Supports for People with Disabilities: Discussion (Resumed)

I welcome everyone to this meeting of the Joint Committee of Employment Affairs and Social Protection, the Joint Committee on Education and Skills and the Joint Committee on Health. Colleagues with mobile telephones are asked to turn them off or to switch them to flight mode because they interfere not only with the meeting but also with the recording and the broadcasting of proceedings.

We are in an unusual setting today in that there are three joint committees meeting together, which is not the norm. This arose out of a piece of work that was being done on labour activation and we realised that some of the issues were relevant to three Departments. This is the second in a series of three meetings and the issues that are highlighted will be presented to the three Departments a few weeks hence. This committee will produce a report and make various recommendations. That is the background and the format.

Before I call the witnesses I wish to record an apology from Deputy Harty, the Chairman of the Joint Committee on Health. He is on his way from County Clare but there was a traffic accident en route that has resulted in significant delays. He was not involved in the accident but has been delayed by it. He may well join us before the meeting concludes. The Chairman of the Joint Committee on Education and Skills, Deputy O'Loughlin, is with us. She might wish to say a few words after which it will be over to our witnesses.

On behalf of the Joint Committee on Education and Skills, I am delighted to join the Co-Chairman in welcoming all the witnesses. We had a very interesting first meeting on this important topic. We realised after that meeting that the most important voices are those of the people who have the lived experience. That is not to take away from the very committed individuals who gave presentations on that day but, having discussed it, we decided that we needed to hear more of such voices. I have some experience in this. I have a brother with Down syndrome who has a very important job. He views his job as more important than mine. He certainly takes as much joy and pleasure from his job as I do from mine. I also worked with Special Olympics. I am conscious of all we need to do as a society and as legislators to help support those who may find it more difficult to access education or jobs to get such access and to achieve their full potential. As an aside, the Joint Committee on Education and Skills is holding a meeting at 3.30 p.m. at which it will examine barriers to education for vulnerable groups, so it is continuing the theme.

I look forward to hearing our guests' stories and to engaging with them in order to discover what we can do to help. I thank Senator Dolan for his initiative in setting this up.

I should point out to everyone present that the three committees are working collaboratively. Behind the scenes, we have been very fortunate to have had assistance from Senator Dolan. I do not mean me personally but rather the clerk of the committee. The Senator has facilitated much of what is happening. Does he wish to comment?

The only comment I wish to make is that for the public this is not a big deal but it is in terms of the future for people with disabilities, with three committees of the Oireachtas meeting together and listening, which they do not normally do, because so many of the tricky bits are between Departments and agencies. The more that happens, the better. I particularly thank Ciarán and Doreen who put all the bits and pieces together. I should mention that Senator Alice-Mary Higgins worked on the activation piece in January and matters moved on from there.

We have a model here that we can tweak. I am delighted. I know some but not all of the witnesses. I am looking forward to listening to their contributions and trying to figure out where the gaps are so that we can prepare a report that is people centred and that points to the snares that need to be untangled. That will bring us into the budget cycle and next year. It is all about implementing the UN Convention on the Rights of Persons with Disabilities at this stage.

I thank Senator Dolan. I would like to formally welcome those who will be making presentations, namely, Ms Jessica Ní Mhaoláin, Mr. Padraic Moran, Ms Eileen Daly, Mr. Gary Kearney, Mr. Paul Alford and Ms Dina McAnaspie. I will afford all of our witnesses the opportunity to make their opening presentations uninterrupted and, after that, my Oireachtas colleagues-----

I apologise for interrupting but I wish to inform the committee and the witnesses that I will have to leave at about 12.25 p.m. to attend a briefing on the Education (Admission to Schools) Bill. I hope to catch up on this discussion afterwards.

I thank the Deputy. As I was saying, all of the witnesses will have an opportunity to present and then my Oireachtas colleagues will have a chance to engage with them. The first person to present is Ms Jessica Ní Mhaoláin.

Ms Jessica Ní Mhaoláin

Ba mhaith liom buíochas a ghabháil don choiste-----

I am so sorry to interrupt but I forgot to formally advise everyone of the situation with regard to privilege. Witnesses have been asked to make their opening statements and in that regard I must draw their attention to the fact that by virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of their evidence to this committee. If, however, they are directed by the committee to cease giving evidence on a particular matter and continue to so do, they are entitled thereafter only to qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given and asked to respect the parliamentary practice to the effect that, where possible, they should not criticise nor make charges against any person, persons or entity by name or in such a way as to make him, her or it identifiable. Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official either by name or in such a way as to make him or her identifiable.

Once again, I apologise for interrupting Ms Ní Mhaoláin. The floor is now hers.

Ms Jessica Ní Mhaoláin

Ba mhaith liom buíochas a ghabháil don choiste inniú for the valuable opportunity to explain the challenges I have faced as a blind person during my education and, more recently, in gaining employment. I would like to begin by referencing evidence provided by Ms Joan O'Donnell of the Disability Federation of Ireland to this committee in January 2018. She informed members that, between 2013 and 2016, unemployment dropped by 5.3% but that the rate of employment among people with disabilities increased by just 0.4%. Some 71% of adults of working age with a disability are not in work. This is a stark figure. More than two thirds of people with disabilities are unemployed. I have a job. I am part of the one third but it comes as no surprise to me that I am in a minority. I have a good job that I enjoy very much but I did not land there overnight. I would like to stress to members that so many others like me face the challenges that I have faced in looking for a job.

I have about two feet of clear vision and after that my world is blurry. I struggle to recognise faces, cannot read message or notice boards and need assistance in the simplest activities of life that most people would take for granted such as cutting bread or anything involving hand to eye co-ordination. When I started school in the 1990s, supports for someone with my limitations were few and far between. In 2002, after repeated assessments and appeals to the then Department of Education and Science, I was granted the use of a laptop and given some resource teaching. As I am blind, I rely on sound, which is my primary way of learning. I was unable to read and write properly until I was almost nine. I was eventually granted a special needs assistant which enabled me to learn properly for the first time in my life. However, when I finished primary school I lost all of these services, which do not follow the student into second level education. At around the same time I was granted a medical card which was used to purchase low vision aids such as magnifiers, my white cane and monoculars which I use for notice boards. This timing is really important, given that I was in third year before I was granted any educational supports in school so I would have relied heavily on these low-vision aids.

