Wednesday, 27 November 2019
Imminent Closure of Cuisle Accessible Holiday Resort: Statements
I am grateful for the opportunity to come to the House today to outline the situation with regard to Cuisle. I reassure Members of the House that there are no cuts to respite services and a lot of misinformation in that regard will be challenged in my contribution today. I welcome this opportunity to restate the Government's commitment to supporting people with disabilities and their families. As Minister of State with responsibility for disabilities, I am personally committed to providing services and supports that meet the needs of people with disabilities and empower them to live independent lives. I am determined to ensure that people with disabilities will have greater independence in accessing the services of their choice and to enhance their ability to tailor the supports required to meet their needs and plan their lives. This is my policy and that of the Government and it is one in which I strongly believe. At the heart of this policy is the principle of access to mainstream services and community living. My priority has always been the health and well-being of people with disabilities.
I am very aware of the concerns of service users and their families about the decision by the Irish Wheelchair Association to transition its holiday service from Cuisle to designated hotels in the west. I make it clear that this decision was made by the board of the Irish Wheelchair Association last month. It was not my decision and I have absolutely no connection with it, contrary to what has been said in the media by some people.Cuisle Accessible Holiday Resort is a commercial operation run by the Irish Wheelchair Association, IWA, from which, I am informed, the HSE purchases respite breaks that are provided by way of a service arrangement. I met the CEO of the IWA and HSE representatives on Tuesday, 12 November last to obtain the necessary assurances that service users will be fully accommodated in respect of what is fundamentally the IWA’s plan for a progressive and innovative way to meet the needs of people with a disability who wish to avail of holiday respite breaks. I challenged the IWA on that particular issue and the way the staff were given one month's notice. That is for the record of the House.
I believe in people-centred services, and the Irish Wheelchair Association stressed to me that the clear choice and preference of people with a disability is increasingly more about having a variety and choice, with access to positive and non-segregated settings where existing commercial hotel provider settings implement universal design initiatives to accommodate people of all levels of abilities. I was informed by the Irish Wheelchair Association that one of the significant drivers of the move towards a new model of care approach, whereby appropriately accessible hotels will be used, was that there has been a significant fall-off in numbers applying for breaks in Cuisle.
In recent years, there have been positive changes in accessibility standards in Ireland that now present a greater range of choice and options for people with disabilities seeking a holiday or respite. Consequently, there has been a shift in best practice approaches. This shift is reflected in current HSE policy under its policy document: Time to Move on from Congregated Settings: A Strategy for Community Inclusion. This year alone, in 2019, we are moving 132 people out of congregated settings. That is based on decisions by the disabled people themselves and backed up with funding from the HSE.
In line with this, Irish Wheelchair Association has decided to transition its holiday service in the west to provide accessible hotel holidays into the future, and to move away from its holiday facility at Cuisle, County Roscommon. The IWA did advise me at the meeting a couple of weeks back that Cuisle requires major capital development in respect of fire upgrade works estimated to be in the region of €1.5 million. The IWA has indicated that this level of capital funding is not available within its current resources. This, allied to the fall-off in numbers, convinced it that its new model of care approach was the right one. "Convinced it" is the phrase I emphasise.
Notwithstanding the requirement to ensure regulatory standards are maintained, the HSE has confirmed to the IWA that this level of capital investment is not considered viable in the context of other potential alternative service options and models from which to deliver respite services. The IWA, by partnering with accessible hotels, is planning to provide a wide range of choice to people with disabilities seeking to take a supported respite holiday in the west. This new and innovative service will commence in March 2020 in conjunction with the HSE. There are no cuts to respite services.
The IWA has been operating comparable hotel holiday breaks in Kilkenny since 2018 and has received positive feedback across the board from its guests. Its guests are people with a disability. In fact, 99% of guests said that they would return. This service was also shortlisted for an Irish Healthcare Centre award in 2019. The IWA hopes that, in the coming years, its accessible hotel holiday service will expand to key destinations throughout the country.
The move to the new holiday service will mean that the Cuisle buildings will not open in 2020. The IWA acknowledges the contribution of staff at Cuisle to the respite service in the west. Where possible, the IWA will offer redeployment opportunities to staff and is engaging with local staff members and their representatives to ensure minimum impact. That is a commitment that the Irish Wheelchair Association has given.
