Mr. Joe McGrath:

I am a committee member of the National Platform of Self Advocates. The platform is an organisation for people with intellectual disabilities run by people with intellectual disabilities. On behalf of the platform I have worked as a co-trainer with the centre for disability law and policy in Galway to teach staff in disability services about this law and what they need to do to get ready for it. I have been doing this for the past four years.

This law is very important for us but we have not been given enough information about it. Since the law was passed seven years ago, no one from Government has told us what we need to do to get ready for it. Now the Government is planning to make more changes to this law before it will be up and running. The Government published a document with these changes that is almost 200 pages long. The language used in it is very complicated so we do not know what these changes will mean for us. This is not good enough. Everyone has the right to know what the law means for his or her life. There should be an easy-to-read version of the law so that we can understand it for ourselves. Because there is no easy-to-read version, I worked with Professor Eilionóir Flynn in the university in Galway to figure out what these changes will mean for the platform and our members but there are still a lot of changes that are very technical and hard to understand.

Some of the changes the Government wants to make are good, such as changes to how complaints are handled, how expenses of people making decisions are paid and how a support person can be stopped by a judge if they are doing a bad job. I think the decision about whether a court case is heard in private or not should depend on what the person with a disability wants. It is good that the Irish Human Rights and Equality Commission, IHREC, wants to recognise its disability advisory committee in the law. However, I disagree with some of the changes the Government wants to make. I do not think people should be allowed to share information about a person with a disability without their consent unless a judge says it is okay.

Our privacy is very important to us.

People with intellectual disabilities should not be ruled out of being on a jury just because someone thinks they cannot understand what is happening in court. The National Disability Authority, NDA, does not need to be named in the law about the Irish Human Rights and Equality Commission, IHREC, monitoring the Government on disability rights. Other changes should be in this law that are not there right now. The law should make sure that people in charge, such as the Minister, the Decision Support Service and IHREC, talk directly to people with disabilities and the groups that represent them, such as the platform, to understand what we need to make the law work for us.

The Decision Support Service should write a new code of practice for people with disabilities to explain what the law means for us. It should also write one to explain the law to our families. Many of the changes the Government wants to make to the old law will make it harder for people with disabilities to stay in charge of their own lives and keep making decisions. I do not worry about people like me who can speak up and say what we want but I am worried about what might happen to people who are not able to talk for themselves.

The Government has had considerable time to come up with the changes it wanted to make to this law since it was first introduced seven years ago. However, in all that time, the Government has not talked directly to people with disabilities to find out what changes we want to see. In the platform, we want to make sure that any changes to this law make it easier for people to make decisions and get support if they want to, not harder. We want the Government, the Minister, the Department and the Decision Support Service to listen to and work with us. Nothing about us, without us.