Once my supports were in place my school marks began to pick up. According to my academic records, any time I was without supports my marks would drop, but as soon as they were reinstated my marks would improve again. To me that is simple proof that when persons with a disability are offered the correct supports in education they are just as capable of doing well as their schoolmates. I firmly believe that if my supports had been consistent throughout secondary school, I would not have failed examination after examination for two years. I also believe that if I had access to a lifelong assistive technology programme, as suggested by the Disability Federation of Ireland, DFI, and Enable Ireland in their 2016 discussion document, my school days would have been as normal as those of my classmates, instead of the constant struggle they were.

My special needs assistant, SNA, hours, were halved at the start of sixth year, which had a serious impact on my ability to revise and was horrendously stressful. I was unable to keep up in classes and had to be home-schooled for the remainder of the year with grinds to get me through my leaving certificate. Once I got to college I was thrilled to discover that things were much different. The disability support service in University College Cork could not have been more supportive. I was offered grinds and assistive technology and I had a note-taker. I was allowed to learn at my own speed and my independence, particularly through assistive technology, was encouraged and hugely supported. I completed my BSc in Public Health in 2014 and followed on with an MA in Government and Politics in 2016. My master's thesis focused on the impact of the Education of Persons with Special Educational Needs Act 2004 on children with disabilities and the results are as I expected. Children with disabilities are not being supported in the way the legislation intended because, for the most part, it has not been meaningfully implemented.

After spending almost six years in college, I found myself struggling to find work, even with my qualifications. As soon as prospective employers saw my cane, there was a pitiful look and I would receive the "we regret to inform you" letter a week later. I have a drawer full of such letters at home. To counteract the blank spaces that were quickly filling up on my curriculum vitae, I volunteered or interned in sectors in which I had an interest. It was only last November when I attended an interview where my disability and my cane were not given a second glance by the interview panel. I succeeded in getting a job as a constituency assistant to Liadh Ní Riada, the Sinn Féin MEP for Ireland South. I have all the supports I could ask for in this job. I have a large monitor and a scanner and these supports provide me with the help I need to do the job to the best of my ability. My contract has just been renewed so I must be doing something right. This is surely anecdotal evidence that once a person with a disability is given the correct supports, he or she can work on a level playing field with colleagues.

However, with the good news comes a setback. When I was granted my medical card in the early 2000s I had more sight than what I have today. I have lost some of my peripheral vision in the past few years. I have had my medical card for almost 20 years. It was granted to me on medical grounds. However, when I notified the Health Service Executive that I had begun working my medical card was revoked. There was no appeals process open to me. If I want the medical card back I have to begin a new application process, which will take a number of months and will probably be refused again on financial grounds. I am highly unlikely to get my medical card back if I continue to do the job I worked so hard to get. This puts a financial strain on me which is not faced by people without disabilities. The HSE seems to believe my blindness was cured overnight when I got my job. It has not factored the cost of low-vision aids covered by my medical card into its online means test. There is no set price for these aids. Depending on the aid a person needs, the cost could be €100, €200 or €2,000 and upwards.

The current funding model for assistive technology in the workplace is also completely outdated. The HSE did not factor in the number of doctor and hospital visits I have each year. I had well over 30 such visits last year. While my financial circumstances may change throughout my life, my rights to health care, as a person with a disability, should never change. I am very happy the committee is investigating labour activation for people with disabilities because it is very much needed and welcomed. However, I earnestly appeal to the committee to consider the importance of lifelong access to assistive technology and medical supports when it publishes its report.

Challenges are faced by people with disabilities as they try to find employment. These challenges are not faced by people without a disability. Under the UN Convention on the Rights of Persons with Disabilities, people like me have a fundamental human right to full and effective participation and inclusion in society. However, that right is of little use unless the correct supports are in place along the way. People like me need assistive technology. We need consistent educational supports and accessible facilities to allow us to participate on a level playing-field with our peers. Accessibility is not just for buildings. It is for every aspect of our lives in society.

Mr. Padraic Moran

Before I start I want to thank Senator Dolan, Mr. Ciarán Delaney and and Ms Doreen Magee for giving us the opportunity to address the committee today. I think it is vitally important to get evidence and hear from people that are actually affected on a daily basis and hear about what we go through.

To give the committee a bit of background about me, I am 34 years old. I have cerebral palsy which affects my motor control, so I require a motorised wheelchair to get around. I also have a task dog named Gail, to retrieve dropped items, help me take my coat off and perform basic tasks. Due to this, I no longer need as much help as I would. This has been provided to me by Dogs for the Disabled. I am a two-time Paralympian and a former world champion in the sport of boccia. I have just completed my degree in communications at Dublin City University, and I also compete for that university in powerchair football at European level.

Growing up in Ireland with any type of impairment is hard, because it is always a battle to access service that one needs. I have been very lucky in that both my Mum and Dad instilled a good work ethic in me and always told me not to accept the norm. Growing up in Ireland, one wonders whether one will be lucky enough to gain employment. The answer for me is "yes", despite the fact that the system does its best to keep a person like me claiming social welfare. In 2006, I started working for East Coast FM in production. The station gradually upskilled me to mixing and producing, before I moved into the role of sports reporter on a freelance basis. The management and staff of East Coast FM have always challenged me to become the best that I can be.

In 2014, I secured a full-time job at Sky Ireland. It is an outstanding employer with a world-class inclusivity policy, and any supports I have required have been put in place. My colleagues are the best that anyone could wish for, and they really take excellent care of Gail and me. I am now a service and loyalty specialist, having been promoted. When I started working, I lost my disability and medical card after a few months, and my travel pass two years later. The income disregard of €120 has not been renewed since 2006. That really needs to be looked at again. The members of the committee also might want to factor in that the disability allowance payment is exactly the same as the jobseeker’s allowance payment. Unemployment is a temporary condition, while I think the committee will accept that cerebral palsy, autism and most other physical disabilities are permanent. The State does not factor in the extra overheads that people with disabilities encounter every day. There is also no consideration in the income tax system of the extra costs that a person with a disability has to face.

