Maria Byrne (Fine Gael)
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I thank the Minister of State for coming here to discuss this very important issue. The last time that I raised this question was in 2019 and at that stage, seven children in the mid-west were awaiting permanent long-stay beds.

I am working with a family who have a daughter aged 11 who is non-verbal and bedridden, and they have carers who come to the house. The family cares for their daughter in the best way possible but, unfortunately, as the girl gets older it is getting more difficult to provide care. The parents must now use a hoist and it takes several people to lift the child. These are not ideal circumstances.

I acknowledge that the Minister of State is committed to her children because of all that she has done since taking up office. On her latest visit to Limerick she visited St. Gabriel's and, in fact, that is where she met the child. The family is very much reliant on the wider family. The family provides care 24-7 and the only time they get a break is when they get a night's respite in their house. While they love their child dearly it has come to a stage where the mother is in need of an operation on her back and the parents are physically not able to provide care any more. This is a very serious situation but it is not just this case. A business case has been made to the HSE in CHO 3 regarding the provision of long-stay beds because many children find themselves in a similar situation.

When I raised this issue in 2019 there were seven children on the waiting list and I understand that that number has increased. A solution must be found. Somebody said to the mother that she should leave her daughter at the University Hospital Limerick, UHL, as hospital staff would have to deal with her. Parents love their children so much that they do not want to do that. Instead, they want to do what is right by their child and ensure that their child gets the care and attention that is needed. Unfortunately, no beds have been provided in Limerick that I am aware of since the last time that I raised this matter. The number of children in need of such care are growing and it is an issue that needs to be addressed.

As I have mentioned, recently a case was made to the HSE and the parents had to fill out forms, complete a survey and so on. There still has been no answer and there is no light at the end of the tunnel currently for these families. The issue needs to be addressed and I have every faith that the Minister of State will do her best.I look forward to hearing what she has to say.

Anne Rabbitte (Galway East, Fianna Fail)
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I thank the Senator for raising this important issue and giving me the opportunity to provide an update on the matter. As the Senator knows, this Government is committed to empowering people with a disability to live independent lives and giving them the ability to choose the supports that most meet their needs where possible. This ensures that people with a disability can make a real, tangible difference in their lives.

Reflecting the strength of this Government's commitment in this area, significant additional funding was provided in the 2021 and 2022 budgets for disability developments, which will see the budget for specialist disability services exceeding €2.3 billion. This includes provision of more investment in residential support services and supports, which enable the HSE to increase residential capacity in a planned way; continue providing crisis residential placements; continue the decongregation programme; and provide more intensive support packages to enable those with complex needs to remain at home with their families.

The HSE is currently supporting in the region of 8,100 residential places across the country for people with a disability. Residential services make up the largest part of the disability funding dispersed by the HSE, at more than 60% of the total budget of the €2.2 billion in 2021.

For the House's information, the HSE disability services use a system called the disability support application management tool, DSMAT, which enables the community healthcare organisation, CHO, areas to record and manage requests for support to ensure that the application process is equitable and transparent. It is important to note that the DSMAT is not a chronological waiting list. Rather, it supports and informs the CHO's decision-making process around prioritisation of services within appropriate budgets. The aim is to ensure that services are allocated on the basis of greatest presenting need and associated risk factors.

Specifically relating to the mid-west, or CHO 3 area, I am advised by the HSE that there are two children on the priority waiting list for approval for business cases for residential placements, and that two children have been approved for residential placement and are awaiting placements to commence.

The HSE acknowledges that demographic challenges associated with the increase in the number of people living with a disability, the increase in age and life expectancy and the changing needs of people with a disability have all led to the need for increased residential facilities. In this regard, the HSE continues to work with agencies to explore various ways of responding to this need. To the end of November 2021, the HSE delivered 77 emergency residential placements, which is 33 places in excess of the number profiled for the year.

The national service plan, NSP, 2022 will soon be finalised. I would hope, when the HSE service plan is finalised, that those two children, who are at the top of that list, will be supported and the needs of the child and family will be met. I would like to acknowledge the wonderful work of the management team and the staff in St. Gabriel's and the local community in the development of that project.

I was working with the good Senator and other elected representatives in the mid-west and we were able to identify and source the funding to the respite piece of it. On first allocation, it was €5 million over seven years, and now we have gone to €7 million over seven years. That €7 million over seven years will come, hopefully, when the NSP is published. Perhaps that will give the family a little bit extra respite while the house is being sourced and built and while the allied support care for putting in place a residential solution is pursued.

The most important thing is the communication between the HSE and that family; the reassurance that they are one of the two. I think that is what the Senator really wants to know. While we do not talk about individual cases, having had dealings with Maurice throughout the past two years, I have no doubt that Maurice will engage with the Senator and the family to ensure there is a pathway to support this young individual and that family to meeting their residential expectations in the area.

Maria Byrne (Fine Gael)
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I thank the Minister of State, Deputy Rabbitte, for her commitment and response. I am not sure if the child is one of the two children. I am glad to hear that it is down to two because it was seven originally, the last time I tabled this question. This child I am referring to is certainly in need of a critical care bed. The family has been told that is what they have been put forward for.

Certainly, it has gone on so long at this stage that I believe that, as the Minister of State said, the family needs reassurance and they need an answer. It would be good even if they knew they will get a bed a year down the road; it is about that reassurance. The only way I can describe it is that they are very worn down.

It is not from lack of care or anything like that. They provide care 24-7 and they do absolutely everything for that child. It is just that they are not physically able anymore. I thank the Minister of State, Deputy Rabbitte, for her commitment.

Anne Rabbitte (Galway East, Fianna Fail)
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We all share the same common desire to have the best possible policies and services for people with disability. That is what Covid taught us, when we saw how the Department of Health could work with the local HSE areas that could work with the various providers. However, during all that working arrangement, families had no access to respite. That is why families are coming through that phase at this moment exhausted, tired and needing to know the pathway. They realise that they, perhaps, cannot be able to do this day in, day out, without knowing for how long. That is the concern that families have. We are very fortunate in the mid-west with St. Gabriel's, in that we have that established respite piece. However, respite is only one part of the gamut of suites that is required for people with disability.

We talk about alternative respite care and permanent respite care. We then have to talk about phased residential care, full residential care and how to support the needs of the individual - the person-centred approach - and the families. At the centre of that is good communication. It is no good not knowing if you are one of the two involved. People need to know where they are.

On the other side of it, my job for 2022 is to spend the money wisely with the HSE to ensure we build that capacity, not just in CHO 3, but in every CHO around the country. I look forward to the NSP being announced, because my will, preference and desire is to build that capacity to ensure that we leave no CHO behind and we address the whole suite of measures that families want. This Government has a commitment to funding and it is my job to ensure I see delivery for families on the ground.

I thank the Senator for her question.