Dr. Patricia McCarthy:

I thank members for giving me an opportunity to speak to them. I will speak about my own personal experience and present some of the findings of research I have carried out.

I was born in the late 1960s and developed juvenile rheumatoid arthritis when aged two years. I have had two knees and one hip replaced within the space of nine months, but the condition did not just damage my joints, it also damaged muscles, causes significant fatigue and has damaged my eyesight, as it does for other sufferers. At the age of seven years, in the 1970s, attending a special school was the norm. Therefore, I moved from Cork to Dublin to board. That is where I received my primary and secondary education. I sat the intermediate and leaving certificate examinatins, but ambition was not encouraged and my hopes of attending college were quashed by many within the system. Fast forward 30 years and I have obtained first class honours degrees at undergraduate level and postgraduate level. In 2014 I graduated with my PhD from Trinity College Dublin. Although my ability had not changed in the 30 or 40 years about which I have spoken, the system had developed in which I could access third level opportunities with adequate supports and accommodation to enable me to work and study within a flexible system. This proves that when such systems are in place, with many others with a disability, I can achieve at the highest level of academia. As a result, I have been able to do some part-time work within academia and believe I can contribute significantly in many areas.

There are many reasons young people with disabilities are not progressing through education at the same rate as their able-bodied peers. One is the lack of consistency in individual education plans. This is provided for in the Education for Persons with Special Educational Needs Act 2004, but the provisions have not yet been fully implemented, 14 years after the Act was brought forward. As a result, such students cannot always obtain the supports and resources they require. The lack of individual education plans means that transition planning does not take place at an early enough stage and the ambitions of people with disabilities are not taken fully into consideration. They are still considered to be less able, even within mainstream settings, as can be seen in the subjects they take and the level at which they take them, with many more taking ordinary or foundation level subjects than higher level.

People with disabilities are increasingly attending higher education, which is wonderful, but when they try to access employment, things do not always work out for them. There are many reasons for this and I will only touch on some of them today.

Inflexibility between employment and the systems within which people with disabilities are trying to work is one of the reasons. Many are trying to work within a very rigid system in employment and cannot, therefore, work full time. They try to retain some of the supports and resources they desperately need to live independently. They are not trying to scam the system in any way but to ensure they can live independently and contribute appropriately to the economy. Many people with disabilities may only be able to take up part-time employment, but the question then arises of what level they can take up employment while retaining the necessary supports such as a medical card or rent allowance. The problem is that all of these supports have different thresholds and cut-off points; therefore, it is very hard for them to navigate through the system and know exactly what they can earn without it impacting negatively on them and without fearing that they will go over the limit and that things will start to fall apart.

The precarious nature of disability often means that while we may have an intention to work full time or part time for many years, it does not always happen and sometimes people with disabilities have to exit employment at very short notice and without being prepared for it. There is a constant fear of what will happens after that. There are very good programmes in place such as the WAM programme run by the Association for Higher Education Access and Disability to facilitate the transition of people with disabilities into employment which supports both graduates with disabilities and employers. In a programme in the school of education in Trinity College Dublin students with an intellectual disability are progressively being given the opportunity to take up employment and gain work experience in mainstream employment settings. While these programmes are valuable, they require consistency and sufficient funding to maintain them.

My own experience illustrates how things can change suddenly for people with disabilities. I suffer from significant vision impairment, but last July or August, within half an hour of getting up one morning, I completely lost my sight. It materialised that my eye had haemorrhaged, both at the front and the back. There was no apparent medical reason and, luckily, I have got a little of my sight back, but it meant attending 14 medical appointments within a two-month period. Members will understand I need the assurance of a medical card in such circumstances.

As well as my eye condition, I have had other medical issues in the past 18 months that have required significant medical therapies, including physiotherapy. All of this was unanticipated by me, as I had been going along well for a time. Without flexibility at work and being able to retain supports, what would happen for someone like me?

I have also placed myself on the medical housing priority list because my needs have changed significantly in recent times. I am on the waiting list to get a guide dog as well. If I do not get appropriate accommodation in a timely manner - I am not talking about tomorrow, as that is not possible in the current climate where homelessness is a significant issue - a time will come when I will be offered the possibility of getting a guide dog but I will have to turn that down because my current accommodation is unsuitable for a dog. It is a question of balancing all of these considerations.

I seem to be filling in forms constantly for this, that and the next thing. They are basically looking for similar information, yet I have to fill one in for each Department and section. After it is sent, I do not know whether it has been received. I then hear that it has not been. I have got good at photocopying everything that I have to send so that I retain a copy just in case someone tells me that it was never received. I tell them that it is fine and that I will send a copy by post tomorrow. As any committee member who has tried to find information in these systems knows, all of this can take a great deal of effort. Fatigue is a significant consequence of my disability and some days I am too tired to do this.

One of the questions I am regularly asked when engaging with various Departments and services is why my family is not supporting me financially. I find that offensive, given that I have lived independently on my own for more than 30 years. As 52 year olds - most of the members are probably younger, so that might not work - how often are members asked as grown adults living independently why their families are not supporting them financially? There is a mentality that someone with a disability is dependent on charity. That attitude needs to change. As such, it is great to see these committees joining together to realise that a person with a disability is trying to transition across all of these various Departments, as we are not just working in silos. The committees need to work together to ensure that someone like me and many others with disabilities get the opportunity to contribute to their fullest and to feel that their needs are being met in an appropriate manner.