I have been asked to attend this debate this afternoon, and I am very happy to do so, because it is the first time I have been given an opportunity to put the facts on the record of the House. There should be no doubt for anyone listening or watching today about my commitment to people with disabilities and their families. I am immensely proud to be Minister of State with responsibility for disabilities. I have been inspired by the goals and achievements of the people I have met since my appointment, and I am more determined than ever to realise the priorities agreed by the Government and to continue to make the changes that are needed in this country.
It is very important in this debate that we listen to the voices of the people with disabilities and what they are saying. It is essential that we respect their voices, and I, as Minister of State, will reflect their voices in this debate. I will give the House three quotes from guests and given to me by the Irish Wheelchair Association: "staff excellent, food excellent, feel equal going on holidays with everyone else"; "I no longer feel like people with disabilities are put in a box"; and "It is excellent. You give us a great holiday, not just respite." I say to colleagues not to politicise this and do not try to use it to score political points. Do not go on radio stations misrepresenting the facts. There are no cuts to the respite services in Irish wheelchair services. There is a change of model that the IWA board itself has made. It told me at its meeting two weeks ago that it did it because it had the support of its own members. I hope to be able to answer further questions later on in this debate.
I proposed on the Order of Business this morning that the Minister of State be invited in today to outline the Government's policy on the closure of Cuisle on this black Friday, with the loss of 45 staff, with facilities second to none for the thousands of wheelchair-bound and other active people who have facilitated and enjoyed their holidays. The Minister of State is certainly not giving any hope here today and is not even speaking on behalf of the people who use the service. The Irish Wheelchair Association did not consult the members and did not call a special AGM. It decided on its own grounds to close this facility. It announced it in early November and it is closing on Friday with the loss of 45 jobs and a facility that has been open for 22 years on the grounds of the Divine Word Missionaries in Donamon in Roscommon.
We had a special meeting last Thursday of the Oireachtas Committee on Health, which unanimously agreed, with all Oireachtas Members in attendance, to request the Irish Wheelchair Association to defer the decision until there was further consultation with the people the association purports to represent. There is a call for an EGM, which may be resisted by the Irish Wheelchair Association, but that is not democracy. Quite frankly, I believe the IWA is misleading the Minister of State, who has responsibility for disabilities and who is providing, through the Department and the HSE under a section 39 grant, up to €40 million a year to the Irish Wheelchair Association. Yet in turn, it announces this decision, which the Minister of State says was without consultation with him or without his approval. I find it outstandingly strange that the Minister of State would just go along with this, wash his hands of it like Pontius Pilate, and say that the Irish Wheelchair Association made the decision.
The IWA made the decision, I want to emphasise again, without consultation with its own membership throughout Ireland. If the association is so courageous now, let it have an EGM to get the views, and if the EGM decides on a certain strategy, that will be a matter for the paid-up members of the Irish Wheelchair Association, not for the executive of that organisation that did not consult. I can read out numerous representations. One of the most impressive was from a lady called Erica Boucher, who gave a speech at a meeting in The Square in Roscommon attended by between 1,500 and 2,000 people. She is very upset, as are her friends and family, that this decision has been made. There has been no consultation.The Minister of State should consult the people he represents in the disability sector because there has been no consultation.
We are asking for a delay to allow a re-evaluation of the facilities in Cuisle and to provide an opportunity to discuss with other interested parties their continued support for that facility in conjunction with the Irish Wheelchair Association. The Divine World Missionaries are prepared to extend the lease from 2026 for a period that is agreed with all parties concerned. It could be a very long extension. Any investment in the building may be for 20 years at least. The Minister of State visited the facility with my colleague, Deputy Eugene Murphy, some months ago. He praised the building and said it was a beautiful place. Although he was so impressed, he is not standing by Cuisle or the people he represents. He will not consult the membership of the IWA.
The Save Cuisle representatives who organised the rally last Saturday wish to meet the board of the IWA to discuss the issue. I suggest to the Minister of State that they meet as they are an interested party in this regard. I cannot see why they would not be agreeable to meet members of the board or the chief executive and the representatives of Oran, Dunamon, Kilbegnit, Castlecoote, Fuerty and Athleague who are so upset. This facility has been broadened out to host christenings, weddings and after-funeral events. That is all being provided in this special holiday centre. Some 45 special fishing stands have been erected at enormous cost. Up to €2 million has been invested since 1997. Seamus Thompson, the then chief executive of the IWA, initiated that programme which has proved so successful. It is so sad for the people affected by this, particularly the users and workers who provide 24-hour service in Cuisle.