I require a personal assistant to help me function, which I get for ten hours a week. These ten hours were allocated to me in 2011, and that plan has never been renewed or updated, nor has anyone ever asked me if it has changed. Last February, I was afforded the opportunity to address the Joint Committee on Transport, Tourism and Sport on the difficulties that I was facing with Irish Rail. After giving evidence to the committee, I was targeted because I dared to speak out to the media and expose the challenges that a person in a wheelchair faces on a daily basis. As most of the members will know, Mr. Delaney is very good at what he does. He agreed to advocate for me and help me to resolve those issues. He attended a meeting with myself and the new CEO, Mr. Jim Meade. Ciarán dissected the evidence and presented my case, outlining what I was subjected to. In fairness to Mr. Meade, he acted on that. My fine was rescinded and I was offered lots of help. In that regard, I would like to thank Irish Rail and the new chairman, Mr. Frank Allen. Irish Rail is becoming a better company, trying to improve services for people in wheelchairs.

Another part of my problem with the current system concerns my supports.

Twelve per cent of my monthly salary is spent on funding additional personal assistant hours because I cannot function on ten hours per week. I have the long-term illness coverage because I have cerebral palsy. I am also asthmatic but because asthma is not a cerebral palsy related condition my inhalers are no longer covered under this scheme.

In terms of education, I have been really lucky in terms of the supports provided to me by Dublin City University. A friend of mine wants to pursue a course in a college of further education but she is being denied access because the college refuses to purchase a hoist or put in place supports to enable her to use the toilets. Senator Dolan and Ciarán Delaney have done a lot of work to improve access. This is another barrier being put in the way of a person trying to access a fundamental service. People with disabilities are often forgotten in the crossfire. We are not seen as a large voting group because we cannot engage in mass protest and so it is slightly easier to make cuts to our services. There are many advocacy groups and people on large salaries making decisions that affect us but up to now engagement with people with disabilities who face additional overheads in this regard has been rare. It is important that meetings like this continue to happen.

A few months, I had to have my glasses upgraded. When I applied for PRSI relief in an effort to recoup some of that cost I was told I was not entitled to it because I had not worked for five consecutive years. There is supposed to be a five-year transition period for people who move from the disability allowance to employment but that transition period was never applied to me. My allowance was taken from me straight away. When I engaged with the then Department of Social Protection I was told by a member of staff that if I returned to part-time work I would get all of my benefits back. This is a damning indictment of the system. If the Government continues to decimate supports, people with disabilities will not move into employment. There are plenty of people with disabilities who are able to work. However, if in doing so their supports are withdrawn it will have a massive impact on their lives. We are supposed to be afforded fundamental human rights. The UN Convention on the Rights of Persons with Disabilities, UNCRPD, has been ratified but the protocol has not. In Ireland, we do little bits but we do not do enough. People with disabilities get a few crumbs every now and again to keep them happy. We need more than token gestures, we need action. I take this opportunity to thank the Minister for Transport, Tourism and Sport, Deputy Ross, for commencing the process of appointing people with disabilities to the boards of public transport bodies and to Sport Ireland to help improve fundamental services. All Ministers and committees should follow this lead and actively engage, as we are today, with people with disabilities to ensure the system works more conducively for people with disabilities.

I thank Mr. Moran for his presentation. I now invite Ms Eileen Daly to make her presentation.

Ms Eileen Daly

I thank the committee for inviting me here today. I propose to use this opportunity to speak from personal experience and also as a professional working in the area of education supporting people with disabilities to transition from further and higher education into employment. I graduated from University College Dublin in 1994 with a social science degree, following which it took me about one year to enter employment. I can categorically say that this was possible because I had a personal assistant throughout my education. I was also fortunate enough to be able to use my personal assistant service to transition into employment.

The reason for that is I came into the system under the old conditions. Therefore, I did not have to give up my personal assistant service after I graduated from college. Nowadays, the system is very different. The funding structures, etc., are different. When a young person graduates from further or higher education, he or she no longer has an automatic entitlement to a personal assistant when he or she enters employment. Obviously, not everyone requires this support. It is required by many people with mobility issues and physical disabilities.

I would like to explain what personal assistants do for people in their workplaces. My personal assistant assists me in doing my job. I am employed by my employer. I am the person with the qualifications to carry out my role. My personal assistant follows my instructions and carries out tasks under my supervision that I am physically incapable of doing. Everything comes back on me as my ultimate responsibility. My personal assistant is not a burden on my employer. I employ her. It is really important for this to be clearly understood from an employer's perspective. This service or entitlement is no longer provided to many young people, and indeed older people. I categorically believe this is a fundamental barrier to employment.

In recent years, I have been working in the further education service with the Rehab group. I provide a service to people who are transitioning from special education into the mainstream system. Many of these people have been told from a very young age that they are failures and cannot and should not have expectations for themselves. Their parents also hear this when their children are very young. Part of my job is to challenge not only the internalised perceptions of these people, but also the perceptions of society at large. It is worrying that numbers have been decreasing instead of increasing in recent years.

I thought about this aspect of the matter as I prepared to come to this morning's meeting. In Ireland, we are very good at getting European funding and running very successful projects that enable people to try out things. The outcomes can be very successful. I was fortunate enough to be involved and employed in the career pathways project, which was initiated by Trinity College. The purpose of the project was to support people with disabilities as they prepare to make the transition from study to employment. The outcomes of this project, which enabled and supported people in getting jobs, were very positive.

During the course of this three-year project, I helped people with everything from CV preparation and interview skills to disclosure of disability. How should someone who has a hidden disability disclose that to a prospective employer? At what stage should this be done? How can one become confident in articulating one's needs and selling one's qualities? How can one demonstrate to oneself and others that one has a valuable contribution to make in the labour market? Despite all the positive outcomes - this project has won two awards for the substantial impact it has made in people's lives - unfortunately it was decided to discontinue the project when the funding dried up.

Many people were left without a service, essentially. People's lives are worth much more than that. I am one of the lucky ones. I should not feel lucky. This should be an automatic human right for everyone.

