Ms Shelly Gaynor:

I have been a PA user for nearly 26 years. We have heard a lot today about care. As someone who uses a PA, I do not seeing myself as being in care. I need assistance. The problem with the PA service as we know it now, 30 years after Mr. Martin Naughton and others founded the whole concept of independent living, is that it is too medical. Everyone needs to get up in the morning. Everyone should be able to have a shower.

I class myself as a leader. I know that within the report, it stated "PA users". Thirty years ago, where you used the PA service and you were disabled, you were called a "leader". Some people do not like that term, and that is their choice. I like the term "leader" because it enables me to feel I am in control of my own life. When I am supporting other disabled people within my job, I find it difficult. I have availed of the service for years. I am now getting calls from people saying the HSE is prioritising me getting up, going to bed and having a shower. Every person, whether disabled or not, should have the choice, control and freedom to do what they want. That is one of the main difficulties that we have, and that I have, as a peer mentor. I have over 100 hundred hours a week. That sounds like a lot of hours, and it is, but I know there are loads of people behind me who do not have anything near that. It makes my job very difficult to try to support them to do what they want to do if they only have ten hours a week. Disabled people have the same aims and desires as anybody else. It is difficult if someone only has ten hours a week of support or assistance, not care. There is a difference between the PA service, a legitimate, genuine and pure PA service, and care. If you are only on ten hours assistance a week and it takes you an hour to get up every day, including a shower and whatever else you need to do to get ready for the day, only three hours per week are left for everyday life. It only leaves three hours to lead a life. That is not adequate. It is disappointing and hard to deal with.

There are people I work with and support who are very well educated and have degrees galore but who cannot access employment because they are afraid they will lose their day service. That has happened and it is difficult. We definitely need a definition of "PA". I and the many people who use the PA service, and who class themselves as leaders or PA users, are not looking for care, as we said in our opening statement. We really believe that. I certainly do. PAs are an extension of arms and legs. They do things solely under my direction. I am a grown adult. I know what needs to be done. They carry out the tasks I cannot do. I am lucky in the sense that I have a direct payment so I am the legal employer and do not have to worry about service provision in that regard. However, I get phone calls from many other members and people who want access to PA services and are being told they are priority 3 as opposed to priority 1. The State and HSE need to start to looking away from the impairment and start looking at the individual. Why would somebody be deemed higher priority than me to get out of bed? Disabled people want to do and should be able to do in 2023 what their non-disabled counterparts are able to do and take for granted. That was highlighted within the report. Thirty years ago, when Mr. Martin Naughton and co. set up independent living, they wanted to have a life. Everyone should be able to get up or have a lie-in. When you are disabled, as the Deputy said, everything is on hold. In 2023, that is not good enough. There should not be competition whereby somebody else looking for hours in my area will affect me. We need standardisation of what a PA is across all CHO areas. If a contract is given to a provider, there must be a clear understanding of what that means. PA is not just a fancy term. It is not a nicer alternative to "carer". I do not need care any more than any other 43-year-old. I need political support; that does not mean care. I have my own brain, as many disabled people do. They have their own desires and wishes.