David Cullinane (Waterford, Sinn Fein)
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I move:

That Dáil Éireann:

notes that: - respite and short break services play an essential role in supporting family carers and people with disabilities, yet three quarters of families get no respite at all;

- there is a significant level of unmet need in terms of respite care, with less than 5,200 people receiving a respite service in 2022, despite there being an estimated 20,000 people or more with intellectual disabilities, physical and sensory disabilities, and autism living with family;

- less people received respite services in 2022 than in 2018, when more than 6,300 families were in receipt of respite care; and

- fewer than one in four people with an intellectual disability, living at home with their family, received any form of Health Service Executive-funded respite service in 2017, and only a third of adults, and the overall level of service provided has decreased with only 120,000 overnight respite sessions provided in 2022, compared to 160,000 in 2019; and further notes that: - recent closures of respite services in Cork, Wexford, Donegal, and other counties have left hundreds of families with children and adults with disabilities without essential respite care, with only 15 respite beds available for children with disabilities in Cork;

- the Government failed to halt the closures of respite care centres during and since the Covid-19 pandemic, and has failed to support the sector to train, retain, and expand its workforce and develop the sector; and

- the Government has been over-reliant on agency staffing, which has driven a creeping privatisation of essential health and social care services, resulting in an unsustainable workforce with unpredictable availability; condemns the Minister for Health, Stephen Donnelly TD, and Minister for Children, Disability, Equality, Integration and Youth, Roderic O'Gorman TD, for their failure to: - respect people with disabilities, family carers, and care providers; and

- act on the Disability Capacity Review to 2032 - A Review of Social Care Demand and Capacity Requirements to 2032, to put in place a sustainable plan for the sector, despite having full knowledge of its challenges for several years; and calls on the Government to: - work with stakeholders and service providers across the sector to address their immediate workforce and facility needs;

- leverage all existing capacity in the sector to support the re-opening of closed respite centres, maintain existing capacity in the sector, and prevent further closures; and

- implement a multi-annual strategic workforce plan to expand services to address extreme levels of unmet need.

I will be sharing time with colleagues; I have five minutes.

Respite and short break services play an essential role in supporting family carers and people with disabilities and yet three quarters of families get no respite at all. There is a significant level of unmet need in terms of respite care with fewer than 5,200 people receiving a respite service in 2022 despite there being an estimated 20,000 people or more with an intellectual disability, physical and sensory disability or autism living with a family. Fewer people received respite services in 2022 than in 2018, when more than 6,300 families were in receipt of respite care. Fewer than one in four people with an intellectual disability living at home with their family received any form of HSE-funded respite service in 2017 and only a third of adults. The overall level of service provided has decreased, with only 120,000 overnight respite sessions provided in 2022 compared with 160,000 in 2019.

All of that is a disgrace when we consider that we are dealing with people with profound disabilities and their families who are not being properly supported. If that was not bad enough, in recent months and in recent years we have also seen closure of respite services. We have seen closure of services in Cork, Wexford and Donegal. Many of these closures have been raised on the floor of this House time and again and yet we have not seen those services restored. They have left hundreds of families with children and adults with disabilities without essential respite care.

It is a fact that as we sit here today, only 15 respite beds are available for children with disabilities in Cork, which is absolutely unacceptable when we consider the size of County Cork. The Government has failed to halt the closures of respite care centres during and since the Covid-19 pandemic. It has failed to properly support the sector. It has failed to train enough professionals. It has failed to retain enough professionals. It has failed to expand its workforce and develop the sector. One of the key problems and the key challenges we have in providing respite care and keeping respite services and homes open is a lack of staff. We do not have the staff because we have not had any significant increase in training places and capacity to ensure that we have the pipeline of graduates we need to provide these services. The Government is failing people with disabilities. It is failing people who care for them and their family members.

The disability capacity review was published a number of years ago. It set out in clear and concrete terms the capital infrastructure and staff that are needed, and what the needs of people with disabilities across a wide range of areas are. In our alternative budget last year, we funded a multi-annual plan; the Government has not done it. The HSE produces all of these plans without timeframes and the funding is simply not there. It is all piecemeal with a little bit here and a little bit there but the actual plan is not properly funded.

Those who are failed in all of this are children and adults with disabilities who should be getting respite care. Their families really need it. Anybody who knows anything about supporting somebody with disabilities and what families go through knows that respite care is so badly needed for those carers. When we see respite beds closed, when we see that the capacity is not there and only one third of families are actually getting respite services, behind all that are real people who are being failed.

From talking to many families of children and adults with disabilities, I know it is a real difficulty and a real challenge. They love their loved ones and their family members. They will go to the ends of the earth, as we all would, but it is very demanding and really challenging for those family members. All they ask is that the Government provide the respite services that they need.

