Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein) | Oireachtas source

I join the Acting Chairman in welcoming each of the delegates whom I thank sincerely for their contribution. I also thank those who have journeyed with them in support and are sitting in the Visitors Gallery where I hope they are comfortable.

There is no question that the contributions of Ms Brill, Ms English and Dr. Cummings have challenged us all as members and touched us all as human beings. I commend all of the contributions but Ms Brill's will be an abiding memory for me after today. They have touched not only our hearts but will also have touched all those watching. This is an historic opportunity and should be part of the broadcasting of the work of Parliament every day. Perhaps the ability to reach out to people challenged by blindness, deafness and, in this instance, deafblindness, is something we have not achieved. A clear distinction needs to be made in order that we will recognise that there are three very different circumstances to be addressed.

I have a couple of questions and perhaps an observation or two to make. I thank Ms English for her opening remarks and commend the work of the Anne Sullivan Foundation for Deaf Blind People which deserves great credit for all it has done. It is important to acknowledge that Ms English engaged with us in preparation for the meeting, on which I commend her. It will be of concern to everyone that a dramatic rise in deafblindness is expected in the years ahead, which Ms English attributed to the ageing demographic, meaning that I should be worried, with the increased survival rate for infants with severe disabilities. Are there projections in this regard? Will Ms English confirm that deafblindness can be consequential on a number of circumstances? In some instances such as in the case of Usher syndrome, it is, as Ms Brill pointed out, congenital.

There are other triggers for the advent of deafblindness in one's lifetime. If the delegates could tell us a little more about it, it would be welcome.

The delegates have put down a clear marker on recognising deafblindness as a distinct disability. I noted their engagement with the Minister prior to the commencement of the hearing and hope we, as the elected voices of the people, will be able, as we do on so many things, to unite in a common demand that this happen. The delegates have shared with us that in 2006 the UN Convention on the Rights of Persons with Disabilities echoed this sentiment in terms of this recognition and that only last week the European Parliament accorded full recognition. I must commend our colleagues both here and in all of the member states on this achievement and hope that very shortly we will be able to herald the fact that deafblindness has been formally officially recognised as a distinct disability among our population. That would be the direct consequence of the collective work of the delegates and their presentations.

On clearly defined pathways to care, I know from dealing with people with disabilities that one of the great frustrations is the period of time from a particular stage in the development of a disability to the realisation of the support the person needs. This is a hugely difficult time during which people's abilities are impaired. The word "ability" needs to be emphasised, not just "disability". Ms Brill has highlighted the fact that she has nobody working on guiding and giving her a sense of her particular needs as each year passes. Dedicated support services for people with deafblindness should be able to deal with this issue. It is very important that there be no time lapse between identification of a need and the introduction of services and supports. We need to be able to predict in advance and such services should be immediately accessible when the need presents. We need services to coincide with the identification of need. I ask the delegates to comment on this issue and, given her professional capacity, perhaps Dr. Cummings might like to offer her views on it.

I thank the Acting Chairman for her patience with me. In her contribution Ms English spoke about collecting accurate data for the numbers of people who were deafblind and co-ordinating the services available. She needs to up her game because it is the services that are not available that we really need to provide. This is the only little difference I have with the thrust of her opening remarks. The services available are simply not adequate enough. They do not meet the current or projected needs of Ms Brill's and those like her. This is not a criticism; it is only to say that in any other address I would up the game again and move to another level of demand.

Dr. Cummings has stated it is only with recognition of deafblindness that a care pathway can be developed. This goes back to the point I made to Ms English on the identification of need and about there being no delay in accessing services when the need presents. I invite Dr. Cummings to comment on this issue.

The detail of aids and appliances submissions and assessment of need submissions was not shared in any of the three submissions. As laypeople who, blessed as we are, are not challenged by deafblindness at this stage in our lives - we do not know what the future holds for any of us - will the delegates elaborate a little on what aids and appliances are available? Are there specific aids and appliances available rather than a combination of deaf and blind aids and appliances? Will they elaborate a little and give us a clearer understanding?

I again thank the Acting Chairman. There are no questions I can put to Ms Brill after her contribution; its clarity stands on its own merits. It is the most compelling case I have heard put to us in all my years as a member of the committee and these Houses. Recognising deafblindness is the only result of today's engagement that can be even contemplated. With the Acting Chairman's indulgence and given that we work well as a cohesive health committee, I propose that we write to the Minister about our shared support for extending this recognition which we urge as a cross-party, cross-Government, cross-Opposition committee. We make the case with one voice. I have confidence that the Minister would be responsive, as he would only be expected to be. What is most necessary are the supports for the journey through life when they are needed; it should not have to take years to receive them after they are identified. It must be contemporaneous.

Will Ms Brill tell us a little about the aids and appliances she herself has? Understandably, she spoke with great love and pride about her daughter. I have four daughters. Although I do not need its services, I also have a dog. Has Ms Brill ever considered the services a guide dog might offer? It may be unique or particular to people who are challenged by blindness. Would a guide dog play a role in her particular circumstances as somebody challenged by deafblindness? If she has not, why not? Is it something that could be examined? What other areas does she believe it would be useful for the system to address immediately?