Ms Kerry Lawless:

I thank the committee for having me here on Zoom. I am one of the people for whom Covid is not over yet so I appreciate the facility. I will talk about my experience of third-level education. This is a very important area for people with disabilities but it is overlooked because we presume the supports are in place. People think that everything must surely be in place at third level and postgraduate level, which I am going to talk about, to make education possible for people with disabilities, but it is not. There is a huge gap between what we say we do, what actually happens and what is possible for a person. I am conscious of the time so I will talk about three main things: how funding is set up for third level, particularly postgraduates and PhDs; how the social welfare system prevents people with disabilities going on to education and training; and, for those lucky people who do make it in to third level, the problems that come up with the fund for students with disabilities and the disability services within third level

I am only one person and I am only one person with a disability. I was in a particularly bad mood when I wrote my submission what seems like 18 months ago, so I have tempered my remarks. I encourage the committee to extend its consultation and talk to a wider range of people with disabilities who are studying at third level, particularly postgraduates, because there is a lot more to it than what I am about to say.

I will tell the committee a little about myself to set the context. I did not do particularly well in school. I had dyslexia, which was not diagnosed until I was in my 30s. That was not unusual as I went to school in the 1970s and 1980s and if we had heating, we thought we were blessed. I was born with a couple of other health issues as well. I went into the workforce, meandered along and got a little education along the way - a certificate here, half a diploma there. I managed to get an MA in my 30s because DCU allowed me to do an MA without having an undergraduate degree, but that is a story for another time. Things were going well and then, about 15 years ago, I got sick. I got very sick and I just could not get better. This mystery ailment ran right through my system and damaged my eyes, my balance, my nervous system and my hearing, and left me with lots of life-altering impairments and disabilities. I have neuroborreliosis, which is late stage or chronic Lyme disease. Even though I managed to get treatment a few years ago, it had gone through my system to such an extent that it has left me with visual impairments and everything I see is blurred. I am hard of hearing but I also have tinnitus so I cannot wear hearing aids all the time. I fall over a lot as my balance is gone. I have vertigo, migraines and chronic pain. There is a whole list of things. My immune system is suppressed so I get everything that is going around. That includes Covid, which I have gotten twice now despite being very careful. My hands swell from Lyme arthritis so I cannot read or write very well.

I am going through this list just to show that disabilities are not one thing. They can be multi-systemic. They affect different people in different ways and are not always visible. Just because you cannot see someone has a disability or an impairment does not mean it is not there. People with chronic Lyme, MS, Lupus or any similar disability have good and bad days. Members cannot see it because of my nice backdrop of San Francisco but right now I am holding onto the kitchen table to keep my balance. I will be able to do that for ten minutes and then I will sit down and participate in the rest of the meeting from more of a prone position. It is quite hard to do that in education and it is obviously very hard to do it in the workplace. I have had the benefit of some higher education and had a very good job. I was the research manager at the National Adult Literacy Agency, NALA, before I got sick and I managed 14 people. I think I have a lot to contribute but I need to go back and upskill, get a new qualification and update my academic qualifications because I need access to well-paid but flexible part-time work.

Why is that so hard? On paper, it would seem all these things are already in place. Do we not have the disability access route to education, DARE, programme, the fund for student disabilities and a range of things that are just waiting for me to pick them up and take advantage of them? We actually do not. Someone with my type of disability only has so much energy and capacity per day and I simply cannot go back to college full time. I need part-time options. As I am also on social welfare and in receipt of an invalidity pension, I need funded education opportunities. At third level, particularly postgraduate and PhD level, all the supports, including those from SUSI, the Irish Research Council and scholarships from individual universities, are provided with the expectation that the recipient studies full time, so I and people like me are automatically excluded. Why is that? Are we not studying the same thing? Do I not end up with the same qualification, even if it takes me that little bit longer? Am I not getting the same skills and knowledge? We are saying to people that full-time education at third and postgraduate level is good but part time is something else and they have to fund that themselves. They cannot access the huge amounts the Government is quite rightly investing in third-level education. The Government says it wants us to be a high-skill economy and that it wants people like me, with disabilities, back in the workforce if we are able. It says it wants us back in some capacity. It says it wants our skills, talents and passions but that is only if we can do it full-time.

At a university level, when there are scholarships available, not only are students meant to study full time at a PhD level but they also have to teach and do work to be eligible for the scholarship. That just means people with disabilities are automatically excluded. The vision statements and nice flowery words that universities, the Minister and the Department of Education use about inclusivity and equality do not mean anything if the very structures they have set up are excluding people who need to study part time. Obviously, this does not only affect people with disabilities. There are lone parents and people in rural areas in these situations as well. However, people with disabilities physically cannot do it full time. That is not the case with everyone but it is for people like me who have my type of illness and disabilities. That is the big thing. I want to go back to education but I cannot because I cannot afford the fees and the only funded options are full time.