When we hear of bed closures and a loss of services at a time when demand is increasing, I have to place the blame and responsibility for that at the door of the Government. I know that the Minister of State works hard and fights her corner in her Department. However, even she would have to accept that the level of investment that has gone into respite services is unacceptable. It is a disgrace that we do not have a resource, a timeframe and a plan to deliver the capacity review. It is also a disgrace that we have closures of services and Donegal, Cork, Wexford and elsewhere. More needs to be done and the Minister of State, Deputy Butler, is in charge. However, we need a whole-of-government approach, including the Minister for Health, to ensure the recommendations in this motion are implemented.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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Respite plays a key role in supporting family carers and providing good experience for a person with a disability. It can help prevent or at least delay full-time residential placements. It preserves the family unit and supports family stability. I was speaking to a person in my constituency who was looking for respite for a long time for his daughter, who has quite complex needs. He said they were absolutely at breaking point. His daughter did not sleep much at all. They were awake most nights of the week. They were actually in crisis mode before they were offered respite. He said it has made such a difference to their life, in that their daughter is getting regular respite every two weeks. Why wait until a family is actually in crisis mode before offering this vital support? As has been pointed out to me by many, issues like this, where supports are not provided, break marriages and cause mental distress.

Today I attended the MS Ireland pre-budget submission presentation in the audiovisual room. The Minister of State, Deputy Rabbitte, was there. They stated that 64% of caregivers are emotionally drained and 32% experience depression. Some half a million people provide care in Ireland. They do so much unpaid work. We all recognise the crucial work they do but they do not need a pat on the back and to be told how wonderful they are. They need the active supports on the ground, such as respite, which would make their job bearable and make them stronger so they are able to provide the care they need to provide for their loved one.

I have raised the issue before of my area of Cavan. Annalee View Respite Centre in Cootehill provides respite for adults and children from Cavan and Monaghan, and Steadfast House in Monaghan provides adult respite as well. When Annalee was closed another house was provided, Killygowan Respite Centre. Why was this house not kept open? I have asked this before. I have asked the HSE and it told me it was not provided with the resources to keep it open. By resources I presume it means staff. I ask for an answer on that. It would make such a difference if there was one house providing respite for children and one house providing respite for adults, instead of on a week about basis. It would increase the service to a major extent. There are numerous reasons families apply for respite and there are different types of respite that can be provided but it is important that it is given.

Kathleen Funchion (Carlow-Kilkenny, Sinn Fein)
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I commend my colleague Deputy Tully on this. As our spokesperson on disability, she has done huge work in this area. I also acknowledge that the Minister of State is here. I know she is passionate about this as well but we have to highlight when there are failings. As my colleague Deputy Cullinane has said, we have to lay that at the door of the Minister of State and of the Government.

In the short time I have, I am going to speak specifically about services for children. A lot of families get to a point where they consider residential care not because they want to, but because they get to a breaking point and do not see an alternative for them. The families I am dealing with, and we are all dealing with, are looking for such a little amount of respite to begin with. People come in looking for one overnight or one day in the space of two or three months. They are not big asks. After housing it is the number one query we deal with in our constituency offices. It can make such a vital difference to families and specifically to children to get to stay in their own home, surrounded by their family and their community. It gets to a point sometimes where families look at residential care because they are at breaking point.

In Carlow and Kilkenny, access to disability services is patchy, and that is putting it nicely. In Carlow, for example, there are 23 full-time positions and only 10.5 of those are filled. I am always amazed at how half a position can be filled. How can you have half a person? Access to respite on a regular basis can mean the difference between a person remaining in their home and not. Out of sheer exhaustion, sometimes families look at residential services.

In the time I have remaining, I would like to briefly mention July provision. The programme is an absolute godsend for parents. A recent change in eligibility criteria has put the programme under serious pressure. This was highlighted in depth at the Joint Committee on Autism. I am concerned to learn that many schools are opting out of the programme due to a range of issues. We need to try to do something, particularly on staffing. I encourage the Minister of State to make sure schools are ensuring children with the greatest level of need can access that programme. That is another vital service. Again it is for the children we are failing. We should be doing absolutely everything we can for our children so they can reach their potential.

Pearse Doherty (Donegal, Sinn Fein)
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Gabhaim buíochas le mo chomhghleacaithe a chuir síos an rún seo. There is no doubt that carers and families have been failed right across the State and failed far too often. I commend the fact that Deputy Cullinane has tabled this motion today. These parents and children often find it difficult to have their voices heard. Respite services are not a luxury. They are a necessity. As was said earlier, this is what families need in order to attend a funeral or a family wedding, or simply to have that break to be able to recharge so they can provide that vital care for their loved one in their home for the rest of the week or month. That type of respite support prevents out-of-home and full-time residential placements that would otherwise be required.

