Ms Mary Farrell:

Many of the issues that Ms Bardon raised are equally relevant to people with brain injury. I am struck by the experience of a relative in the UK. This was a young woman working in the Open University who had a brain bleed, which is the same thing. I am thinking of the support she had to enable her to cope, get services and to get what she needed to enable her to gradually return to work part time. The different types of work and so on comes into play and it may be easier in some jobs and responsibilities to gradually ease in than others. I cannot help comparing her experiences with Ms Bardon's and how good it was. The outcome speaks for itself in that she went back to work, and did so full time and made a very good recovery apart from her eye.

On advocacy, Fiona is a wonderful self-advocate and advocate on behalf of any others. It is wonderful to see people who experience these problems speaking on them, as we saw on television the other night. That was great. I was so pleased to see people who were themselves brain injured able to speak out and say, "This is my experience. This is what happened to me", because although people with a mild acquired brain injury may be able to do quite a bit, they never see the bigger picture. It focused on what they would need which would be very different to what a person with a very severe brain injury would need. The whole area of advocacy is very difficult. Despite all the different things that I have done in the past 30 odd years, my primary role has been as an advocate for our son. I am thinking of the time this takes. I have a room stacked up with files and box files. I moved some to the shed. I am afraid to throw out stuff because I never know how far back I will have to go to find something that is relevant and said, "Oh yes but you have said this, and this is what was going to happen." We go back and forth all the time. You are a constant advocate. You do not know when it is or is not going to end and who will take up the mantle when you are no longer able to do that. And not everyone has family to do that. Our situation is not the same as that of everybody else. I do feel for people who are on their own, struggling for this who are not able to get any information or be provided with proper discharge summaries and information. That is the same for ABI as with strokes or any catastrophic injuries. The person and the families do not feel as though they are getting anything by right. We return to the UN convention again. You do not feel as though you are getting anything by right; you are begging. You feel as though you have the begging bowl out, looking for something and that you are really very lucky if you get it. But you are not looking for something extraordinary; you just want this person to recover the extent that they are able to live their best lives and that the family can benefit from that. If the person has a better quality of life, then so too does the family. For parents in this situation, their income and everything changes. The dynamics of the family change. Someone has to be there and take responsibility, to go to meetings, reviews and follow-ups. I have been doing this all my life. You come home from work and then you are doing the other job. You would have to leave work to go and do something related to all of this. It should be a right. These people should have this by right. It should be easier to access these services but it is not. The scattered and fragmented nature of services around the country with one organisation doing a bit here and another doing a little bit there, is another issue when you are living in the wrong area. From my experiences and from talking to people, I know there are pockets of the country where, never mind broadband, they are not able to get therapists or anything. They cannot access any services. The provision of services around the country is appalling. The further someone lives from Dublin the more difficult it gets.

That goes back to the issue of transport, which I raised earlier. That is something that the committee needs to take on board. It comes into the cost of living with a disability. Ms Bardon touched on how that impacted on her at a personal level. From our son's perspective, it is awarded on the basis that a certain income will be returned annually so all the plans are based on that. Things change over the years. The needs of the person change. You find yourself in a situation where there is no money and the person is dependent on a disability allowance. This goes back to wards of court matters, which I do not want to get into. It is very difficult when you are straddling two horses. One impacts on the other. You would not be involved in the system if you did not have the brain injury. Back and forth you go. The cost of living with a disability now is huge. As Ms Bardon has found to her cost, there are many services that even if you had a medical card or all the money in the world, you cannot buy. I cannot go out and buy the services our son needs because they are neuro-based in a hospital where they provide services, both ABI and epilepsy. You tell me where is the neuro centre? We are fortunate that we are within travelling distance at approximately an hour. There are people living in counties Kerry, Clare, Leitrim and all sorts of other places. I meet them at the hospital and they have been travelling since 6 a.m. or something to get to these services. Even then, they may not see a consultant. They may see a junior doctor or someone else. They feel that they have travelled all that journey for nothing. It is very different since Covid but in regular times, they could be waiting there for two hours. In that time they have to get food, pay for travel, pay for car parking even if they have a disability. Just going to the hospital is a costly experience. They may be attending clinics regularly where there are different types of clinics for allied services for spasticity and other matters.

A person may not just be attending one clinic; it may be a matter of attending different clinics for different things. Some things have been done online more recently, such as psychology input, which has worked well. However, some things cannot be done online and people have to be there physically, which is quite difficult at the moment.

I will give an example of the cost of living with a disability. I forget the details so I am open to correction on this, but a person with a medical card is entitled to four chiropody appointments in the year. Someone who has a deformity of the foot due to spasticity, depending on the circumstances, might need to be seen every five or six weeks. It generally works out at ten visits per year. A person cannot straddle the two services. They cannot pay the HSE person to keep going to them and they cannot switch back and forth between the public and private so they end up paying privately for all those appointments. That is just one example but there are many different things they have to pay out for and the cost of disability is not factored in. I do not know how but something has to happen for people who are long-term disabled who do not have any possibility of returning to work. Some people received a settlement expecting it to carry them through for their lifetime, but that is no longer the case. These things will have to be dealt with at some level. They will have to be managed because it is so unfair on the person and it affects the quality of life they had and expected to have. Things like holidays, a weekend away or going to a concert are all gone now because they no longer have the income for it. If someone has a carer and needs the carer to travel with them, that is a double cost every time. Going out for a meal, a coffee or whatever is a double expense. If the person is in Beaumont Hospital with their carer and they pay €5 or for a coffee and a snack, they are actually paying €10. The committee will see what I mean about it all doubling up. Sometimes people might need two people assisting them, depending on what they might be doing, so that can be a treble cost. It is very expensive. People must have their services as a right rather than feeling they are looking for something extraordinary or charity. It is only very basic stuff that they need in order to get on with their lives as best they can.