John Dolan (Independent) | Oireachtas source

I welcome the Minister of State. I thank Senator Leyden for ensuring that the matter is being discussed at this stage. I will not parse and analyse every turn in the road that has led us here. Last Thursday at a special meeting of the Joint Committee on Health, we had an opportunity to turn a corner and move away from the hurt, concerns and heat that naturally come into the issues such as this. A plethora of explanations were provided to the committee by the IWA, both in written form prior to the three and a half hour meeting and in the oral evidence its representatives gave. This afternoon, the Minister of State has been given a flavour of the engagement that took place at the committee.

Now is the time to see whether we can solve this problem. When it is all over, we can analyse who did what and what should not have been done. Primarily, this is about people with disabilities. Of course, some people will be happy to be in Cuisle or elsewhere. Let us get to the core of the issue. What is unique about Cuisle? There are a couple of things we must consider or acknowledge. I am probably better placed than any other Senator to comment on this matter with some authority. No other facility in the State provides the service available at Cuisle. I do a lot of travelling across Europe with European disability groups in which I am involved and I have never heard of a facility like it elsewhere in Europe. All the better if there is. What is unique about it? It provides a sense of home-from-home comfort that those who use it, particularly those with certain progressive and quite nasty conditions, crave. They are dealing with conditions that creep up on them and may affect how they look, speak and feel, as well as how people look at them. These are critical issues in their day-to-day lives. They can get out of their home and go to a place where they have the joy and comfort of other people with their condition or one like it. They can have a break and enjoy the comfort of knowing that the family members who support them around the clock are also having a break. That is only available at Cuisle. A point that should not be downgraded is that it is located in a part of the country where people deeply appreciate the unique service it provides, as has been noted.

This situation is somewhat similar to that in the 1950s when we could not afford to keep certain railway lines and stations open. Within a decade, we had a very different view. One cannot just turn it off and then come back in a year or two and turn it back on. We are at a critical point.

Many people, including those involved in human resources as I once was, refer to staff skill sets. I wish to talk about the heart and soul of the staff of Cuisle and the closeness of their relationships with those who use it. They note that Terry or Maura or somebody else has returned for another visit. They know the people who use the centre and they know their stories. They are trusted. There is nothing wrong with being professional in the Bord Fáilte sense, but the staff at Cuisle go beyond that. If Cuisle goes, so will they. Make no mistake, the people who use Cuisle cannot hang around and hope it will reopen.

I first heard of the closure when I was contacted by people with disabilities on the weekend it was announced.People with disabilities are not indifferent and are really committed to what they get there, including friendships developed over many years. Organisations like Ataxia Foundation Ireland, Spina Bifida Hydrocephalus Ireland, Huntington's Disease Association of Ireland, the Irish Heart Foundation, CanTeen Ireland and others find Cuisle to be a great place for holidays and respite care as well as for holding business meetings and AGMs. They do not get the same service in hotels, although that is not to slag off any hotel in any part of the country. The chairperson of the Huntington's Disease Association of Ireland, Mr. Thomas Lillis, said that his association's members appreciate the excellent facilities but more importantly, the "culture of kindness, care and understanding" that exists. He said that Cuisle is a place where people with Huntington's disease are not discouraged by being watched or judged, as is often the case in public spaces. People living with Huntington's disease and their families feel relaxed at Cuisle, a service offering friendship, respect and genuine warmth. This compassionate skill set would be a sad loss to those in the disability community who require this service. He went on to say that Huntington's disease is a particularly challenging neurodegenerative condition with physical, cognitive and mental health aspects. It is also genetic and each person with the Huntington's disease gene has a 50% chance of passing the disease onto others. This is one of several conditions that is highly charged in a number of different ways.

I beg the Minister of State to listen carefully to the people who argue that Cuisle has unique aspects to it which could be gone in a number of months. Once gone, it will not be possible to bring them back. I am talking here about the heart and the skill set of the staff and the local community, and that particular element of the service that it provides. It is true that money is tight but what is on the line here cannot be bought. I am holding a meeting with members who attended the Oireachtas committee meeting last week in the hope of starting the second phase of this process, namely, working out how to solve this problem. We need support. As someone who worked for the Irish Wheelchair Association and who walked the site at the time, I am confident that the association will not be found wanting in terms of finding a solution. The association is stuck on the money issue but as Senator Devine said, that is the core issue.