I am delighted that the Minister of State came to the House, but I am not very happy with his speech. He should request the IWA to reconsider its decision and direct it not to close the facility in March 2020. The closure should be delayed for a period to allow for proper democratic consultation with the users of the Irish Wheelchair Association. The IWA should call an EGM and then make an assessment. The chief executive and board are afraid of their members. It is a very poor day when an organisation that purports to represent its members does not consult them in any way, good, bad or indifferent.
Irrespective of what the Minister of State thinks, this fight is not over yet. This will be a general election issue in the Roscommon-Galway constituency. For those who do not support it, I do not recommend that they face the electorate.
I welcome the Minister of State back to the Chamber this afternoon. I concur with everything Senator Leyden has said and I compliment him on proposing during the Order of Business this morning that the Minister of State attend the House to discuss the issue.
I will not be repetitive. I live in the Cavan-Monaghan constituency. Many people from that part of the world use the Cuisle facility. I have been astonished by the number of phone calls I have received on this issue. They all spoke kindly and lovingly of the facility and the staff who work there. I have never come across such sentiment and emotion attached to a building and the people who work in it in my years in politics.
I know the Minister of State is a fair-minded man. Further to Senator Leyden's contribution, he might convene a meeting of all the stakeholders in order to get a feel for what people are looking for. None of the people I have spoken to wants this facility closed. They feel totally relaxed and at home when they go there. They spoke glowingly of the staff who work there. Not one person is happy with the alternative proposed by the IWA. While going to an alternative location might work well for some people, all of the people I have spoken to in my neck of the woods are bitterly disappointed and will fight tooth and nail to ensure this facility stays open. I ask the Minister of State to use his good offices to convene a meeting of all the stakeholders to try to find a sensible resolution to the issue. Perhaps a stay of execution of six months might be made to allow all the stakeholders concerned the space and time they need to work out an alternative to closing the facility.
I welcome the Minister of State to the House. I am very glad we have the opportunity to discuss this important matter today. I am not among those who has sought to score any political points or misrepresent the facts of this situation in any way, or indeed say anything to detract from the Minister of State's reputation as somebody who is deeply concerned about the services for persons with disability.
Having said that, I am deeply disappointed by what the Minister of State said and I call on him to change his position. I followed the earlier part of the debate on the monitor. I listened very carefully to what he had to say. What I heard were the speaking points of the IWA. It was an apologia pro vita suain terms of his approach to this in that he has not been guaranteeing what has not been questioned, namely, the availability of respite services. However, that is not what this issue is about.
I was involved in questioning the IWA representatives at the Joint Committee on Health last Thursday. I spoke at Saturday's march in Roscommon which was very well attended. Sometimes the word "choice" is misused and it can mask very wrong choices. I was not used to finding myself towards the front of a crowd with banners proclaiming, "Our Life, Our Choice". However, this is what is at stake. We are talking about some of the most vulnerable persons in our society who, along with their families, have a clear desire to continue to use this cherished resource.
The Minister of State has told us today - I have no reason to doubt him - that he had a meeting with representatives of the IWA and heard about its logic and its decision to transition to holiday services. While we heard all the language of moving away from congregated settings, things being progressive and innovative and references to the IWA having consulted its members, which was what they wanted, nothing in his speech suggested that he interrogated any of those claims.
Nothing in his speech suggested that he has been listening to the shock and disquiet of so many people, principally the service users and their families. There was nothing in his speech to give any comfort to those people. At Thursday's committee meeting, I called for a stay of execution on this decision.
I am always suspicious when I hear people mounting up the arguments for what they have already decided. We were told first that a capital investment of €1.1 million or more was required. The Minister of State told us that the HSE does not believe this capital investment is a good idea. In the same breath we were being told about moving to hotel facilities and positive and innovative approaches. When I put it to the IWA representatives last Thursday that this was implying there was something less than positive and innovative about Cuisle, they quickly pulled in their horns and were at pains to say they would like people to have whatever they want and for both choices to be available. If that is the case, let us not be talking up hotel facilities, which are a legitimate choice. However, let us not imply that Cuisle is at some disadvantage. It is a service that when one challenges IWA representatives, they dare not criticise.