These families are being failed over and over again. In so many metrics it is very clear that the Government is failing. It is failing on assessments of need, on the delivery of services and on the issue of respite care. There is a growing unmet need right across this State when it comes to respite care. Fewer people received respite services last year compared to 2018. It is nearly 20% less. This unmet need is a failure of the Government to support carers and families.

It is happening in my constituency of Donegal. I have been in contact with a mother who has a number of children who are waiting for respite services in Drumboe Respite House in Stranorlar. She has three children who should have access to the respite service there but those three children, for three years, have not been able to get that respite service in that centre. Why? It is because it is closed now for that type of service. We had assurances from the Ministers of State two years ago that this recommencement was in hand. I was recently told that Drumboe Respite House will not be reopened for respite services until the end of the year. The seven-day respite service in Seaview House in Mountcharles is still not being delivered. I raised this issue with the Minister of State two years ago and again was told that expanding this service to seven days a week was a priority. Two years later, Seaview House is still not operating on a seven-day service. It alternates between a five-day service one week, a four-day service the other week and never on the weekends. It is not good enough. Families are being failed over and over again. This needs to come to an end.

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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I thank my colleagues, Deputies Cullinane and Tully, for bringing forward this motion and giving us the opportunity to have this discussion. The disability capacity review shows massive shortcomings. Three quarters of parents caring for an adult or child with an intellectual disability have received no respite whatsoever. Respite is not a luxury. It is not an optional extra. It is what these families need and what these parents - it is usually the parents - need just to be able to keep going and provide care for their loved one.

When talking to people who are waiting on respite, they will tell you they feel like they have been forgotten, like nobody is listening to them. So long as they are stuck at home, they cannot go out and protest. We will not see them on the streets. The Government does not care. It is not listening. It does not understand. I fully appreciate the commitment of the Minister of State to resolution in this area but it has to be matched with people. It has to be matched with a plan and it has to be matched with services that actually deliver for the parents, the guardians and the carers who are doing a massive service to the State every single day of the week. I have said this on more than one occasion. If they were to ballot for industrial action, they would not be on strike ten minutes before getting the Government's attention. They do not want to do that. They love the people they care for. It absolutely guts them to have to go into their local Deputy's office and beg for services. They do not want to have to do that.

I spoke recently to a family with a 16-year-old child. The Minister of State is aware of this case because I have flagged it with her. He suffers with anxiety. He has not had respite. He is now looking at having to go into full-time residential care for however long that is going to be. His family are absolutely exhausted. He is 16 years of age and he is in an acute hospital bed in Crumlin. He should not be there. He does not need to be there. He does not want to be there. Somebody else needs that bed. His family knows this. He needs to be in respite or in full-time care. It is not hard to join up the dots but the people stuck at the business end of this are the carers and they feel abandoned and forgotten. I ask the Minister of State to please match her words with action.

Martin Kenny (Sligo-Leitrim, Sinn Fein)
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Respite is a serious issue across the entire country. I have been engaging with the Minister of State for the past two years on the problems we have in south Leitrim with families who are trying to get respite. In fairness, she came to a meeting in Carrick-on-Shannon and met the families and all the stakeholders. A group was then put in place to build a facility in Carrick-on-Shannon. That work has been moving at a glacial pace. The group meets every month and nothing happens between then and the previous month. There is huge frustration with the time it is taking. Almost a year later, they are finally getting to a stage where they are going to appoint an architect. They have the site. It is just crazy how long everything seems to take.

There was also the possibility of an opportunity in Cloonamahon House in Sligo, where there are two purpose-built bungalows for people with disabilities with rails and full accessibility. They have been decongregated.

One of them is empty while the other has two people in it. There was an opportunity to use that but that has not been used. I still hear that the HSE plans to turn them into office space. I know I said here in the past that the person who did that should be fired. I still feel that a person who would do that, who would think that this is appropriate, should be fired. Twenty years ago, families raised money to build those buildings for their children to have services and they were put there as residential services. Now they are no longer used as residential services but they are quite appropriate to use as respite services. However, the problem seems to be that the HSE does not want to do any of this work itself. It wants to ensure that all of it is done by other agencies from the private sector. The option that was put in place is the option of respite services in Boyle in County Roscommon, which again is being provided by a private provider. We have been waiting for months because that is not up and running.

I appreciate the Minister of State's commitment and that she is doing her best but, clearly, her best is not going to be enough to move whatever the obstacles are and there are serious obstacles in the way of ensuring we get services delivered for people across the country but particularly these families in south Leitrim that are still waiting two years on. The promises we made in Carrick-on-Shannon have not been fulfilled. I appeal to the Minister of State to put the pressure on to ensure we deliver on that.