The alarming lack of a comprehensive career guidance service in special schools has been highlighted in the media in recent weeks. It is old news, but it really has to change. It demonstrates the lack of value placed by the Government and by society at large on anyone who is different or does not fit the mould. If there is one message I would like to get across to the committee today, it is that there needs to be more communication between the Departments of Health, Education and Skills, and Employment Affairs and Social Protection. It is only through constant communication, dialogue and negotiation that the issues which prevent people from accessing education and employment can be addressed.

As Ms Ní Mhaoláin and Mr. Moran have demonstrated, people with disabilities want to work. From my perspective, it is very uncomfortable to be asked by parents, and others who see me performing in my job, to explain how I have succeeded. When I share a certain amount with them, as appropriate, they ask me how they can get what I have. In such circumstances, I have to tell them honestly that they do not have an automatic human right to that. All I can do is give them some pointers and guidelines on how to advocate for themselves. In my opinion, that is no longer acceptable in 2018.

I thank Ms Daly. She said she is hoping for better communication between the Departments of Employment Affairs and Social Protection, Health, and Education and Skills. I hope this is part of exactly what she is referring to.

Ms Eileen Daly


Our next speaker is Mr. Gary Kearney.

Mr. Gary Kearney

Although I am 54 years old, this me is nine years old. Nine years ago, I was mugged and violently assaulted. I suffered multiple fractures of my skull and multiple brain injuries. I am deaf in one ear and I have various other issues. I am also invisible because I look normal, whatever that means. I was working for a semi-State company. I had been there ten years. When I got out of hospital, I walked out the door with no support - no medical appointments, no support numbers, no occupational therapy, nothing. I walked out the door 19 days after receiving a brain injury. I had to get on with my life with no support from anybody. The semi-State company for which I had worked for less than ten years was less than supportive. It forced me to go back to work after three months. It insisted that there was nothing wrong with me. Indeed, my bosses said I was not deaf and suggested I was making it all up.

This is the unfortunate part of being invisible, or what I normally call "hidden". I am high functioning. Brain-injured people who look brain injured or disabled have a large advantage over me. I would not call it a slight advantage. The next three years were hell. They gave me no support. When I found DeafHear in North Frederick Street, I walked in the door and said that I was deaf in one ear and had suffered brain injuries. I asked the people in DeafHear for help and they gave it to me. I also found Headway Ireland, which has saved my life twice at this stage.

It is a great support group which has supported me to this day and, I suspect, it will probably do so for the rest of my life. I had to knock on that group's door and say: "Excuse me, can you help me?"

I taught myself to walk again, as I am deaf in one ear and I tend to fall over. I was falling over a lot. I have some false teeth, and I am due to get some more, as I kept falling over. I got no physiotherapy to help me with my vertigo and deafness.

Meanwhile the company I worked in was trying to sack me at every hand's turn. Eventually, I could not take it anymore and I went out on sick leave again. I got a letter coming up to Christmas advising me I was being sacked because I had no underlying medical conditions. I have that letter from the chief medical officer of a semi-State company at home. The union backed me. It had an extraordinary meeting with us and the chief medical officer, for the first time in the history of a semi-State organisation, changed his mind and gave me my superannuation over Christmas when the union was closed and I could not get any support.

I was 48 years old and had been thrown on the scrap heap. I applied for social welfare benefit and I was awarded an invalidity pension. God help one if one is on an invalidity pension, as one cannot even volunteer to do anything, because if one does, one will lose benefits. I tried to apply for a hearing aid. I do not know if the members have noticed me turning around drastically to listen to the speakers to my left, which is my deaf side. DeafHear helped me, which was great, but it could not supply me with a hearing aid because it is granted on basis of having of a medical card, not on the basis of pay related social insurance, PRSI. That is another one of those invisible barriers or traps about which Senator Dolan spoke.

When I awarded an invalidity pension I applied for rent allowance and I was told I would get it. That was grand. I submitted the form and waited. They said it would take a few months as there was a backlog, but nothing happened. I rang the Department and was told it had moved offices and that there was a backlog so I waited. I was still paying rent out my superannuation payment, which was rapidly decreasing. That went on for nine or ten months. I had to submit the form three times and on the third occasion, I was told I would not be granted rent allowance. I had to pay my landlord over half of my welfare payments, bearing in mind my level of payment is on the poverty line. That was the position I was in for another few months.

I was on the housing list. I was told by the Department that if I was on the housing list, I would get rent allowance. It was great to hear that, as I had been refused it previously. I went into the office to apply for rent allowance and was awarded it, which was great. Rent increased. I was dutiful and submitted the form but I was cut off again.

I dealt with forms all my life, specifically during the past 13 years. When one goes into a social protection office there is no communication and it as if it one should not talk. I wanted to get medication because I have brain injuries and have issues sleeping. They wanted to me give me benzodiazepines. I wanted medication I could buy across the counter in Walmart in the US or in any chemist in Spain. I tried to explain that but I was told that I was not 55 years of age and that I was not getting it. I replied I was disabled, have brain injuries and could not take that medication, but they said it did not matter.

If the members look at this line of people, they will note we are all disabled. However, we are all different. We all need to be spoken to, not at. Too many times we are spoken at. I was very fortunate two years ago with the help of Headway to make contact with the Disability Federation of Ireland, which has been wonderful and has helped me to do these types of things. I was involved in Headway's I See Beyond campaign and I did not realise at the time I was asked to be a part of that for my own benefit. The idea is to see beyond the disability, to see the person. I was fortunate enough to be in Brussels as a representative of Disability Federation of Ireland for the 4th EU Parliament of Persons with Disabilities. I was involved also in the Make Way Day campaign, the aim of which is to get able bodied people to think about us for a change, to step out of their position and try to see matters from our side.

A person in a wheelchair was left on a roadside last week because able bodied people would not get out of the way. We face that every day. When we deal with Departments it the same, if not worst. I am not the same as Jessica or Eileen but all Departments treat us the same way. We are not the same; we are all different. They do not talk to us. I cannot work as I am not allowed to work. However, I have a radio show every Thursday. It is Viva Vox Dublin City FM 103.2, a disability show with a difference. I can work and I know I can but I am not allowed to do so. My former employer threw me on the scrap heap and the Government seems to want to box me into a little corner until I reach the age of 66 and then, from its viewpoint, I stop being disabled. At the age of 66 we stop being disabled and just become old. That is the reason for the 13.5 %.

