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

I cannot disagree with anything that has been said. We have heard many of these issues in the committee before, but the more we hear and discuss them and tease them out, the better, to continually raise them and raise awareness.

They do not get the proper recognition or pay and conditions, and that has to change. There is a major shortage of home care workers and assistants. Until the Government alters the procedures relating to how they are paid, how they work, their career progression and so on, that will not change.

Ms Cox mentioned that the income for a family carer is less than €20,000 per year. Is she including the cost of disability when she talks about that figure? The Cost of Disability in Ireland report by Indecon recognised that the average cost for a family with a disabled member is anything from €8,000 to €12,000 per year. I was contacted by a man the other day who said it was €20,000 for his family per year to cater for and look after for their adult daughter because she has complex intellectual disabilities. Another study that was done and presented at the Joint Committee on Autism stated that it costs €28,000 per year when everything is taken into account. That might be because you cannot work outside the home and because the carer's allowance, if you even qualify, is so low. Then one has to pay for services so taking everything into account it came to €28,000 per autistic child. I ask Ms Cox to comment on that.

The Assisted Decision-Making (Capacity) Act 2015 is welcome. We have been waiting since 2015 for the full commencement of that, which seems to be imminent. It is good to recognise that everybody has capacity until it seems to be otherwise. Somebody who presented at the Joint Committee on Autism said that often when a person is non-verbal, perhaps autistic, it is assumed that they have no intelligence, which is just dreadful. Nothing could be further from the truth. Have enough supports been given to family carers to become the decision support person if the person lacks the capacity? That includes financial support and other support.