Dr. Eamonn Carroll:

I will follow on from what Mr. Kenny was saying about the current role of goodwill and ingenuity. There are many informal fixes in the system at the moment. When we surveyed the HSE disability managers, they were pulling all sorts of strings and contorting themselves in all sorts of different ways to get people as many hours as they could. That feeds into the CHO variation, in that what people get is not a function of them as individuals or their specific needs, but is rather a function of what can be assembled for them. It is unacceptable in a modern social democracy to have that level of variation.

A lot comes back to the individual. We interviewed disabled people who were accessing PA supports and many of them were able to supplement their initial package of hours through either following it up with the HSE, and doing so repeatedly and keeping pressure on until they got the hours they needed, or through finding other ways of accessing support. That often led to them getting the total number of hours that they needed. It tended to be those who had more resources to advocate for themselves who were able to access those supports. They were the people who had a high level of education or of personal resilience and charisma to keep fighting that fight.

We spoke to other people, maybe with an equal level of need but who did not have quite that level of sheer fight in them, who were accessing much less support. That is unacceptable.

In terms of the database, we initially set out to do in this project with the National Disability Authority, NDA, to map unmet need in Ireland. We were hoping to map both unmet need in the sense of people who were receiving a certain number of hours but needed more hours and also people who were not receiving any hours, yet the lack of that database and the lack of sufficient administrative records meant that we could not do that. It was not recorded anywhere. There was no way of accessing this data. It was all informally held within the HSE local areas but it was not put down anywhere, and there was no real way of figuring out what the unmet need was. We were able to get a sense of it from talking to the HSE and to service providers and then a sense of that first type of unmet need in people who are getting some hours but not enough, but we were not able to tap into that second type of unmet need of those who were not getting any, which is a shame because it would be great to have been able to record that, to quantify it and to give a sense of what it meant for people as well.

In terms of employment hours, we also saw the informal fix and the fudge. I will not go into the exact strategies the people were using for fear of identifying them. People were being very resourceful and ingenious in finding ways to access that support and employment when it was not necessarily available for them. What it meant was that they were able to access full or part-time employment. You could see the impact it had on their lives was massive economically, socially and personally. Moving that away from this informal ad hocpulling together and towards something that is more outlined in policy would be very valuable.

In terms of the 65 year cut-off, there were also informal fixes. The HSE mentioned there the system could sometimes be onerous. Even in that case of transitioning and continuing with PA support after 65, in some community healthcare organisation, CHO, areas it seemed to be quite straightforward but there was one interviewee we spoke to who had had to fight and fight to keep them. From speaking to this person, who was over 65 but certainly in full possession of their mental faculties, they were well able to direct their own PA support. This person was just having to continually fight to do so.

Finally, it is worth noting, on the role of the personal assistance and the assistant or support versus care role, we see a lot of people who want only support who are accessing it as a support as leaders in full charge of their hours, often fully registered as employers, and taking care of their own tax and legal obligations and everything like that. That model works for a lot of people, and especially for people in receipt of large packages of hours, but that also places a lot of responsibility on people and it is a big burden on them to manage that. From speaking to service users and from our survey, maybe it is not suitable for everyone and there are some PA service users who prefer more of a care orientation and value a more caring relationship with their personal assistant. It was important that the personal assistants were supporting them in doing the things that they wanted to do but also there was a caring element to the relationship that they valued as well. That comes back to the evaluation of need and being universalist - that everyone is getting the same evaluation but that it is individualised enough to recognise what people want and, importantly, involves the personal assistance service users in the selection of their personal assistants so that they can see whether there is a fit there in terms of the type of relationship and rapport they want to have.