Patricia Ryan (Kildare South, Sinn Fein)
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I wish to speak on behalf of approximately 500,000 family carers who tirelessly provide indispensable at-home care across the State. These unpaid and unsung heroes save the State billions annually through the care they provide for their loved ones without receiving the support they not only need but deserve. HSE essential respite services, which are a vital lifeline for our family carers, are in crisis.

This crisis manifests itself in prolonged waiting times, stark geographical disparities in service availability and in some places, a complete absence of support services. To illustrate this, an 89-year-old woman in my constituency of Kildare South who cares for her 55-year-old disabled son struggles to receive any form of assistance or respite for her son. Imagine being 89 and trying to lift your son up when you might not have a hoist, you are not getting housing adaptation, there are no services and you are getting no respite. This is disgraceful. This crisis is compounded when you consider that respite services intended as short-term relief are being occupied by long-term residential cases. We have not even touched upon those caring under the radar who keep their caring to themselves and know they will not have any form of support.

The situation calls for significant investment to ensure a fit-for-purpose State-wide respite service that duly acknowledges and supports our carers. The Government must invest substantially in our residential care facilities to keep pace with population growth and future proof our systems for projected demand. In the Sinn Féin alternative budget last year, we pledged funding for an additional 5,500 respite hours. The Government failed to match it and it shows. Ultimately, Sinn Féin would endeavour to give family carers the support they deserve for their selfless and invaluable contributions to our society. I urge the Minister of State to help and to do something here.

Mary Butler (Waterford, Fianna Fail)
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I thank the Deputies for bringing forward this important motion on specialist community-based disability respite services providing us with a welcome opportunity to discuss the matter. The Government is not opposing this motion on the grounds that we all share a desire to see increased respite services for people with disabilities and those loved ones who care for them.

Respite - a short break - can make a significant difference to the lives of people with disabilities and their families. It can be a very positive experience for the person with a disability providing an opportunity to meet others and have new experiences. It also provides a break to those who are providing care. Respite covers a range of services and can occur in a variety of settings for various lengths of time depending on the needs of the individual service user and their family or carer.

It is important to recognise that respite is not always centre-based and can be provided in a number of ways. It can take the form of home support, after-school provision and weekend activities or family support. Last week, there were a number of reports in the media that related to families seeking respite services. I think we all recognise that there is unmet need in respect of respite and I can assure the House that this Government and the HSE are doing everything possible to increase provision and to ensure that provision is allocated on an equitable basis. I know the Minister of State, Deputy Rabbitte, has a deep understanding of the importance of respite for service users and their families. She and the Minister for Children, Equality, Disability, Integration and Youth, along with the rest of the Government, remain committed to ensure increased respite services are supported.

Significant additional resources have been provided to expand respite services in recent years. The past three years in particular has seen sustained new development funding secured. The Minister of State, Deputy Rabbitte, has worked hard to ensure that all forms of respite are expanded across all community healthcare organisation, CHO, areas and that additional accommodation is made available for centre-based residential respite. In 2023, €6.7 million in new development funding is being made available to further expand respite services. In 2023, the HSE plans to establish five additional respite services and increase one service from part time to full time opening to provide 7,872 additional nights to 278 people in a full year, provide 27 additional in-home respite packages to children and young adults in a full year and provide 265 day-only respite packages to 180 people in a full year.

We must also acknowledge the respite care grant, which is now called the carer support grant, that is made available by the Department of Social Protection and provides a grant of €1,850 to eligible individuals once a year for each person they care for. While the grant was never formally linked to the purchase of respite services and recipients are free to use the grant as they choose, it is nevertheless some support to carers.

While additional resources are welcome, we have to acknowledge that there are a number of challenges associated with the provision of respite services. One of the key challenges is that of staffing and the Minister of State, Deputy Rabbitte, will later this evening outline some of the measures being taken to address this.

It is important to acknowledge that the provision of residential respite services in particular have come under increasing pressure in the past number of years due to a range of impacting factors such as an increase in the number of children and adults who are seeking access to respite as a reflection of general population increase, increasing levels of complexity across the sector due to better and improved health care and an increase in the age of people with a disability resulting in people presenting with changing needs. A number of respite beds have been utilised for long-term residential placements due to the presenting complexity of the individual with a disability and also due to circumstances at home. The placement may be temporary until a residential service becomes available. In some instances, the provision of centre-based respite to high-support individuals with complex needs means that capacity is necessarily reduced due to health and safety and-or safeguarding. The HSE advises that while these scenarios can result in respite services being affected for a significant period of time, it is important to note that the aim is to ensure that services are not closed for respite permanently.