Do members know what it feels like to be constantly pushed to the edge? Perhaps they did not but maybe they do now. I thank them for this opportunity.

I thank Mr. Kearney for his presentation. The next person to present is Mr. Alford.

Mr. Paul Alford

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.

I thank Mr. Alford. I have the same problem in matching clothes when I go shopping. I call the final person to present, Ms McAnaspie.

Ms Dina McAnaspie

I am 22 years old and attend a day service. I work in a bar from 2 p.m. to 4 p.m. on Wednesdays and Thursdays, but I want to get a full-time job. I work on my CV with my key worker. I have looked for jobs in shops, but I am finding it difficult to get one. Ms Ailish Ryan will help me talk to the committee about my story.

Ms Ailish Ryan

I am thankful for the invitation and this opportunity. I am now going to make Ms Dina McAnaspie's contribution on her behalf. It reads:

I attend a day service three days per week and work part-time two days per week. I work in a bar on two-hour shifts, that is, four hours per week. I really enjoy working and my goal is to work in a full-time job in retail in the future. However, I have come across many things that have made getting a job very difficult for me. When I was younger, I attended a special school. There was no career guidance in my special school, so I did not get the same advice and help that other students get in mainstream schools across the country. As well as this, there was no option to go into transition year in my school. This means that I did not get the chance to get work experience in transition year the way that students in mainstream schools do. When I was in school, I did get to have some work experience working in a charity shop. This was a really great experience and it gave me a taste of what having a job was like. I also got to experience what it is like to have a job. I believe there should be more work experience opportunities available for people with intellectual disabilities.

When I left school I attended a day service. I really enjoy attending my day service but at some point I want to be able to move on and get a full-time job. I want to work just like everyone else. At the moment, the staff members and my key workers help me with applying for jobs. They help me put together my CVs and send them to workplaces. It can be very hard to get a job, however, and it is also very hard to get the work experience one needs to get a job.

One of the problems that many people with intellectual disabilities come up against is that if we get a full-time job and leave the day service, there is no guarantee that those services will hold our places. If things do not work out in a job, some people are left with nothing afterwards. I feel that people with disabilities should be supported to get a job. They should be supported during the job, if needed, and also supported if things do not work out. At the moment, the system puts people off trying to get employment in case they lose their supports and services. I thank the committee members for their time.

I thank Ms McAnaspie and Ms Ryan. The presentations were excellent. They were personal and very insightful on the various challenges all of the delegates faced. As members will be going to the Dáil Chamber at 2 p.m., we have about half an hour left. I invite colleagues to make comments or ask questions, after which delegates may respond. I ask all members to keep an eye on the clock.

I thank all of the delegates for their bravery, honesty, integrity and sincerity in telling their stories, which are vital to the work we are doing. We may need to bring in employers to talk to them about the barriers they may face in order that we can try to get over some of them. While talking to prospective employees, we also need to consider perceived challenges or barriers. Much of the time, they are perceived. There may also be nervousness. There is considerable work to be done in that regard.

I thank Ms Ní Mhaoláin for telling us her story. The statistic she mentioned - 71% of adults without a disability - is very stark. She argued for lifelong access to technology. That is really important. She lost her medical card and is saying some of the aids she needs vary in cost. Will she indicate what the cost to her has been since she took up her job in November?

I thank Mr. Moran for his story. Fair play to him for fighting for access to rail services. It is really important. I live in Newbridge. There is a lift there, but one has to give 24 hours' notice to use it, which is absolutely ridiculous. Since it is in place, it should be serviced all the time.

Mr. Moran referred to 12% of his salary going on additional PA hours. The difference between Mr. Moran and Ms Daly is that Ms Daly was in the system before. It has made a difference to her life, but Mr. Moran has to pay extra to try to live a normal life.

That is really important to note.

For Ms Daly to have the system she has is really important, as is the fact that her circumstances can be compared with those of someone who does not have it. There could have been a fundamental barrier to employment for Ms Daly. Therefore, we need to examine the aids and supports. This is why I believe we need to bring in prospective employers to talk about these issues. Ms Daly is absolutely right that we need constant dialogue and negotiation.

To Mr. Kearney, I say that I sometimes believe having an acquired brain injury is nearly the most difficult place for anybody with a disability. It can be quite difficult to access supports. There is a really grey area. So much needs to be done in this regard. That one cannot volunteer with an invalidity pension is an issue. There is so much one could do as a volunteer for so many organisations. It is wrong that we cannot get volunteers.

Mr. Alford addressed the area of exploitation really well and said some people in a vulnerable position can be exploited. He has certainly fought the good fight in terms of getting the services he needed. He should have and could have been able to learn to read and write when he was very young. It is so sad that he did not get the chance to do that at that point. Life could have been quite different at that stage. I refer to having adequate literacy and numeracy. When my brother went to a special school, my mother was told that he would not be able to read or write. She said he will read and write. He is one of 11. I am the eldest of 11 children. By the time my brother was five, he was reading and writing. Every day, his encyclopaedic knowledge of everything amazes me. He is always reading and writing. It is so wrong that Mr. Alford was in the position he was in. He has really fought back. The next time he comes here, I hope he brings lunch for all of us. He is a very good chef.

I thank Ms McAnaspie. She touched on the area of transition year, not having the possibility to do work experience and the fact that there is no career guidance. I intend to raise this at a meeting of the education committee. Mr. Moran mentioned his colleague with the hoist. This was mentioned to me. I am happy to raise any such specific issues with the education committee with a view to trying to help. I thank all the delegates so much. I look forward to working together with John, Michael and Senator Dolan to determine how we can help in the future.

For the witnesses, the gentleman who has arrived and who I said would be a bit late is Deputy Michael Harty, the Chairman of the health committee. He was delayed on his way here today. I thank him for attending. Does he wish to speak now or will I let some of the others speak?

I will make just a few comments. Senator Dolan will be able to fill in for me. I apologise for being late. There was an accident on the N7 on the way up and, unfortunately, we were diverted off the motorway. I am sorry to have missed the personal testimonies. I was in the audiovisual room a number of months ago when Senator Dolan brought in witnesses to give their life histories and to outline how their disabilities affect them. I do understand the position but, unfortunately, I did miss the delegates' contributions this morning.