The second issue is social welfare. As members probably know from their constituents, the main two social welfare options for people with disabilities are the disability allowance and the invalidity pension. While the disability allowance is not perfect, it has inherent flexibility. People can dabble in education or work a little bit and as long as they keep it under certain limits they can keep their payment and none of their secondary benefits, like the very precious medical card, are at risk. The invalidity pension is not set up like that. The medical criteria are the same for the disability allowance and the invalidity pension but one is means tested and the other is not. That is the only difference. However, the invalidity pension is administered in a completely different way and is a very inflexible payment. If someone on the invalidity pension wants to go back into the workforce they have to go on the partial capacity benefit, which means they risk losing at least 25%, if not 50%, of their payment. It also puts at risk things like the medical card, home help and all the supports that have probably taken them a decade to build up. For many people like me, that is too high a risk. It is just because of the misfortune that I happened to qualify for the invalidity pension and not the disability allowance. It is the same amount of money and the same medical criteria, but one group of people with a disability is trapped and one group is not. Disability allowance is far from perfect but it has advantages that the invalidity pension does not. Why is that?

Bringing in funded part-time options or more flexibility for people with a disability within the social welfare code would not require huge changes.

Yes, they would probably require additional funding, but not huge changes. We do not need committees set up. We do not need research groups. We do not need years and years to think about this. We just need to look at it and ask whether it is right and how we can change it over. Otherwise, we are talking about a snakes and ladders situation in which you manage to get in somewhere but something knocks you back and then you try to look at it from another angle and try to do something else and all your energy and time goes into doing things that should be straightforward.

Let us say you manage to get onto a third level course. You have family support, get outside charity support and find a particularly flexible university that is able to cover your fees, with no living grants or other expenses, but you get in there part time. Once in there, there is no top-up grant for people with disabilities, even though we know people with disabilities have higher living costs. A research report launched just last December set out in definitive terms the higher cost of living people with a disability face just by existing. It just costs us more. It costs us more to travel and to get around the house. We need extra supports. Then, when we go back into education or training, we need more supports again. Some of them are funded; some are not. There is a need, therefore, for some level of matching top-up grant, especially for people with more extreme disabilities.

The third and last point I wish to make is about the fund for students with disabilities. The name is a bit of a misnomer because it is not actually for the students but for the educational institutions to help them cater for the students. The money goes into Trinity, UCD or DCU - I am in Dublin so all my examples are of Dublin institutions - and then the university decides how and when that money pays for supports for the individual students with disabilities. That is all ifs, whens and maybes. Nothing is guaranteed and it is all at the discretion of the university, so the fund is not necessarily based on the student's needs but on how well the student can negotiate.

I refer to simple things. If you look at the small print for the fund for students with disabilities, you see lots of words like "may". Students may ask for presentation overheads or lecture slides to be given in advance. They may ask; they may not get them. They may ask for this accommodation or that accommodation. Again, there is no guarantee they will get it. I hear of students having to ask three times for overheads in advance, not getting them for some time and, finally, getting them on the day of the lecture. They need them to enlarge the font. They need them to make them in some way more accessible. That is a simple thing and it is not automatic.

Why are we still delivering education and training in such a way that students with disabilities must ask for accommodations? Why are we putting the onus on the individual student to ask for these accommodations and to negotiate access to them? Why is it that one student can go to the disability service in one university and get this type of assistive technology while another student in another university cannot get it? People with disabilities can be told access is not possible and told to check with the students' union or the university head. They can go back to the disability service and say it actually is possible, push a little and be difficult, and then they can get the support they need. Why is that the case? The whole way in which disability supports and services are delivered needs to be looked at. To be fair to the disability services, they are very under-resourced, understaffed and overwhelmed. Evaluation after evaluation has shown that, yet nothing is happening.

There are two sides to this. The disability services need more money and more staffing to do what they do, but also the whole system needs to be focused on the student, not what the universities need to make accommodations. The universities should be making these accommodations anyway. There should be no need for accommodations. One should not have to ask repeatedly for subtitles to be put on. It is as if no level of disability-proofing goes into this.

I think I have kept within my five minutes and said everything I wanted to say. Those are the three issues: the fact that all the funding, with the exception of one or two small cases, is full time; the way in which social welfare is set up, with no top-up grants; and the fund for students with disabilities. It is a matter of small changes just to make things better.