Regulation is important in ensuring that the services provided are safe and of a high standard and can meet the needs of individuals in the most appropriate way. HIQA regulation applying to respite centres is the same as that applying to full-time residential care. This brings with it requirements concerning capacity, reporting obligations, fire regulation etc. In the case of the latter, it is understood that in a number of existing facilities, only one wheelchair user can be accommodated at a time. So while regulation is welcome and necessary, it has to be acknowledged that it places certain obligations on service providers and can have implications for how services are managed. I also need to reference the availability of accommodation in respect of centre-based respite. Procuring appropriate housing is a challenge, however, this issue is not unique to respite services. It has implications across a range of specialist community-based disability services impacting on measures relating to decongregation, the transitioning of people aged under 65 from nursing homes and the provision of disability residential supports in the community.

While I have outlined some of the challenges associated with the provision of respite, every effort is being made to support the provision of respite on an equitable basis and to expand provision in all its forms. The Government’s commitment to specialist community-based disability services and to respite is demonstrated by the provision of ever increasing budget allocations. I want to impress upon colleagues that we are continuing our efforts to make a real, meaningful difference to the lives of people with disabilities. I again thank the Deputies for providing me with the opportunity to discuss these important issues and I look forward to their contributions.

Pádraig O'Sullivan (Cork North Central, Fianna Fail)
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I thank the Minister of State for allowing me a few minutes to speak. Of all the Ministers I have interaction with on a daily basis in Leinster House, I can say with confidence that the two Ministers of State present are among the most compassionate and understanding of their briefs. This needs to be recognised. It will not be lost on me that they do incredible work.

This day last week the chief executive of the HSE, Mr. Bernard Gloster, was apologising for the pressure being experienced in accessing respite care in Cork. We all have instances and stories of families in desperate situations with regard to access to respite. Recently a Cork-based family was offered a respite place for their child in County Meath. To be fair to the Minister of State, Deputy Rabbitte, she stated in the House last week that the HSE and service providers should use agency staff to reopen the ten closed respite beds in Cork and that money was not an issue. She very politely told them to get on with their job. Subsequent to the intervention of the Minister of State, the HSE stated no agency staff were available to do as she suggested. This was followed by apologies and excuses from various stakeholders as to why this could not be done and why respite beds could not be reinstated.

Of the approximately 20 respite beds available in Cork, only half are available and staffed fully. To make matters worse, the families of a certain cohort of 48 children attending Caroline Community Special School, which is under ETB patronage, were told unequivocally that this limited number of beds is unavailable to them, pitting special school against special school and patron against patron.

I know the Minister of State is a person who cares about these children and these families. I know she has been working steadfastly behind the scenes in recent days and that she has met the various stakeholders involved. I also understand she is going to meet the chief executive of the HSE tomorrow. With all due respect, I do not think the families want any more apologies from the HSE or excuse after excuse from service providers. They want their children to be treated with dignity and respect. They do not want to have to go on local radio or appear in newspapers to fight for services they should rightly have. I know it is not a specific issue but will the Minister of State give clarity on the progress in CHO 4 when she replies to the debate?

Martin Browne (Tipperary, Sinn Fein)
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I do not have long so I will not delay. A mother in County Tipperary is caring alone for her son who has very specific needs, including an uncommon disease involving abdominal deficiencies alongside autism spectrum disorder. In the past she has had to cancel her own appointments because she cannot find anyone suitable to look after her son. The typical response we are all used to hearing when we inquire about people in this situation is there are not sufficient respite replacements to meet demand. In this case, the response went further. I was told a significant waiting list exists for respite assessments. Not only are people delayed in getting respite services there are delays in getting respite assessments. This parent used the words "dire" and "chronic" in my office to describe how she feels and how she sees the system that is failing her. Loneliness was also a feature of that conversation.

What is making the problem worse for this lady and for the many other people in a similar situation is that home care hours are just out of reach for so many. I submitted a parliamentary question on home care hours in the CHO 3 area, which includes north Tipperary. I have not yet received a reply to that question but I have received a reply to another about CHO 5, which includes south Tipperary. There are 1,003 clients awaiting home support hours in the south east community healthcare area. People whose lives are at their most demanding are being failed.

At the same time, communities are witnessing the removal of local beds and services with the excuse that it is being done to improve care in the community. It is illogical. When St. Brigid's in Carrick-on-Suir was closed by stealth, 16 beds, comprising three palliative beds, two respite beds and 11 convalescent beds, went with it. How is that serving the community? The response to that was to farm out the respite beds to the private sector in the Government's ambition to gradually privatise essential health and social care services and send those in need to other beds outside of their communities.