From a medical perspective, I believe in the importance of work to health. Work is like a drug. If people who have a disability can get a job, it lifts their personal status and self-esteem, and it also benefits them in so many other ways. Work is like a drug in that it can benefit people greatly. At meetings of the health committee, we have seen that health is one aspect of disability but there are many others. There are many social determinants of health, including education, about which we have been speaking this morning, and housing, transport and social protection.

These all tie in with providing an enhanced quality of life to people with disabilities. In rural Ireland, the lack of transport is a huge inhibiting factor for people in terms of getting employment and access to work.

Personal budgets should be introduced in the near future because they give people with disabilities a totally different aspect to their independence, meaning that they can decide how to live and how their supports are used to their advantage, because each person is different.

I welcome the witnesses. Some of them are not strangers to us but it is probably the first time others have appeared before any committee, which, I know, is a daunting task at the best of times. We are here to help and to put a pathway in place to assist the witnesses and the people they have quite ably represented this morning.

Is Brian here with Mr. Alford today? Mr. Alford mentioned him quite regularly in his contribution. I do not know who is the more tolerant of the two.

I have read the submission from the Disability Federation of Ireland, DFI, which touched on all of the statistics and figures in terms of unemployment levels. That is all fine. However, to hear at first hand about the barriers in respect of getting into work and sustaining employment that are put in place by the State is critical. Some announcements have been made in the past year concerning medical cards and the travel pass. Last year, the Taoiseach announced that anyone in receipt of a long-term disability payment who gained employment could retain those benefits for five years. I am not sure of the views of the witnesses on that matter, but I do not believe five years is long enough. It is a serious issue which many people with disabilities face. Mr. Moran is from Bray, my home town, and I know him. He has had many battles with our public transport system, including, as one of my colleagues mentioned, having to give notice 24 hours in advance when travelling on public transport. Even with that, there are huge failures within the system. Having a free travel pass is one thing, but having a public transport system that actually works is another. Many people have to rely on taxis. Mr. Moran mentioned in a conversation before the meeting that he might pay up to €500 a month for taxis because of the failures of the public transport system. If anyone else has issues such as that, it would be very useful to know about them.

Another announcement was made about the earnings disregard relating to the medical card. A couple of contributors have spoken about the fear of losing the medical cards. A colleague and friend of mine, Mr. John Doyle, who has unfortunately passed away, always said that when people with disabilities get jobs, their disabilities seem to be cured overnight and they lose their medical cards straight away. One of our guests mentioned this and stated that his problems were cured because he got a job, which is absolutely crazy. John Doyle, who was confined to a wheelchair, detailed the additional expenses that come with being disabled.

He spoke about the price of the cushion on his wheelchair and how much it cost to replace it. The medical card was a cushion to fall back on which sustained him when he was unemployed. That was a barrier that stopped him. He became very friendly with Senator Dolan, the DFI and some other fantastic organisations.

The Minister for Health, Deputy Harris, has made some announcements in respect of the earnings disregard. We have not seen the proposals as yet; perhaps the witnesses could share their views on them.

Ms McAnaspie spoke about entering the workforce without training or experience. I am not sure what part of the country she is from, but I have some experience of dealing with WALK, which is a fantastic organisation working in the Louth area which works with people with disabilities and employers. It helps to place people in employment and works alongside them. It is a fantastic model that could be replicated across the State quite easily. It works for both the individual and the employer. I am not sure if any of the witnesses have any experience of that organisation.

In 1995, the Barcelona Declaration was made and the Government signed up to it. The declaration set targets in many different areas, one of which was employment. It aimed for a 3% compliance quota to try to get people with disabilities into State jobs, whether with local authorities or Departments. With the recruitment embargo in place, I am not sure whether that target was achieved. However, since bodies - whether local authorities or across the board - have started hiring again, I know that people with disabilities have been completely overlooked. The State is the largest employer in the country and it could easily achieve the targets that were set. There are many brilliant people, including the witnesses, who are living with disabilities and who want to get into the workforce. The State should not only achieve those targets, it should exceed them.

Ms Ní Mhaoláin brought up a serious point. She mentioned that her supports were halved when she was in sixth year. That was a critical time in her education and she described the impact the withdrawal of her supports had. Unfortunately, we are aware of the delays that children face for accessing occupational therapy services. Ms Ní Mhaoláin touched on the critical importance of having those services in place and the interventions that have to happen at an early stage. Her comments on that certainly hit the mark and highlighted a serious issue that applies across the board. Having the appropriate level of services cut by 50% at that stage had a really detrimental impact on her.

I commend the Co-Chairman on getting the three committees together. It was a very good idea and it is something with which we should move forward. I thank the witnesses for coming before the committee to share their very personal experiences with us. It is great to see that they are all in a good place and that positivity is radiating out of them. They have all done well.

I am the disability spokesperson for Fianna Fáil and, as such, I deal with people with disabilities on a regular basis.

Fear of the loss of a medical card is the issue raised most regularly with me when I talk to persons with disabilities and their families. It reminds me of a bird whose wings are caught. People with huge potential are afraid to seek promotion at work or to get a good degree or complete a course that would lead to a good job because of the constant fear of losing a medical card. I have raised the issue with the Minister, Deputy Harris, in both the Dáil and at the health committee and he has said he is aware of the issue and will look at it. We must watch that going forward.

I note what Ms Daly said about the PA being employed by her rather than by her employer. It is a very good point. It is something employers fear in that it is not clarified. As Deputy O'Loughlin said, it would be a good idea to bring employers to the joint committee to clarify the things they are unsure about. It might be new to them also.

Can the witnesses confirm that there is no career guidance at all in special schools?

Ms Eileen Daly


Ms Eileen Daly

There never has been and there is still none.

