Ms Fleachta Phelan:

It could be the adaptation of a car or a house. I do not know what level of detail is in the report on the specifics. Family Carers Ireland probably cited its own report earlier this morning. The Vincentian Minimum Essential Standard of Living Research Centre has estimated that somebody caring for somebody with a profound disability requires an additional €244 per week to have a minimum essential standard of living.

It is really important to mention inflation when talking about the cost of disability. You will hear references to a guide range of €8,700 to €12,300 but I have started adding consumer price inflation to that because the figures from Cost of Disability in Ireland are already significantly out of date. They are based on data from 2020, at the latest, and much of the data is actually from much earlier. We keep repeating a range that has been completely eroded in recent years. As Mr. Hannafin said, we are almost hitting €15,000 at this stage. There has been a significant cost because of inflation.

It is also important to remember that because the range is so significant, as comes up in the Indecon report, some of our members point to costs hitting €100,000 or more. This would be in the extreme case of somebody dealing with extreme and profound multiple sclerosis or cystic fibrosis, given the level of medical and other costs. It is really significant and not sufficiently factored into provision.

I have two other points, and I suspect Ms Porter will have some information on gross and net figures. The person-focused approach is really important. If we come back to the UNCRPD as our guiding light, we recall that one of the concerns about the reform proposal in the Green Paper was the lack of centring of the UNCRPD given that it is supposed to guide us. Article 27 refers to an adequate standard of living but later there is a reference to the “continuous improvement of living standards”. This is really important as well. It is not just about having an income above the poverty line but about having the opportunity, like everybody else in society, to have your living standards improve continuously. In recent years, we have seen the erosion of the real spending power of the basic social protection benefits. Those are my comments on the person-focused approach.

On appeals, year in and year out in my statement I focus on the 42.7% allowed, but there is also a level of deciding officer changes, so it almost hits 60%. The pattern has been the same for decades. It is alarming to hear of Mr. Hannafin’s experience of something so basic requiring so many appeals. As he said, many people would be put off appealing. There are probably people whose applications are declined and who are not appealing because they do not have the supports and the system is so complex. We really need to address that also.