The Minister of State knows we are keeping a beady eye on her plans for the community nursing unit in Cashel and the unanswered questions regarding respite beds in the Dean Maxwell community nursing unit in Roscrea, given the underhanded way that health facilities in Tipperary have been treated. There is a lack of trust there. The fact we are discussing a motion on the potential need for approximately 20,000 additional respite hours is a testament to the failure of the Minister of State. She has thrown the disability capacity review out the window.

In government, Sinn Féin would implement a multi-annual strategic workforce plan to expand services to address the extreme levels of unmet need and support the reopening of closed respite centres. While the Government is not opposing the motion, actions speak louder than words. It should stop closing these beds. The Government is continuing efforts to make a real and meaningful difference in the lives of people with disabilities by pulling all of the services out of local communities and moving them 30 km or 40 km away from families.

Sorca Clarke (Longford-Westmeath, Sinn Fein)
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I commend my colleague, Deputy Tully, on her tireless work on this issue and for those with disabilities. Family carers have been held up for a long time as a crucial pillar who save the State billions of euro annually, yet time and again they do not receive the supports they need and that they rightly deserve. For the 500,000 family carers throughout the country who give the State and those they love so much with unpaid hours of care, their asks pale into insignificance compared to the caring the input.

The carers I speak to in counties Longford and Westmeath tell me they are made to feel guilty by needing respite hours knowing they themselves are physically and mentally burning out. They tell me they feel their commitment to the care receiver is being taken advantage of by the State because despite the savings their care results in, their asks are very rarely, if ever, met a timely fashion. They tell me that interaction with the HSE and State agencies is far from a two-way street. Access to residential care has fallen since 2008, failing not only to keep up with population growth but resulting in a shortfall of between 800 and 2,300 places. We know how vital this service is in terms of the temporary break that reduces stress and prevents burnout, as well as tackles the feelings of isolation and loneliness that carers experience. It also benefits those who receive care.

I have to comment on the content of the speech of the Minister of State, Deputy Butler. She highlighted the difficulties being faced by the increased number of children and adults who seek access to respite. We have a census. They have been around for a long time. This is an abdication of responsibility and an admittance of the Government's inability to plan. Information on the level of complexity is freely available. It just needs to be acted on. It is not those who are in need of respite who are the cause of this issue. This issue was caused by successive Governments being incapable of planning. It is past time the State not only recognises the value of carers but values them with meaningful support when they need it.

Matt Carthy (Cavan-Monaghan, Sinn Fein)
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I have raised the issue of respite services for children in counties Cavan and Monaghan on several occasions. It is the most frustrating issue I have to deal with. My frustration is nothing compared to that of the families affected by the systemic failure to provide their children with the respite services they need. On 15 February, I had a debate with the Minister of State with responsibility for disabilities. In that debate I highlighted the fact there were no respite services for children in County Monaghan and that services in Cavan were extremely limited and operate only every second week. They are oversubscribed and the admission policy discriminates against children in my constituency who could not get the respite care they would if they lived elsewhere.

I raised the case of one family whose son has complicated disabilities and profound behavioural and other issues. The family is going through an horrendous time. The child's father has been hospitalised since last year and will need long-term care. The mother is trying to hold all of these strings together. If she unravels, the whole family will unravel. The family desperately needs respite care.

I thank the Minister of State, Deputy Rabbitte, for her proactive engagement with me on this case but the child still has not received the respite care that he needs. The statement of purpose has been changed in Cavan but this child has still not been offered respite care. Efforts to secure a place in County Louth have not materialised. The family is now trying to source a service in County Kildare. They live at the top end of north County Monaghan. The very fact the family is contemplating this just shows the desperation involved. It is not good enough. It is a shameful indictment of our services for children with disabilities and every Government that has allowed it to get to this point.

This child's father will be released from hospital on 16 June needing full-time care. I cannot, and I hope the Minister of State will not, tolerate a situation where this mother is expected to care for two people on a full-time basis with no support at all from the people who are paid to help her.

I commend Deputy Tully on tabling the motion but I demand, as we all do, that it is actually acted upon for this family, and all families with children with disabilities, who deserve much better than they are currently receiving from the HSE and the Government.

Seán Crowe (Dublin South West, Sinn Fein)
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We all have cases we could outline to the Ministers of State. The reality is that many families feel burnt out. It was timely that there was a pre-budget submission today from the Multiple Sclerosis Society of Ireland. Its submission stated it was looking for an increase in the annual statutory investment in a centre for people with MS, and right across the board. There is common agreement that we are not doing enough. The question we need to ask is: why we are not doing enough? What is causing the blockages? We have an opportunity coming up with the next budget, but families are saying they are burnt out. A survey referenced in the MS Ireland submission indicates 64% are emotionally drained, 32% experienced depression and 22% have lost a job due to caregiving responsibilities. That is not acceptable in the Ireland we live in. We need to do more.

