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

I wish a good morning to all our guests and thank them for coming here.

I commend the work Inclusion Ireland does on inclusion and on advocating for people with intellectual disabilities.

Ms McDonagh concentrated a lot on education. It is so important because if a child has a proper, appropriate and inclusive education, it will mean so much to him or her as he or she progresses through life. That is not happening because we still hear of children, as she said, travelling long distances to get an appropriate school placement, but also of the short school days. Expulsions are still happening. It is an absolute disgrace. I have come across children being expelled from a special school setting. If that setting cannot accommodate their needs, where are they supposed to go? The resources need to be put into our schools to ensure they are inclusive and they are meeting the needs of all our children, especially autistic children.

Ms McDonagh commented that there is often an assumption that somebody who is non-verbal lacks intelligence. We have heard that before at this committee. That is so untrue and so outrageous because autistic people are known to be so intelligent and to have so much to offer. There is this difficulty. Is it a lack of awareness or a lack of acceptance? As Ms McDonagh said, that is important and one could talk about all of the rights. We have to start with education and our young children.

Given that CDNTs are not properly resourced and children are missing out on so much, I am concerned for the cohort of children that needs those services now. The workforce planning required to put in place a properly-resourced CDNT will take a number of years. However, that has to be done. Has Ms McDonagh any suggestions for what could be done to accommodate the children who need the services now because we hear from parents that they are regressing in some cases because they are not getting the necessary speech and language therapy, occupational therapy or whatever?

The witnesses also mentioned the many people who are living with aged parents or aged carers. I talk to parents all the time and they worry constantly about what will happen to their son or daughter when they die. The HSE will put them in emergency accommodation. Sometimes they are 40, 50 or 60 years of age and have been living at home with parents and now they are trying to deal with the grief of a death of a parent and primary carer and having to get used to new accommodation, which, again, is seriously lacking. We need accessible housing, we need supported housing for those who need extra support but we also need to many other resources, including accessible transport, access to education and access to employment to make that independent and properly work for people.

Dr. Roddy has done research. We are seriously lacking in proper data on autism and disability in general. I, therefore, welcome the research she has done. I will ask her about one figure there. She says it costs approximately €28,000 per family. The Indecon cost-of-disability report produced more than a year ago indicates that a family with a disabled member usually has an additional cost to the family of anything from €8,000 to €12,000. That is the average and it is more for some. I am concerned about that figure. It is extremely high. I wonder if Dr. Roddy is saying that is the annual cost. Perhaps she could elaborate on that cost and where that sits with the figure that came out of the Indecon report, which, again, is a lot of extra cost on a family with a disabled member.

Were any of the witnesses involved in the work on the national autism innovation strategy? Have they been asked to be involved or are they involved, and how that is progressing?

Sometimes the case has been made to look to other countries to see what is best practice, but are we a country that could aspire to best practice? What would it take to do that? Why should we have to be a follower? Could we be a leader if the proper resources were put into the supports that are needed? I thank our guests.