I thank the committee for inviting me to attend.
I left school a long time ago. It was not good for me because I did not even learn to read or write. I was not told anything about work or anything else when I was at school. I was sent to a nursing home to work. The work was okay but I was not properly paid for it and I got very little time off. I was not happy there. A social worker arranged for me to be moved me to a service. It was a big hospital and I lived on a ward there. After living on that ward for a few years, I moved into one of the bungalows on the complex and from there I moved into a residential house on Aylmer Road in Newcastle, County Dublin. Nine of us lived there, four boys and five girls. I later moved from there into independent living. When I was moved into that hospital the social worker told me I would be there for only six months but that ended up being 32.5 years.
While I was in that service, I had to work in a big workshop packing boxes and then in a newsagent's shop owned by the service. We did not get paid properly for that work. I was first paid the equivalent of 50p a week, then £5 a week and then £10 a week. It was hard work for very little money. When I worked in those workshops packing bottles, then packing boxes and making box dividers for a Smurfit company, I stopped going back to work after at 3.30 p.m. break because I was not being paid properly and it was slave labour. I called them sweatshops, not workshops. That was the name I gave them many years ago.
I was lucky and got a job with Inclusion Ireland. When I worked in those workshops, I also worked part-time once a week in the Shadowbox Theatre Company in Bray, for which I was paid by FÁS. When I went to work with Inclusion Ireland, I realised that I could not really do anything. It was a real job and I am now properly paid for working 20 hours a week. It is the first real job I have had in my life. I have been working with Inclusion Ireland for 13 years. It is one of the best jobs I have had. I applied for other jobs and submitted my curriculum vitae but I was discriminated against because none of those employers got back to me.
I got to work for Inclusion Ireland because I knew a lady called Lisa who was working there and I used to attend its meetings. They told me there was some work going and that I would be able to do it. After that, the people involved in the 360 initiative came out to the hospital and interviewed me. Lisa helped me with the interview, but I could not see her because she was in the background.
I got the message through my television, speaking for people's rights to have a proper job and proper wages.
I cannot work more than that or I will lose all my benefits. I would be afraid to lose my bus pass. It would cost about €15 return from Navan to Dublin for each day if I had no bus pass. If I had to pay that all my money would be gone, because I am only working part-time. Then I would not be able to pay my bills and my mortgage.
I would not be much better off in full-time work if I lost my travel pass and my medical card. I lost my medical card once when I was in these services. The social welfare management came to me and to my key worker and told me that I was not entitled to one. They took my medical card and they wanted the bus pass but I would not give it to them because I had to travel to work every day and I travel around the country a lot. They said I had too much money in the bank. They wanted bank statements and everything. It cost me more than €600 to get bank statements from the first day I opened a bank account. They were not happy with them, so they asked me to send them in again. It cost me another €600 to send them again. They would not do anything for me, so I contacted my TD, who at that time was Deputy Joanna Tuffy, who was based in Lucan. She helped me to get it back. Then they took it off me again, saying I had too much money in the bank. The reason I had too much money in the bank was that the service used to take money from our disability allowance every week. They used to give us €10 a week and then later it went up to €20. The most we ever got out of that was €30 a week. When Mary Harney was in the Minister for Health and Children in 2005, she said that people in these services, in nursing homes and independent living, would have to be given back the money that had been taken from them. The amount depended on how long someone was in the services. We got a small sum in 2005 and it took three years for an organisation in Tralee to sort out the money. People received sums ranging from €20,000 up to €70,000 or €80,000. I kept that money.
Later on, I went to a meeting with my boss, Mr. Paddy Connolly, the CEO of Inclusion Ireland. I heard about an organisation called Possibilities Plus. That is a group that helps people to move out of services, independent living and nursing homes and live a life of their own. We started having meetings with the service and the HSE. It took three years for me to access that funding from the HSE and the services and to find a place to live. The anti-bullying group is in DCU. I am a part of that group. That group and Inclusion Ireland helped me to get my own place.
When I started at Inclusion Ireland I used to get everything wrong because of my reading. They organised for me to attend reading and writing class with the national learning centre in Mountjoy.
I asked them to see if they could get a course for me because I was doing everything wrong. I was putting letters in the wrong envelopes and putting the wrong addresses on envelopes. They were all coming back. Inclusion Ireland was losing a lot of money in stamps, so the management got me a place on this course. This course went on for about seven years, but they told me at the beginning it was only going to be a two-year course. I used to go in every Friday from 10 a.m. to 2 p.m. before I went into work. I had homework, which I did for two hours after work on Thursday nights before I went in on Friday. When I did that, it refreshed my mind for the work I was doing in the college with a one-to-one teacher.
It was great. I can read and write now and I have also learned to use computers. My second chance at education really helped me in my job. It helped me to get where I am now. I could not read, write, use computers or anything, even photocopying. Now I can do it all with the support of Inclusion Ireland. I take part in advocacy groups about rights and independent living and I am involved in focus groups. I have been working with them for 13 years. I think the staff are A1.