What can we do? People say to me that, for them, respite is lifesaving and life-changing. If we really believe that is the case, why are we not doing more? If it is a case of needing support, there is support right across this House for the roll-out of services. Why are we not doing enough?

I recall when the closure of the Cuisle centre in County Roscommon came about. Many centres such as that have closed over the years. Again, there was cross-party support for it but the closure went ahead. It is now a centre for refugees. We need to do more for these families. It is not acceptable for the Minister of State to talk of the challenges we are facing. We want to hear what we are actually going to do. We need to start delivering for these families.

The State is estimated to have saved €20 billion on an annual basis due to the 500,000 family carers who provide unpaid care each day to those living with disability or illness. We need to do more.

Seán Ó Fearghaíl (Kildare South, Ceann Comhairle)
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I am always reluctant to become involved in political debate. Deputies can say what they like politically, but an accusation was levelled at a Minister of State - I do not know which of them - of being deceitful. It is not in order, and is contrary to Salient Ruling 416, to accuse anybody or any Member of being dishonest, deceitful or underhanded. Insofar as the two Ministers of State who are present are concerned, I can state with some emphasis that they are totally transparent in how they do their business. Indeed, if other Ministers were half as transparent as they are, we would have less to worry about. The claim that was made is not in order.

Seán Sherlock (Cork East, Labour)
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I very much want to be associated with the Ceann Comhairle's words in respect of the two Ministers of State. We will hold them to account but we always seek to be respectful in doing so.

I will go back to the Labour Party motion tabled last week, when we specifically raised the issue of assessments of need. I acknowledge the fact the Minister of State, Deputy Rabbitte, gave a commitment in respect of assessments of need when she stated:

If that is not done by 1 August, I will take to budget what the Labour Party has suggested today, that we will fund the families. I am giving the time to the HSE to act on the ask and I am supported by the senior Minister in that.

I again put that on the record and acknowledge that fact.

I raise the issue of Julie Anne Cunneen and her son, Liam, specifically in regard to Carrigaline. Will the Minister of State, Deputy Rabbitte, speak to the Carrigaline case? Last week, she said she had been in touch with the HSE, that she had listened to the "This Week' programme, and had subsequently engaged with the HSE. I do not want to misquote her, but I sense her surprise at the fact there were ten unused respite beds in CHO 4. I will return to that matter because my understanding was, specifically in respect of Carrigaline, that a certain number of those beds might be allocated specifically to those children who are under the patronage of the education and training board, ETB, and not under a disability service provider. Has any progress been made on that, not just for the Cunneen family but all the families of that school? That is the second point I hope the Minister of State will come back to us on.

I have no doubt there is no shortage of money in respect of seeking to make respite beds available for anybody who wishes to have them. I acknowledge that the Minister of State referenced €6.7 million of new development funding that is being made available to further expand respite services. Both Ministers of State, between last week's Labour Party motion and this week's Sinn Féin motion, have acknowledged the fact that moneys are being made available to provide up to 7,800 - I think that was the approximate figure - additional nights. How does the Minister of State, Deputy Rabbitte, propose to bring those beds into operation? She made reference last week, specifically in respect of CHO 4, to the fact that:

I have suggested that CHO 4 needs to immediately stand up agency nursing to staff the ten beds until such time as the providers are allowed the funding to stand up those beds. Whatever rate needs to be paid, those nurses need to be stood up at that rate in order that no family is left in the situations presented here today. The lead agency stated to me that it needed 74 staff immediately. The HSE knows the ask and needs to deliver on that.

If I am extrapolating from CHO 4, which is one area, can we take it that the same pattern or model will be employed as regards the capital budget, or the budget of €6.7 million announced for 2023, whereby the HSE will be able to seek agency staff to ensure that the demand for those approximately 7,800 beds will be delivered?

I reiterate the call. To be fair, the Minister of State was very frank, honest and open with the Labour Party in her response last week. That is a rare thing in this House. I have stood on the Minister of State's side of the House and have had to deliver speeches and the company line. Again, and I say this respectfully, we will continue to hold the Minister of State to account for her words and hope that she will succeed in bringing into operation those respite beds that are so badly needed because of the number of cases we all have where we are dealing with families. We just want to see the services delivered for those people who so deserve them.

Brendan Howlin (Wexford, Labour)
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I thank Sinn Féin for tabling this really important motion on this really important issue that unites this House. There is no division across the House regarding the need.

