here but we will not cover it here. It needs a separate forum for debate. People's voices need to be heard on this. That is all I can say about it. It is severely impacting on a personal level.