It is shocking. I note what Mr. Kearney said about hidden disability. I come across that very often. People see it as a plus and as a minus but it is something around which greater public awareness and training are required regarding how to deal with someone who does not appear to have a disability but does. It is something I am interested in discussing further with the witnesses. How can we go forward in that regard? Mr. Alford referred to the importance of involving persons with disabilities in the selection of their key workers. I agree fully on that. If one is going to be spending so much time with someone, one must ensure that one gets on with that person. Brian is very lucky if Mr. Alford has his dinner ready some days. I hope to meet him some day as Mr. Alford obviously thinks a great deal of him, which is lovely to see. I thank the witnesses for attending.

I thank the witnesses for their presentations. I will not repeat a lot of what has been said and will, instead, ask a few particular questions which have arisen for me. Mr. Moran mentioned not being seen as a voter base and being unable to organise quickly enough to protest or respond immediately when things happen. Last week, I was surprised to hear at Viviane Rath's session in UCD on political representation that there is a stipulation that PAs cannot attend any sort of political engagement. As such, PAs cannot go to political events with the person they assist. Can someone comment on that? If someone's PA cannot accompany him or her to political events, it dilutes that person's ability to function as an active citizen, to exercise representation or to seek to vindicate his or her rights. It is an important issue and it should be examined.

I know Ms Daly from the amazing work she has done in Trinity College and from my involvement in the career service there. She spoke about the three-year work project in Trinity. Can she touch on some of the positive outcomes of that work? She stated that people's lives cannot depend on project funding. That is important. These projects cannot be short-term in nature when disability is a long-term matter for many. My own daughter is on the spectrum and went into Trinity this year where she really saw the benefits of the disability service in the college. I compare that to what people are saying around further education and the disparity between the further education sector and the universities in the context of disability services. Can Ms Daly refer in greater detail to the beneficial outcomes of her work?

Mr. Alford referred to the residential spaces he has been in and how horrible that time was for him in not being able to live independently. Can he clarify his references to workhouses? Did residential services send him to work in these places for little to no pay? How did that relationship come about and how did he end up in such employment? Was he directed there from a particular service or did it happen because he was living in a residential service setting?

The presentations have been really wonderful and lots of issues have been raised. I will try to avoid some of the ones which have already been touched on, including the important point around the role of the embargo on public service recruitment. I was struck by the issue of invisibility which Mr. Kearney spoke about. He referred to invisible disability. I was also struck by that issue in the context of what Mr. Alford said about residential institutions. He said that when he was in residential care, he was unable to participate in his community and was not given the necessary level of visibility. He has described how he now has that.

I was also struck in particular by how that is reflected in payments and the invalidity pension. I also sit on the social protection committee and I am very interested in why a person would be on that payment rather than on disability allowance, which would permit some capacity to work. It is a real worry that they are waiting for a person to become 66 when the disability will disappear. It seems that those who are working or who are not on disability allowance see their disability or needs disappear because they are no longer on that payment. It is a real concern given that there are people with disabilities who are working, who are older and who are younger. They are in all those other parts of the system. As such, the idea that a person comes into focus every now and again is a real concern. The witnesses might comment on that. I was struck by the idea that the pension penalises involvement, be it in politics or volunteerism.

Ms McAnaspie spoke about this also. One wants a system that encourages one and good points were made on work experience, transition year and career guidance. A narrative is coming across all the time that supports are in tension with work and engagement, which should not be the case. We have a constant concern around loss of supports in relation to employment versus the narrative we need around supports which assist engagement. Ms Ní Mhaoláin spoke very well about the idea of assistive supports. Does any witness want to comment on how to reframe the dialogue around supports?

I was struck also by the amount of unpaid time required to negotiate bureaucracy and the gaps that opens up in one's career path or personal progression. It is a huge amount of time. Mr. Moran and Mr. Alford referred in particular to the huge amount of time that has had to be put in on advocacy to improve our services. What Mr. Moran said about it being important that it be there at the beginning was striking. We must have representatives in all of these institutions and committees at board level so that it does not fall to individual advocates. Nonetheless, the witnesses might want to speak further to the optional protocol which is a way for individual advocates to press for improvements and demand justice from our systems. That said, it should not fall to individuals to take those cases.

I have specific points for Ms Daly. She spoke about transition points. This is what we are really trying to tackle here. The points on post-education supports were striking. These are supports post-education around a person's next step. She also mentioned further education. Something that is a real concern for us on the social protection committee is the need to ensure that people are given further education options. People in the social welfare system may not be coming straight out of secondary school and into college. How do we ensure that further education is brought in and that people in their 30s and 40s are brought back into the education system? What has been Ms Daly's experience?

Mr. Alford spoke about the importance of choice very eloquently; the choice of who one lives and works with, who supports one. The personal budget is a key part of that.

I was also struck by what he said about having a reserve of funds because he had been wrongly exploited in the past, which allowed him make long-term plans. Could people touch on the issue of how it can be difficult for persons on disability allowance to make the big leaps or the investment in a substantial change in their life? The personalised budget is a weekly payment but how can we support moments of big change and give people the capacity to plan their own futures?

I thank my Oireachtas colleagues for their strong support for and engagement with today's meeting. Several organisations - Inclusion Ireland, the Disability Federation of Ireland, Headway, DeafHear and others - were mentioned. I will make observations rather than ask questions because we have a problem today: we will not be able to take the flesh off the bones of the important questions that people ask and that need further interrogation.

Several people spoke of getting a break or being lucky. Mr. Moran said East Coast FM gave him a break, Jessica said Liadh Ní Riada gave her a break, Mr. Alford said Inclusion Ireland gave him a break. People talk about feeling lucky. It is luck not, systems. As members of the committee we are dealing with three systems which are part of our public system but they are not working for the witnesses. I was also struck that while they spoke about themselves they could not resist speaking about other people with disabilities. Mr. Moran spoke about his friend trying to get into further education. Senator Ruane has referred to that. There is a bank of supports at third level and it is an untamed world when it comes to further education. Colleagues have picked up on that today.

Two points struck me today, one of which is this new way of listening to people. In absolute nasty contrast, people with disabilities have been protesting inside the Polish Parliament since 18 April and their Government is treating them horrendously. We have things to put right in this country but people with disabilities are in here as citizens - let us see more of them in here at this and other committees. The people in Poland are looking for a decent few bob to get from week to week.

Deputy O'Loughlin said she has fought the good fight and now it is for Ireland to ratify the convention and fight the good fight. These three committees are starting to consider the gaps that exist.

