Dáil debates

Thursday, 5 May 2022

Saincheisteanna Tráthúla - Topical Issue Debate

Disability Services

6:45 pm

Photo of Pauline TullyPauline Tully (Cavan-Monaghan, Sinn Fein)
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I am contacted regularly about the lack of respite services in counties Cavan and Monaghan. Currently, respite services for both adults and children are provided in Annalee View, a respite centre in Cootehill, County Cavan. However, because adults and children cannot be facilitated together, the services are provided on alternating weeks, that is, adults one week and children the next. It is not sufficient to deal with the large number of people who require respite services throughout the two counties, so there is a need for at least two centres. Two in each county would be brilliant. I acknowledge that Steadfast House, in Carrickmacross, provides respite as well, but there is demand for its other services.

What plans are there to expand the existing level of respite in both counties? When Annalee View was closed for repair some years ago, for quite some time, for a while no respite services were offered at all. Then Killygowan respite service was opened. At full capacity it could facilitate only five people. I think during Covid that number was reduced to two. Again, it operated on an alternating basis, with children one week and adults the next. When Annalee View was reopened, why was it not designated for children, say, and the other centre, Killygowan House, kept open for adults? So many individuals are refused respite due to the increasing numbers of individuals seeking to avail of the services. Some have been informed that the service does not cater for those with mild or moderate intellectual disabilities. All individuals with intellectual disabilities should be entitled to respite care if they feel they need it.

In a reply to a recent parliamentary question it was indicated to me that there are plans to provide separate centres for children and adults in CHO 1. A submission is being made for funding to support those plans. However, the reply did not answer the question I asked, which was specifically about Cavan and Monaghan. It gave the information for just the CHO area in general. I want to know specifically what plans there are to provide additional respite services in those two counties and how far along those proposed services are.

I receive many queries about respite services from families, and they are at the end of their tether. These are families who have children sometimes with disabilities that are quite complex. They were in receipt of respite services before Covid, but that has not been resumed, or certainly not to the extent that they were receiving it prior to March 2020.

Many families need a break so that they can perhaps do some other activity with other children in the family or they just need some time for themselves. Children with complex disabilities might need a break from the family home too. Respite should be arranged in conjunction with the child to ensure that not only is the child properly and well cared for, but that he or she is interested in the activities provided in order that respite is enjoyable and the child looks forward to maybe going back and repeating it a few weeks later or whatever.

I am also contacted regularly by aged parents who may have adult children with disabilities living with them. They should be living independently but often they are on the local authority housing waiting list for houses for up to ten years and no supports are being put in. There were moves, and that is improving, but we still have a situation where there are adult children with some complex disabilities living at home with aged parents and they both need a break - the adult needs a break from the home situation and the parents need a break.

To repeat my questions, are what plans are there to expand existing services in Cavan and Monaghan and what is the timeframe for the expansion?

6:55 pm

Photo of Anne RabbitteAnne Rabbitte (Galway East, Fianna Fail)
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I thank the Deputy for raising this important issue.

As the Deputy will be aware, I am keenly aware of the critical importance of respite for loved ones and families of those with a disability and I am deeply committed to expanding the respite service, both in terms of quantity of hours and in terms of locations throughout the country.

Basically, let me explain it to Deputy Tully like this. When I did the budget in 2021, because of the cost involved my ambition was that I would provide one respite house in each community health organisation, CHO, around the country. We all know that each CHO could have multiple numbers of counties. In 2022, that went to ten houses, to 11 and to 12. I have enough funding for another respite house in each CHO again but this time I have built on it. What I have built on it this time is three complex needs ones - two for medical complex needs and one to do with Prader–Willi syndrome, which is costing €600,000.

The idea here is to put a respite house into every single county. By the time I leave Government or no longer hold ministerial office, my legacy will be that I will have built in respite houses. I believe that we need to create capacity. The capacity is needed. We understand clearly from Covid one of the issues was that parents of children and adults could not access respite and in order for us to ensure that relationships last for as long as possible, we need to give the parent the night's sleep and give them regular respite. Then, guess what? We can keep family connectivity for the better.

