Ms Jacqui Browne:

I thank all the members for the opportunity to present before the committee today. Ms Cassidy expressed the concerns and issues and highlighted the main facts for the thalidomide survivors very well. The Senator asked what the committee can ask for on our behalf. There are three key things. Despite Article 5 of the convention and measures in Irish law, which was referred to, we still do not enjoy reasonable accommodation to enjoy a life of equality and equal access in Irish society. I can give further examples to the ones which Ms Cassidy gave earlier. Access is an issue. Many disabled people do not have the right car or mobility transport and do not have the appropriate adaptations in their homes despite making applications and seeking such supports. There are also people who are still fighting for justice in terms of access to appropriate medical supports and interventions but geographic issues get in the way. I will give a practical example which is not unique. Take someone who has a medical card. We were meant to have the medical card since 1975. It was given to all thalidomide survivors irrespective of means on an ex-gratia basis, that is, not on a statutory basis. The problem is twofold. First, some thalidomide survivors are still working. Most of us are not. Those who are not working tend to hold onto the medical card but those who are working and are in receipt of an income beyond the means are being denied their full medical card. Even if you have the medical card, it can be difficult to get supports. For example, I live in Kerry. Some of the specialist supports that I need simply are not available in Kerry. I fully appreciate that. With respect, bringing the specialist units to Kerry will not work in some scenarios because the equipment and everything else is in Dublin so sometimes we do have to go to the centres of excellence, where they exist. Getting the team to travel around the country is not a quick-fix solution. If it was that simple we would have done it a long time ago.

The problem is the medical card. For example, I had a very long fight, a ten year fight, with all my dental and oral issues, having that accepted. Obviously, I went for treatment over the ten years to the Dublin Dental Hospital and paid out of my own pocket but I fought tooth and nail for a reimbursement of that. However, it was a long fight and no one else was going to do the fight for me. Why should it be up to people like me? I am fortunate; I do have the capacity and am like a dog with a bone. I will follow things up and follow the procedures but that should not have to be the case. I am using myself as an example because it is my example and I can use it. I know there are other instances of this geographic issue around accessing supports outside of one's county or health authority area or whatever other language they are going to put on the regions. We currently have community healthcare organisation, CHO, areas, there is talk of local community care areas. The language changes but does the service change? To highlight that need for access would be great. The committee could call out inequity of access and highlight the need for a genuinely full medical card and access and the problem of the inequity around reasonable accommodation. That is a matter that is particularly crucial for thalidomide survivors. Housing adaptation can be unique to everyone but especially thalidomide survivors. The supporting documentation that we sent to the committee gives a perfect example where a professional expert was in someone's house and trying to enforce on them their opinion of what they thought the survivor wanted when the survivor did not want that at all. We need to be listened to and respected. It goes back to what Ms Cassidy said of the person-centred approach. There are specialist supports available in other countries, such as Germany. We need to have access where appropriate to either bring in external supports or that we can go for European supports ourselves too. Those are the key things that I would highlight. To enjoy equality sometimes we have to be treated differently. That is a reasonable accommodation measure under Article 5.3 of the convention.