Paul Murphy (Dublin South West, RISE) | Oireachtas source

The central point Deputy Gino Kenny made is an important one, namely, that the undervalued and effectively unpaid work of carers saves the State billions of euro. Their work deserves to be recognised and they deserve to be treated properly as workers, part of which involves having the equivalent of annual leave in the form of a guaranteed and legislated-for ability to access respite care.

This is obviously linked to the general poor treatment of people with disabilities by the State. The Government signed up to the UNCRPD but then did not sign up to the optional protocol in order that people can actually take action to vindicate their rights.

I want to speak about the particular case of a woman I will not name to whom I spoke last week, which really illustrates the struggles that so many people are going through in this country. She has a son with complex physical and mental needs. Originally, it was agreed that she would get four hours of home care per week. That was increased to 12 hours of home care per week on the basis of their needs. Because the whole thing is outsourced, the companies involved said they would need two workers to do this because the needs are so complex etc. and they could not possibly provide it. Then, for a long time, no company was able to provide it. Incredibly, because the hours were not being used and because the needs are so complex and so on, those hours have been taken off her. In the midst of all that, she went to LauraLynn children's hospice in terms of respite. LauraLynn agreed to accept her son for respite care and then got back to her and said it could not take him because he was mobile and, therefore, did not fit the categories. It said this was not coming from LauraLynn; this was HSE advice. This woman told me her son is mobile in the sense that he can crawl. He is not able to walk but according to LauraLynn, he is sufficiently mobile in terms of the HSE rules and, therefore, she does not qualify for respite care.

This woman and thousands of people like her are at their absolutes wits' end. They do everything possible to struggle to take care of their loved ones and then the State does not back them up. The State does not provide the resources to actually facilitate them in terms of the vital role they play and vital work they do. I would like the Minister of State to comment on that if possible. It does not make any sense whatsoever to me.

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