I met the Deputy when I visited Monaghan at the request of Deputies Niamh Smyth and Brendan Smith, and where I also met Senator Gallagher, the Minister, Deputy Humphreys, and Senator Joe O'Reilly. I was informed by the local CHO in Cavan that the disability services provide respite for adults and children in Annalee View Respite Centre, Cootehill, County Cavan, on alternative weeks. To be honest with the Deputy, I was quite shocked to hear that. I was quite shocked to hear that children and adults alternatively have only one house in the entire county to deliver respite. It is not what I would deem a fair or equitable access to services. One house in one county does not meet the needs by any manner or means. When I visited the primary care centre, one of the ladies within the HSE progressing disability services spoke to me at length about that. As I say, it is something that has to be prioritised.

Respite services for adults in Cavan-Monaghan catchment area are provided from Steadfast House, Carrickmacross, County Monaghan. The Annalee View facility had previously closed due to major repair works on-site. Following the temporary closure of Annalee View and throughout the Covid pandemic, respite continued to be provided in a new location called Killygowan Respite Centre, Cavan. Funding was allocated in 2020 to the community healthcare organisation of Cavan, Donegal, Leitrim, Monaghan and Sligo to develop respite services. The 2020 funding is required to be allocated based on assessed respite service needs across the community health area. This year Sligo and Leitrim area of the community healthcare area have been identified as the area in which respite service developments are required initially.

The question Deputy Tully has asked me is, where the house going or what is happening in CHO 1? I am telling the Deputy it is going to the Sligo-Leitrim area, not to Cavan-Monaghan. To be honest with the Deputy, the Cavan-Monaghan situation only came to light when I was with Deputy Smyth two weeks ago.

Photo of Pauline TullyPauline Tully (Cavan-Monaghan, Sinn Fein)
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The house in Cootehill actually caters for Cavan and Monaghan - it is two counties. I accept Steadfast House cater for some in Carrickmacross as well but for children in the two counties, it is Annalee View.

The day the Minister of State refers to in Carrickmacross, I was talking to some of the people in the HSE as well. I will not name the place they mentioned but they were talking about some of the settings that are now being decongregated. Is there a possibility that some of those could be now turned into centres for respite? They are not suited for long-term residential purposes for all the reasons that people are better in their community but I wonder whether that could be an option because I had a conversation with someone about that. I thought that might have been something that was on the cards. I can tell the Minister of State privately the place they mentioned as well.

I want to raise another issue that has been raised with me about whether something can be done in the case where someone, who could have been waiting for weeks or months, is offered some respite but then an emergency cases arises and the respite care is cancelled at very short notice or even in the middle of the break the person may be having. Emergencies will arise on a continuous basis. A man I spoke to told me that he and his wife had hardly any breaks at all before their daughter was given respite for two nights. They booked two nights away but on the second day, they received a telephone call telling them they would have to take their daughter out of respite because an emergency case had arisen. It was heartbreaking because they never got away for a break. Can something be done about that as well?

For adults, I hope there might be less need for respite in the long term if we have more community settings with supported independent living provided. We will always need it for children going forward. At the moment, though, unfortunately, we have to focus on both.

I thank the Minister of State for her response.

Photo of Anne RabbitteAnne Rabbitte (Galway East, Fianna Fail)
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I thank the Deputy. I will have a conversation outside of the House about what the Deputy is saying, but she is correct. The structure and the design of the houses I have come across perhaps do not address the needs, the challenging behaviour needs or the emergency cases that I would normally have come across. I saw a really good house design recently in Swords. The Talbot Group is changed with the delivery of the care there. I describe it as the house with two front doors. One front door caters for four or five children who have mild to moderate needs and the other front door caters for children with more challenging behaviours. At all stages, one part of the house will always function because we always cater to those with mild to moderate needs. Then if there is a child who needs access, whether it is an emergency case or more challenging behaviour, he or she can access the house the other way. It meets the HIQA, requirements. It can be HIQA-approved. We need to look at our designs and what we are purchasing or renovating. What the Deputy has described in relation to the decongregated setting would be a large space. Clearly, it was HIQA-approved in the past. In fact, the changes and the alternations, and perhaps the capacity to be able to cater to the two front doors, could possibly be easily remedied to ensure that we could have quicker delivery without having to go out looking to see where we could find a house. In this challenging market, if there was one there already that we have decongregated, I would be asking the CHO whether we can review that and look at it to see what costings would be involved to ensure we could create that capacity. I am aware, from the nine houses that I delivered in the 2021 budget that I put in an extra 10,000 bed-nights for children and adults, which is significant. By the time I put in place another 12 houses this year, the Deputy will be able to see the potential capacity I will have created to support families, to support the children and also the complex cases that sometimes get forgotten about.