I was still unhappy living in the service. I had moved to a group home, but had no choice in who I lived with. I could not choose my support worker. I was not at the interviews to choose who I wanted to work with me. People were just thrown onto a case. The service would simply say that a certain person was my key worker. That is wrong. People with disabilities should have the right to be at those interviews and choose who they want to support them in living a good life. I wanted to move out. I started to fight to get a personal budget. The service agreed to give me enough money to get eight hours of support. The budget took three years, and it took three years to find a place with the help of Inclusion Ireland, the anti-bullying group, and Possibilities Plus.
My new support service is Possibilities Plus. That organisation has my budget and pays a person to work for me for eight hours a week. He has to do eight hours a week, or 32 hours a month. I was the one who interviewed him, and for the first time in my life I chose the support worker I wanted. It was a big change for me when I moved out. I could not leave the house for the first six weeks, because I was used to support around me the whole time. Now I get out of the house. My support worker helps me to do that. He gets me out doing activities, and he helps me make friends. He helps me with what I cannot do, but I tell him what I want done. It is not about what he wants done, because I am his boss. I am the one who employed him. The HSE gives him some of my budget, paid via Possibilities Plus. If he does not do that eight hours a week, we can bank them for something else later on. I said to him when I first moved out that I needed a bit of support when I went to certain places. Now, I can do it all on my own.
I bought my own apartment in Navan and it is great. I picked the paint, the bed clothes, the floors and all the electrical stuff myself. I never did that before. I got a loan from the credit union in Rathcoole. I repay it out of my payment from Inclusion Ireland at the end of every month. The money goes to the credit union on the first of every month because I do not get paid until the end of the month. I have a new life living on my own because I never lived at home with my family. I was always away from home. I lived in services, in boarding schools, and did not get a proper education until I came to Inclusion Ireland. Fair play to it for organising all this for me and for supporting me over the last 13 years in which I have been working with it.
Brian is my support worker. I interviewed him and chose him with Dr. Bob McCormack from Possibilities Plus. I went to a meeting with Mr. Paddy Connolly in Leopardstown and I heard about Possibilities Plus. I told the people there that my family and the staff did not want me to move out of the services and that they would not let me move out. I said that I should get what I want in life and that it is not what they want. I kept fighting for it but it took three years of meetings with the family, with Inclusion Ireland, with the organisation and the HSE. Someone said this person has plenty of money and he should be able to go out and buy his own place. I just said to myself that I would think about it.
I thought hard about what to do with the money from the Government in 2008. I put it into my own bank. I told the staff I was not putting it into Bank of Ireland in Rathcoole because everyone else was. It was my own choice to do that. I brought the cheque in and lodged it myself. I did that for the first time in my life. After that, they did not have a leg to stand on because I was able to open an account myself.
Brian helped me to get linked in with lots of things and services in Navan. I go to bingo on Tuesday nights and for the first couple of months, he used to come with me to support me. I said to him that I did not want him to do that anymore and that we could bank those hours for something else. He stopped coming with me and now I go on my own. People keep a seat for me every week. I got to know people from going to bingo. That did not happen when I was in the services because I never got that chance. I go to a trad music session twice a week. I go the Central Bar and I go to The Lantern in Navan on Wednesday nights. I meet people in the pub and I got to know the people who play the music there. It is the same in the Central Bar where I got to make new friends there. I never got a chance to do anything like that when I was the services.
I go to the Special Olympics through the Arch club in Navan which is for people with a disability. They play games for two hours every Thursday night and the club picks people to go to the Special Olympics. The first year I went, the people at the club said I was good at table tennis and put me through to the Special Olympics for the first time. That was the first time in my life I had ever engaged in activities. I went to the Special Olympics and made the table tennis final. I came second. A year later I got a card that stated I would be part of the Special Olympics for the following five years.
I do all of my own shopping and cooking. Brian might have to come with me sometimes to help if I am going to buy clothes or anything like that because I do not know how to match clothes. He also taught me how to cook. I have friends in Beaufort in Navan who I go to on Mondays for a bit of lunch. They support me and also taught me how to cook, but I can do it all of it on my own now. If Brian is working with me at night time, I normally have dinner ready for him when he comes and if he is working with me in day time, I have breakfast ready. This only came about because I met Dr. Bob McCormack one day. I was lucky, but many people with disabilities are not so lucky. They have not moved out of the services. Years ago the Government stated people in the services should be moved out to live independently and choose their own support services. I do not know when that is going to happen. I was one of the lucky ones because I had to fight all my life for everything I wanted. A personal budget helps me to live a life of my own. It is great having my own budget and to be able to look after it myself, with Possibilities Plus, the HSE and Brian working with me. From the budget, Brian gets something like €50 which we can use to go out for a cup of coffee or a scone. We cannot go for a meal or anything like it because there is a limit to the money available and I cannot go over budget or the hours allocated. If I did, Possibilities Plus would have to pay extra, but it does not have the money to do so. It is also great to be able to hang on to my own budget through my organisation.
I thank the committee for listening to me and having me here. I hope everything goes well for everyone here.