Late in the day, we were told about possible further investment necessary because of asbestos fears. We are now being told about the decline in numbers. What seems to be happening here is that the service is being run down. The IWA seems to see this as a way of saving €100,000 a year because this is what it is costing it to keep this service going at a time when it is losing money.
We have called for a pause on this and the Minister of State has not addressed that. His speech does not reflect new facts that have become available in recent weeks. One principal new fact is that there is significant disquiet about this decision. Are the people who are upset about this decision wrong, misguided or misinformed?Are they wrong to prefer Cuisle to a hotel setting? Have they a legitimate argument about the choice that they want to make? If we are serious about putting people with disabilities to the forefront then we have to listen to them.
I have the greatest respect for the credentials of the Minister of State. He has them and deserves them but he needs to take action because something has happened under his watch that should not have happened. By that I mean the IWA has taken a decision that is deeply unpopular with its service users. For all of the good work done by the Minister of State this matter will be a blot on his political discussion if he does not say stop at this point and create breathing room that allows us to see what can be done to save Cuisle. Saving Cuisle is the only thing that people are interested in. It is no good the Minister of State coming in here, with the best will in the world, and saying that he will protect respite services. That is not what this debate is about here today. Cuisle needs a chance to survive. I am not an unrealistic person but when one thinks of all of the money the Government has spent on spindoctors, foreign travel and the Lord knows what then spending €1.1 million to put a building in order is a paltry sum of money. Even if the HSE is unwilling to come up with the funding it is within the power of the Government to say something should be done in this particular case. I have no problem with the Government saying we need the community to play ball with us or we need the private sector involved. If the Government would say it will put up half of this money, as an exceptional grant, to save this facility provided the money also came from the community then the proposal would show a real belief in the community and service users. Anything else would patronise them and say: "You might want it now but you will be happy later when you are in the hotels that you did not want to be in in some cases." I am not knocking the hotel facility or the general policy of moving away from congregated settings in healthcare.
Cuisle is a well loved place and a much valued facility that is in demand. The Government owes it to the service users, their families, the staff and all of those who volunteer or are paid to be involved in this vital caring service to step up to the plate in the way that the Divine Word Missionaries have done. The congregation has offered to give every single penny that it ever got in rent for the past 22 years or whatever of the lease towards a bailout plan that would get the capital works done. The offer by the congregation shows tremendous goodwill for which it deserves credit.
Today, I expected and hoped that the Minister of State would come in here and say the decision by the IWA was made in good faith but is wrong. I have met the IWA. I listened to what its representatives had to say in good faith and they made a good case. Having regard to what I now know about how the service users feel and having regard to the proceedings of the Oireachtas Joint Committee on Health, where we really exposed that people were trying to stack up a case one minute that there is a capital problem but the next minute that they are moving to better or more positive modern settings. That is spin. We know what the people want and they were out in force last Saturday. It is no shame on anybody to say that this particular decision must be revisited. I am not asking the Minister of State for a cast iron guarantee. I am asking him to say he will use his ministerial clout to ask for a stay of execution on this decision to see what can be done to save Cuisle now that we know there is huge demand for its retention from the most important people at the centre of this story. I ask the Minister of State, with sincere respect for his credentials, to recognise that something has changed here.
Senator Leyden talked about the forthcoming general election. That is true and it is a good time to extract promises. We should not have to wait until then because the retention of Cuisle is important for its own sake.
The Government has the power to make an executive decision, use its clout and say to Cuisle to stall the closure and see what can be done to save the venue. I would be really grateful, as would a lot of people, and as a Galway man who comes from a place that is very close to this setting if the Minister would agree we need a second thought on this and will see what decision we can come to then. I think the Minister of State will have a heart for what I am proposing.
My colleague, Senator Maura Hopkins, cannot be here so asked me to speak on her behalf. Some of the Senators present are closer to this issue and I have listened to them, and I briefed myself on this issue this morning. I do not think that the Minister would be too happy that the closure is happening based on everything that I have read and spoken to people about this morning.
