Ms Shelly Gaynor:

For me and the people I represent today, those in the disabled community who use a PA or want to use a PA, the biggest way of making our lives easier is to stop medicalising disability. It is not going away. It is something that will always be there. We keep talking about care and what disabled people need. What a disabled person needs is exactly what everybody else around this table needs, although perhaps in a different way. We should stop looking at disability as something that is specialised. Many of my colleagues who use PAs, many of the people I speak to every day within my job and I myself will always say that we do not need care. We need somebody to be our arms and legs or our eyes and ears. Having a disability does not mean you are an eejit. Sometimes, when people acquire a disability, there is an assumption that care will be needed and that everything is going to change. Yes, if you acquire a disability, your life is going to be different from the one you had. If you have a baby today, tomorrow or at some point in the future and the baby get diagnosed with a disability, things will be different than if you had a child who does not have a disability. However, can we stop medicalising disability? That would be a massive step.

Direct payments are not for everyone. I am on a direct payment, although not through the same model. I am on the Áiseanna Tacaíochta, AT, network direct payment. The Senator is right; direct payments are not for everyone. The reason I and many of my colleagues believe they are not for everyone is that it is too complicated to manage a business. That is what having a direct payment actually means. You are managing employees and doing taxes. I never wanted to run a company. I never wanted to be a CEO. That was never my ambition. My ambition and goal when I decided to go for a direct payment and move away from a service provider that allegedly offers a PA service was to break down some of the barriers I was facing. I was being told regularly that a PA, who is very much my arms and legs, could not hand me a tablet for a headache and yet he or she could go out and drive my car, which is a lethal weapon. I have full capacity to live my life so when I heard things like that, I knew it was time to make the jump. I rang Martin Naughton, God rest him, and said that I had had enough and needed to have more choice, freedom and control over my life.

Direct payments are not for everyone but the only reason they are not for everyone is that they are very complicated. We need to look at other models to make it easier and to give disabled people real control over their lives. I believe that should take the form of a direct payment. As Mr. Walshe, Mr. Des Kenny and I have spoken about, if you have a child in this country, you get child benefit. You are not asked anything about what you are going to do with that money. However, when it comes to disability, you are accountable for everything that you do. I understand it is State money but that is what turns people off direct payments. That is what turns my mentees off the idea of a PA service or a direct payment. It is too complicated.

As Mr. Walshe has said, people do not realise that a PA service is available and, if they do realise and are linking in with their peer mentor and their friends who have a disability, they are scared of it. An awful lot of disabled people have not been given options, control and freedom, whether as a result of their parents being overprotective or of not being able to go out and lead their life as a normal child, whatever normal is. An awful lot of the time, disabled people are being sheltered and so, when they get to 18 and are able to go to college or a post-leaving certificate, PLC, course, they do not know what to do. When I went to a PLC course provider for the first time, having gone through the special education system, I did not know what to do when the bell went because there are no bells in special education. We must allow people to make mistakes and to live a life. It is not about existing or about getting people up in the morning, putting them into their chair and saying is it not great that we have provided these thousands of hours.

I have heard a lot of figures today and they sound very good but is this funding and these hours making a difference to disabled people on the ground or are they going into administration? I have had a direct payment for the last four years and I have never been approached about administration costs. That all comes out of my hourly funding. I am very sceptical. My mother would say I have been in the disability movement all my life but I have technically been in it for 25 years. We hear the figures every budget day when we are across the road in Buswells. However, I wonder where that money is going. Is it going into administration? The people we see in ILMI are not telling me that they are being given 20 or 30 hours. They tell me a lot. I hear a lot about how bad people are feeling, how low they are and how much of a burden to their families and friends they feel. However, when you give people real choice and control and a legitimate and pure PA service, it makes a massive difference. I say that we should give the money to the disabled person, which causes people to say "Oh God, we cannot give people €100,000 a year", but we do so in other ways. We do it through child benefit every single month and nobody asks a non-disabled person who happens to be a mother or a father what they are doing with that money but, when it comes to disability, the State and the HSE are very frightened and risk-averse.

I am a citizen, as are others with disabilities. We should remember that, although Mr. Kenny and I are disabled today, anybody in this room could become disabled. For me and for my colleagues and friends, the key thing is to give people control and to stop saying there is a PA service in Cavan or Donegal when, in reality, there is not. People should really go back to the HSE, which has responsibility for this service, and look at the type of service they are paying for. People I talk to every day are telling me that they have a service on paper and that the HSE is ticking a box but that, in reality, they cannot move. They cannot go outside their house. If they do not feel like going to college today, that will be catastrophic because there may not be a PA in the house to be there for them. We are now in 2023. If you really care about disabled people's equality, you should give them power and control over themselves. I believe that should be done through a direct payment but we must make it easier for people to have freedom and control over their own lives.

Many people are turned off by the idea of a PA service because they think they will never have the capacity. I would not know what to say to them. That is because disabled people, historically, have not been given the same options or choices as their non-disabled peers. Does that answer the Senator's question? Give control to disabled people, fundamentally. Allow people to make a little mistake, like everybody else.