Pauline Tully (Cavan-Monaghan, Sinn Fein) | Oireachtas source

I welcome the witnesses and thank them for their presentation. I commend the work they do. It is very impressive that it is the first study in Europe and the only one in the world that compares ageing between people in the intellectual disability community and others.

As others have said, data is important, and there is an absence of data among issues relating to disability. Without proper data, one cannot plan. That is where we need to be looking at, planning for going ahead. Sometimes we hear, as soon as a child is born in other countries and it is recognised the child has a disability, that every stage of the child's life is planned for, such as the child's school place, home and so on. We need to get to that stage because the HSE in particular seems to operate continually in crisis mode, where everything is reacting to something and no plan is put in place.

Somebody mentioned people with disabilities living with aged parents and there is no plan for those people if the parents pass away, which is something that worries the parents constantly. Next thing, the person with a disability is put into a residential setting, which may be miles from his or her home and away from everybody he or she knows. It is really hard. Some of the findings the witnesses have for health outcomes for people in congregated settings make me shudder because I am thinking what kind of life people have had in these settings for years on end, where they were locked away and basically forgotten about. It is awful.

I submitted a parliamentary question not that long ago on numbers of people in congregated settings, expecting that the numbers would be going down and that people were being moved out into the community. It has been a number of years since we have moved on from congregated settings and we have had time to move on from that and from a situation where people, unfortunately, would have passed away before that happened. People are still being put in congregated settings, however, and that is really worrying. We also have a large proportion of people under the age of 65 being placed in nursing homes, not by choice but because there is nowhere else for them to go. Again, that is down to a lack of planning, both in housing and in the supports needed to allow people to live independent lives in their own communities. The work TILDA is doing and the studies it has done are really important. Lots of other good work is being carried out by different organisations and there are lots of reports, but they are sitting on shelves gathering dust and they are not being used to plan for the future, which is what is needed.

The issue regarding the overuse of medication has been raised with me by a number of parents of young autistic adults. They are living in places that are not called congregated settings but group homes. There might be three, four or five people living in the home. I am very concerned about it because I have heard it from a number of people where the young people are being prescribed medication and nobody seems to be looking at what medication they are already on, how those medications all interact with each other and the danger that is causing to their physical health. I am not saying all of the homes are like this, but some of them seem to use medication to have an easy life for the staff. As I said, I do not want to cast that aspersion on all group homes, but some people are also being put into these homes without choice. We have the Assisted Decision-Making (Capacity) Act and other Acts. We are supposed to be moving away from wardship of court, and it seems to be taking too long to happen. I am concerned. This relates to some of the things Professor McCarron has said. The work TILDA is doing is fantastic. Many of the questions I was going to ask have been asked, but what TILDA is doing is wonderful, and we need to use it to plan for our citizens and ensure we have inclusive communities where everybody is equal, catered for and valued.

Awareness training was mentioned. That goes across the board as well. Our whole society needs to change about how we view people with any sort of disability, intellectual or physical, because there are still very old-fashioned notions out there.