Cuisle does not offer the hotel setting that the Irish Wheelchair Association seems to want to move towards. Cuisle does offer a gym, a bar, a spa and meeting rooms. It also offers an environment that makes wheelchair users feel normal and allows them to be around people with whom they have a lot in common.
I understand, from speaking to Senator Hopkins, that the staff are putting on a brave face in front of the users of the Cuisle facility. The situation is very sad. I can understand on one level why the Irish Wheelchair Association would talk about moving towards a different type of model of care that it thinks may work better. The association seems to have given two reasons, which are the cost of refurbishing the facility and a move to a different model of care. To me, both reasons are surmountable obstacles. I do not believe there is any real desire on the part of the Irish Wheelchair Association to keep the facility open, from what I understand. I do not think that the Minister of State really wants that either based on the information to hand. As he has said, there is no pulling of funding and there is no need to politicise this matter. I think that we are all singing from the one page and hoping that the Irish Wheelchair Association will listen, as was said by Senator Rónán Mullen. It is nice for me to be able to agree with everything that he has said.
As the Senator said, we need to listen to the people who use these facilities. These are people who find it more difficult than the rest of us to navigate the world. They get the opportunity to spend a week or however long in an environment that makes them feel better and improves their quality of life. Therefore, we should be talking to the representative of the Irish Wheelchair Association rather than the Minister of State because I can well imagine that he is in a bind on this matter. He may be unable to expressly say so but that is what I think. Pressure must be brought to bear on the Irish Wheelchair Association to do whatever is necessary, and I do not mean a stay of execution. Cuisle is a long-standing facility that could well continue and there is the means and will for that to happen. I hope that the Minister of State will use his good office to ensure that happens.
I thank Senator Noone for agreeing to share time. I shall not repeat everything that has been said.
Senator Hopkins and Feighan, among others, have spoken very passionately about the closure over the last number of weeks. Nobody is more in favour of getting rid of congregated settings for people with disabilities than I am. I am of the view that people with disabilities should live in communities and receive equal treatment. The virtue of being treated equally would mean that they would have a choice but they would not have a choice if Cuisle is closed down.
I am concerned that the IWA has known about the situation for over two years but suddenly, on 18 October, decided to close down the facility and made the announcement. I shall respond to the claim by the IWA that it cannot afford €1.1 million and there is a different model of care. When I was a child when I did something wrong I gave an excuse. However, if I gave a second excuse my father would always say to me that I gave a second excuse as I did not believe the first one. Therefore, the first excuse had no weight in the first place. By virtue of the fact that the IWA gave two excuses it means that neither of its excuses can stand up on its own, which is very weak.
Hotel accommodation does not suit everybody, which I have heard from everybody to whom I have spoken about this matter, and that is what I learned from the calls that I have received from service users and their families. This issue is not just about holidays but very necessary respite where service users are comfortable, which is really important.
I do not like having a go at the Minister of State but I always feel that disability services have been treated like low-hanging fruit. I mean that when money must be taken away, it is taken from disability services. He has said that money is not an issue and I accept his bona fides on that. Really and truly, we need to say to the IWA that the money is available, if that is what is necessary, and ask to please postpone the closure for six or 12 months to consider the issues. We need to have absolute engagement with the IWA, service users and their families because they are the people who are most affected. I urge the Minister of State to consider my suggestion as I believe that is what he would like in his own heart and it is vital for the service.
I welcome the Minister of State to the House. Nobody here doubts his passion and commitment to his portfolio.This issue was raised by several Senators as soon as they learned of it and Senator Leyden pushed for it to be discussed further today. To term it that we cannot question and ask the Minister of State without him feeling we are questioning his commitment is somewhat misguided. I do not know the story is coming from in respect of the Irish Wheelchair Association, IWA, because it made clear in its statement to me that if the funding for the necessary works had been available, the decision to close would not have been made. The lack of €1.5 million or more to keep the fire certificate and keep the building up to standard is what has led to the closure. The Minister of State emphasised that the lack of funding, allied with the fall-off in numbers, convinced, as he said, the IWA that its new model of care approach is the right one. I am not at all convinced that Cuisle provides an outdated form of respite care or holiday. I refer to the idea that modern holidays must be inclusive. Of course, there should be inclusivity for all and an intergenerational mix of people with various disabilities or other issues. As a society and as communities, we all get along together.
