Ms Kerry Lawless:

I am here as a self-advocate. I also have Lyme disease. It was Lyme disease that upturned my life in 2007. By 2009, I had been forced to take redundancy on medical grounds. At that time, I was the research manager in the National Adult Literacy Agency, NALA, a position which was equivalent to that of assistant principal officer.

I was earning €70,000 at the time and managing a budget of over €500,000 with 14 staff. It had taken me approximately 20 years to work up to that position. I was an early school leaver because I have dyslexia and a number of other disabilities on the spectrum that I was born with, as well as a couple of other quirks that were diagnosed later in life, so physical disabilities as well. However, Lyme disease came along and sort of knocked me on my ass, as Anthony described. Any of the genetic quirks or disabilities I was born with, I coped with, even being an early school leaver and growing up in poverty as the daughter of a lone parent, as well as the other things a lot of us around the table went through as children growing up in the 1960s and 1970s. Things that are diagnosed more readily now, as imperfect as it is, were not caught in the 1960s and 1970s, certainly not if you were a girl. It is hard enough to get them caught now.

I coped, however. I had strategies. I did things that I now know were masking. I did things that made me better at stuff than other people. I also burnt out. It took me a while to learn that. I got by, however. I came from the type of family that just got on with things. I just got on with things and I drove. I came from a family who were politically active. You looked for solutions all the time and sought to make things better. That included the world around you and it included your life. So what if you left school at 16 because you had dyslexia and nobody noticed that you were bright and that you did not do well in exams because you did not like school? I found ways around it and got on with other things. I got involved in my community and with politics. I found a roundabout way and eventually went back to school. I ended up doing a master's degree and getting a first, because mature students rock. I got a master's without having a primary degree because I found the loophole and got in. I was one of those annoying people who sit at the front of the class and annoy all the other students.

I did that, but I burnt myself out and these small physical issues came up, which is what happens to people who are on the spectrum and have chronic migraine and these other health issues. When something like Lyme disease comes along, you are already stretched thin. It comes along - that small little tick bite - and knocks you on your ass and nobody knows what it is. I got tested here - I have an exceptional GP - and the test came back negative, like nearly 50% of the tests here do. They sent me to Beaumont Hospital and they thought I had HIV-AIDS because nothing else would account for how sick I was and why nothing was going to get me better. This went on for two years and they could not work out what it was. I kept turning up and going into work because that is what I am; I am stubborn. You drag yourself into work and no one can explain why you are so ill. You get this series of diagnoses and conditions and on you go.

Eventually, I had to give up the really good job I worked for 20 years to get and found myself on social welfare. Now, I had been on social welfare before - my mother raised me on social welfare and by cleaning houses - and that was fine; I could manage it. Eventually, however, after ten years on social welfare, as other people around the table know, there are no resources and no savings and you cannot manage it. The house I bought was falling apart and there was no more money.

I wish to talk a bit about what we are talking about, that is, this idea of intersectionality when people have a number of quite complex disabilities and a number of long-term chronic illnesses and are not going to get better. They are going to work really hard to try to get some sort of remission and to keep themselves as well as they can but they are only getting older. In the case of a person who identifies as female, she will go through menopause and that is going to knock her for six as well. That will make it harder to stay well and keep her health up.

These people have been on social welfare quite a long time now. We know, from research in a report from 2020 that disabled people have €8,000 to €13,000 worth of additional expenses every year, year on year, than does the average person. It costs us €8,000 to €13,000 each year, year on year, to live.

As other speakers have said today, the medical card does not cover all of one's medication, even if it is prescribed. The medical card and one's PRSI contributions also do not cover the full costs of one's glasses, even if they are prescribed. The medical card does not cover orthopaedics even if you are referred by a rheumatologist and even if you have a medical card and qualify for orthopaedics and every sort of community support. As for the idea of social capital. I came from a political background. I worked in community development and have worked for SIPTU, the National Women's Council and the National Adult Literacy Agency, NALA, at various stages and therefore, I know my way around the different services. I know how to fill in the forms, even though I am dyslexic. I know how to apply to the different funding bodies. I knew how to qualify for every piece of funding at every different agency. It still is not enough because your medical card does not cover all the expenses. People do not qualify for this or for that. In every story people are telling members about, the gaps grow and their income is not enough, just as other people have said.

One other thing that people around the table probably are aware of is the funding available for house repairs and adaptations that is provided through each local authority. In 2018, I needed house repairs and adaptions made. I had a report from the occupational therapist and I still had some savings left. I made an application and I got provisionally approved. I knew I was going to get the top amount, which is 95% of an award. To go forward, I needed an report from an architect, which is an upfront cost. That upfront cost is not covered and it is not something that can be claimed back. It is something that you have to fund yourself and it cannot be claimed back. People who depend on social welfare are being told that this is something they must fund themselves and that it cannot be funded back.

Some of the building costs, such as the VAT, are also not covered and people must cover that themselves. People are then told they can claim it back from Revenue but when people's income comes from social welfare, they cannot claim the VAT back because if even if they are on something like the invalidity pension rather than the disability allowance, their income is not high enough to be in the taxation system. Consequently, you must fund that VAT cost yourself.

Obviously, the amount that is available within the repairs and the adaptation is capped.

I had gone through this process. I paid for a technician's drawing rather than one from an architect because that was all I could afford at the time. I got the initial approval. I had done this, but between the additional costs, the VAT not being covered and the builders' quotes coming in much higher, I could not afford to go ahead. I was asked to talk about question No. 3, how we can ensure equal access and human dignity in public services. There we have a source of funding and grants. In 2018, on paper, did I have equal access to that grant? I could apply for it like anyone else. I was disabled and had access to the occupational therapist through community services. I got my occupational therapist report and was initially been told I qualified for 95% of the award, but I could not afford to go any further and there was no recognition and no provision. Because of my income and status as a disabled person, I did not have equal access to that because there was a presumption it was a level playing field. I will be two more minutes.