The budget is coming up. What are the interlocking things that could happen between these three Departments? That needs to be addressed in the report. The report also has to validate the exercise we have carried out here and make sure it is possible for more of this to happen.

I thank all the witnesses. I had not met Ms Ní Mhaoláin and Ms McAnaspie previously and I am very pleased to have heard sterling contributions from people who talked about their day-to-day struggles.

Ms Eileen Daly

In response to Deputy Brady, we are still waiting for news on the medical card. We have not received a response to date and eagerly await that. Five years is not long enough to retain the medical card based on disability, which is a lifelong issue. As we age, it changes over time. One way to deal with that would be to have a medical card based only on the disability and its particular needs but open to the fact that people change too.

Ms Jessica Ní Mhaoláin

I will respond to the points that were raised with me and promise that I will do so really quickly. Deputy O'Loughlin asked me what I am paying out since I lost the medical card. I did a quick calculation and I am probably handing out between 10% and 15% of my monthly income, at least. That is not a cost that someone without a disability has. It is purely linked to my disability. There might be other costs that I have not factored in but those are directly related to it.

What Deputy Brady said about barriers to employment put up by the system is very true but there is also an attitudinal barrier among some employers. I am not sure whether it is the place of the State to do so but someone needs to address that. When people see a person with a cane or crutches, they presume that they might not be up to much. The attitude does exist although it is definitely waning.

I failed to mention that when my supports were halved and I was home-schooled, my parents paid for grinds. That cost was imposed on my family because of my disability and for no other reason. I did not have a special needs assistant for one of my subjects and I had to do that subject exclusively at home with two sets of two-hour grinds per week, which was quite expensive.

Deputy Murphy O'Mahony mentioned the fear of losing supports. I am not sure about the other people here but I was well aware that I would lose supports by going for and getting this job. I had reached the point in my life that I was so disheartened from constantly applying and having to put the confidence on when I knew people were not interested once they saw the cane that I did not care about losing supports. In hindsight, that was very naive because I feel it now, especially in my pocket.

Mr. Paul Alford

I want to respond to Deputy Brady. He asked me whether Brian is here today but he is not because he works for the disability services at Beechmount in Navan and for Prosper Fingal. When he is not there he works with me for the eight hours. My personal budget is great. Before I had a budget I had no choice in my support, or in the house about when I went to bed or got up. I did not socialise. Now I have a budget of my own. I chose everything in my own house.

I can now cook and I socialise in my community, where I have made lots of friends and met many neighbours since I moved in. Three years after moving out, I have a new life living on my own and getting the right support. I use the budget to provide that support, which is a very good thing. I want to see more people with disabilities move out of these services to choose their own supports and get the right place to live.

Mr. Gary Kearney

Deputy Brady asked about the 3% requirement. I have been to various disability conferences, including an MBA conference and Vivian Rath's session. The company I was employed by will make a stunning report. It will probably bring out pictures and everything else on how great it is but I merely ticked a box. That is all I was. The company did not actually do anything for the people with disabilities who worked for it. If, like me, you were invisible, it did not want to know. A lot of the semi-States and, I am sure, State bodies are just as guilty of it. They will do the picture work to show they have the 3%, but there is nothing real behind it on the ground. That is what I found in my case as did others in the same company who have lost their jobs since.

Mr. Padraic Moran

I was asked about the optional protocol. Only 650,000 people in Ireland are registered as having disabilities. As such, we do not have the numbers where we can go out and make a difference. When I was in London in 2012, four people were in Leinster House because there was a danger of the disability allowance and services being changed while we were competing over there. Bringing in the optional protocol would provide people with disabilities with a greater input into society. In my experience working in media, not only am I qualified to do it, but I must prove physically that I can do a piece to camera or record a live piece for radio. It is not a question of being qualified, the question is asked whether if one is disabled one can do it. There is a constant battle because there is still a very bad stigma.

I have been very lucky to have been able to compete in so many countries around the world through my sport because I have seen what can be achieved. Brussels is pretty good, as is most of Europe. Some places are not so good and I know that we are trying to get there. Ultimately, if we do not act on what we are discussing today, we will end up going around the houses again and again. It is very important to ensure that services are not whipped away from people like me. I have to pay €100 per month with the annual tax-saver ticket, which takes away eight hours of PA services that I could do with. It is great that we are having meetings, but we need people to act on this. We need people with disabilities to feel that they are valued as Irish citizens in society. There is no point in doing this, saying the presentations were great and noting how striking it is that certain things have been lost if none of it is acted on. Without action, we will be sitting here in ten or 15 years to do the exact same thing again.

Ms Jessica Ní Mhaoláin

Senator Dolan mentioned the fact that a lot of us had referred to luck. We all did but we should not be here on the basis simply of luck. It needs to go beyond that. I am here because I was lucky with my parents, my doctors and one or two people I met in school. That is not good enough.

Ms Eileen Daly

I confirm that. I am here because I met with very good people along the way but also because I can shout and advocate. I will not stop. Some people get sick of listening to me and it should not be like that. That is fundamentally wrong. It is a human right. Until we change our legislation and public perceptions, we will get nowhere.

We are just about to conclude proceedings because the Dáil is about to sit. I remind colleagues that officials from the three Departments will come before the committee in a couple of weeks. If there are specific or significant issues raised today or at the previous meeting which members want officials to address, I ask them to forward them to us in advance. This is not to try and catch anybody out. We will try to ensure the officials address the points raised at the meeting.

I thank our witnesses, Padraic, Eileen, Gary, Jessica, Paul and Dina, and their families, friends and work colleagues for attending today. The witnesses are well able to talk. Their presentations were very frank, honest and insightful. We are compiling a report on this issue in which we will be making recommendations to the various Departments. We are not claiming that in coming together we can address everything but we will try to address some of the specific issues raised, some of which are very obvious. We will make recommendations and the witnesses will have played a key role in this regard.

On my own behalf and on behalf of the three joint committees, I thank all of the witnesses for taking the time to attend today and for the manner in which they presented. It is much appreciated.

The joint committee adjourned at 1.55 p.m. until 12.05 p.m. on Tuesday, 12 June 2018.