The hotel-centred provision that is being lauded as providing centres of excellence for those seeking respite or a holiday is for the few, not the many. Various institutions were closed from the 1980s onwards because it was deemed that we did not want institutional living. Rather, we wanted people to be independent. We are striving for people with disabilities to be able to live independently and have much to do in that regard, such as through the UN Convention on the Rights of Persons with Disabilities. There is a significant amount of work to do to make up for institutionalisation in the past. Unfortunately, in the closure of those facilities, we forgot to take account of the simple fact that we could not replicate the services they provided in the community. Many people are on waiting lists for specialist treatment, solace or other issues. The institutions to which I refer were closed on the promise of a bright new dawn which would bring wonderful facilities within the community. That ambition was to be applauded but it has not been realised. As the Minister of State is aware, A Vision for Change was published 15 years ago to address issues of mental health but 75% of it is yet to be implemented. To some extent, we are cutting off our nose to spite our face.
Reading between the lines, it seems there are certain issues within the IWA to which I am not privy. The IWA told me that if funding was available, the centre would not be closing and that if funding is made available, it will reconsider the closure. Perhaps there are nuances to that of which the Minister of State is aware.
It is telling that all the statistics relating to and quotes from the happy people who are using the hotels and respite care only show one side of the coin. A significant protest rally took place last Saturday but nobody interviewed the people who were there to protest the closure of the centre. The quotes that have been selected are biased and one-sided and do not give a true picture of what people want. Senator Leyden knows more than I do about the IWA and is demanding that an extraordinary general meeting be called such that all voices can be heard. That is probably the way to go.
I appeal to the Minister of State not to allow the centre to close on Friday. We should take a breather and see what people want. The voices of one side only are being heard. There are many people who have complex needs and are unable to go to hotels or enjoy the freedom of living in the community. They may have mobility difficulties and require a hoist or medication. The extra loving care that they need is provided by this centre. I hope the Minister of State reconsiders the closure. I understand there are plans to move to a different system of care, but we should not throw the baby out with the bathwater.
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.
I thank the Senators who spoke so passionately in today's debate. It is heartening to know that despite some of our differences, Senators share my commitment to progressing our disability services and meeting the needs of people with disabilities and their families. However, when one delves down to the core of the issue, one sees that a lot of the anger expressed today is directed at the wrong place. I did not make any decision to close Cuisle; the board of the Irish Wheelchair Association made that decision. It is an independent, section 39 organisation and as Minister of State, I cannot get involved directly in its internal affairs. However, the members of the Irish Wheelchair Association are perfectly entitled to get directly involved. If they want an EGM to be held, I have no issue with that.
I will now respond to some of the specific issues raised during the course of the debate. Cuisle is a commercial operation from which the HSE purchases respite breaks. These breaks are provided under a service agreement between the Irish Wheelchair Association and the HSE. The HSE purchases respite breaks which are provided by way of a service arrangement. While the State funds the services of up to 6,600 people annually, only 480 people attend Cuisle. The HSE will continue to purchase respite breaks from the Irish Wheelchair Association in the new hotel model of service which is expected to commence in March. The HSE made that decision with the Irish Wheelchair Association. Reference was made to economic issues and the sum of €1.5 million. When I had a meeting with representatives of the Irish Wheelchair Association, they did not ask me for €1.5 million but said this decision was agreed by the association's members and board and I accepted their word. The issue of €1.5 million came up at a meeting of the Oireachtas Joint Committee on Health. There has been a change in position, which might answer Senator Leydon's question. I would like the Senator to ask the Irish Wheelchair Association why it changed its position.
Let me finish my point please. I want to deal with this particular issue. The Irish Wheelchair Association does not own the existing facility. It has a lease agreement with the Divine Word Missionaries order which expires in 2026. It would appear that Senator Mullen and others are asking that public money be provided so that major upgrade works can be carried out on the facility at an estimated cost of €1.5 million. This building is owned by an organisation with which the HSE has no direct relationship. The HSE further understands that the sum of €1.5 million is the minimum estimate of the costs associated with the upgrade works. The potential exists for additional costs to arise due to the current condition of the building, including concerns regarding the presence of asbestos. That is an important point-----
When I spoke to representatives of the Irish Wheelchair Association, I did not wash my hands of any issue. I put a lot of the points raised in the House today to them. I met Senator Hopkins, who did great work on this issue behind the scenes, as well as other public representatives from Roscommon. I proposed a pause and raised the issue of the treatment of staff. I am very concerned about staff only getting four weeks notice. I have major issues with that. I assure Senators that we had a robust meeting. There was consultation with public representatives. Everyone seems to have missed the fact that I said in the past week that my door is wide open to the Irish Wheelchair Association, the HSE and all relevant stakeholders, if they want to ask for something which differs from what they asked for last week. Senator Gallagher mentioned stakeholders, to whom I will always listen. I have just come from a series of meetings with families of people with disabilities.
Senator Mullen has raised an important development and I have no problem in accepting his bona fides in that regard. In the interval between the meeting that I had and the meeting of the Oireachtas Joint Committee on Health, the position of the board of the Irish Wheelchair Association changed. I did not change my position and in that context, Senator Mullen should ask questions of the board. I am not going to get directly involved in the internal workings-----
I have no problem with the Senator making a point at the end but I am trying to respond to the debate as per Standing Orders. Senators Noone and Hopkins raised the issue of the pressures on staff and referred to their sadness. I understand that. I have been to Cuisle and know the people involved there. There is no anti-humanitarian view at work here.There was pressure on the IWA over the past couple of days. I accept that point. However, it has changed its position. Senator McFadden talked about the congregated settings and excuses. When I heard that I thought about how the view expressed by the IWA on 12 November had changed over the past couple of days but that is for it to answer, not me. That is what I mean by interfering. I have said that I have talked to the IWA and the HSE. My door is open to talk to the IWA again, if it has changed its view of what it needs. It never asked me for money at the meeting. The IWA is a commercial body and the HSE purchases services from it. The Minister has no role in the matter.
Senator Mullen asked why the Divine Word Missionaries will not invest in its own property if the State has no relationship with that organisation.
Senator Devine spoke about hotels and the UN Convention on the Rights of Persons with Disabilities. I mentioned 6,600 people who are getting respite services. I hope the Senators are prepared to listen to the voices of those who want to go to hotels. I hope they are.
Those people have a voice too and have to be heard. It is important to listen to the person with a disability on the issue. I mentioned only two or three cases. I know many families and others who like the hotel model. I want to deal with the misinformation given out about this in other quarters. This has been tried in Kilkenny and Galway and other places. The individual checks into the hotel which ensures that everything he or she needs is available, including fully accessible en suite rooms, specialised beds, aids and appliances, hoists, support for medication and management, clinical tasks and IWA personal assistants who are available 24-7. People are saying they like that. I am saying give them the choice and that is in line with the UNCRPD.
Senator Dolan talked about the core issue. I did not like his analogy of railway stations, with which I felt a little uncomfortable.
We also want to listen to people who have different views in the whole disability sector. That is an important part of the broader debate.
The IWA has an ethos of delivering services that respond to the needs of its members. I hope in this case that if it is not responding to the needs of its members, the Senators who have an association with it will highlight that.
The new service will be located in accessible hotels.
When I became Minister of State with responsibility for people with disabilities, I made three commitments. The first was to reform the disability services and this is part of that reform. The second was to invest in the services and the third, and most important, was to ensure that services were person-centred. I stand over my record.
The figure has increased by €490 million since 2016. The increased level of funding in 2020 will enable the health service to continue to provide a broad range of services aimed at improving the quality of life for people with disabilities. If there is a change of view in the IWA or elsewhere, my door is always open to talk to people with disabilities, the HSE and the IWA. My bottom line is that I will listen to people with disabilities and what they want, not what the Senators or the HSE want, and that is in line with the UNCRPD.
As I tabled the motion today, I am telling the Minister of State to inform the IWA to listen to its members and have an extraordinary general meeting. He should not try to suppress it. Does the Minister of State know that the IWA will not provide buses for people to go to the rally on Saturday or the rally here in Dublin? It is trying to suppress the wishes of its members in regard to Cuisle. It is a dictatorial group. The Minister of State is doing nothing. He is not standing up for its members. He is supposed to be the voice of the voiceless.