We need, however, to reflect on exactly what we are talking about. We have a very unusual health system in this country. It grew up through voluntary provision, often by religious orders. The State has been struggling for the past 50 years to build parts and bolt on bits, but we do not have a unified, comprehensive health system, which is available on the same basis for every citizen in every part of the country. It is time we did. There is an ad hoc-ery to health service delivery. We are spending countless billions of euro on it now, but we are not in full control either of the outcomes or the agents that are delivering those services. It is something I have been acutely aware of for a very long time.

In describing the issue, I am not saying that it is in any way easy to resolve. It is profoundly difficult but the issue of carers is something that we all understand acutely. In the model of supports that we provide in this country, families want to do best by the people they love and they need to have the full support of the State to do that. A range of facilities has been devised over time to do that and one of the most critical is providing families with respite. They need certainty about it and they need to be able to plan it. In industrial relations we talk now about the right to switch off but carers have no right to switch off, ever. Caring is 24-7; it is relentless. Carers do not have time to protest either. They have very little time to contact their local representatives and, therefore, it is really important that we provide the services they need without exhausting them further by having to campaign for basic requirements. As I said, certainty around the availability of respite is so important for carers. They can look forward to it, they know it is coming and for that to be taken away is really annoying.

It will not surprise either of the Ministers of State present, and I commend them both, that I want to raise the issue of Mulcahy House, which is part of St. Aidan's day services. I have dealt with St. Aidan's for decades. It provides fantastic services in north County Wexford. Mulcahy House was providing respite services for approximately 80 service users but it has been closed for three months for want of staff. The official statement from St. Aidan's services says that they are facing the full impact of the recruitment and retention issues being faced by other service users. This vital service that everybody, including St. Aidan's services themselves, recognise is critical cannot be provided. People who have booked dates in the coming weeks are now being told that respite is not available because they do not have the staff to run the service. The fear is that it will never be available again. It is just shocking. It really is shocking and it is cruel on top of everything else.

I ask the Ministers of States to see what can be done on the recruitment of staff issue. I raised it as strongly and passionately as I could last week during the debate on the Labour Party motion on our approach to recruitment. We know and can profile future need so let us prepare for that by having the staff available. If there are issues of pay, which clearly there are, with people who are working in such services moving into education or into other services that are better paid, let us resolve those issues once and for all. This country is very wealthy now. I wish I had control of the purse strings in such plentiful times. I did not but we can now resolve perennial issues such as respite care. We have the resources to do it if we have the drive to do it. It will mean a degree of co-ordination that does not exist right now, a degree of planning, and the creation of national pools. All of these things should be done now. They might not have instant returns but they will have medium- and long-term returns that will be vital for the provision of decent healthcare in this country. I ask the Ministers of State here present to think of the families adversely affected in north Wexford today because of the closure of Mulcahy House in St. Aidan's services and to try their best to provide a solution that gives them hope that their respite services will be replaced.

Holly Cairns (Cork South West, Social Democrats)
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I thank Sinn Féin and Deputy Tully in particular for this important and timely motion, which the Social Democrats fully support. It is another week and another motion on the disgraceful state of our disability services, with another reminder that life is harder, more stressful and more expensive when someone has a disability in Ireland. The motion highlights the unmet need in terms of respite care, with particular reference to the lack of respite beds in Cork. Last week we discussed the 10,696 children who have been waiting for more than 12 months for initial contact with a children's disability network team, CDNT, and two weeks before that, we debated a motion on the utter failure of this and previous Governments to replace the mobility allowance and motorised transport grant since it was discontinued for new applications in 2013.

There are common trends here, including a disregard for people with disabilities and an uncoordinated and antiquated approach to understanding disability. The Government has been busy infighting and kiteflying on proposed tax cuts at a time our disability and health services are shockingly understaffed. How many more Opposition motions do we need? How many more disabled people have to come forward and tell their story? How many more parents will have to save and sacrifice to afford private services that should be provided by the HSE?

Those living with a disability in Ireland are at a significantly greater risk than non-disabled people of experiencing poverty, social exclusion and unemployment. Indeed, we are the highest in the EU when it comes to unemployment. Disabled people also experience barriers in transport, housing and education. Another way is possible however. Week after week at the Joint Committee on Disability Matters we examine the importance of a rights-based approach. We also see how children and adults with disabilities are denied their rights to education, healthcare, to live independently and to work. The Government would claim that it is committed to a rights-based model but this is evidently untrue. One of the most concrete actions the Government could take, if it was willing, is to ratify the optional protocol of the UNCRPD. This mechanism allows individuals and groups to hold the state to account for failures to uphold their rights by making complaints directly to the Committee on the Rights of Persons with Disabilities. Ireland is the only country that did not do that. I have consistently and repeatedly asked the Minister to show he is committed to a rights-based approach by ratifying the optional protocol. Not only does the Government keep refusing to do so, it keeps shifting the goalposts on why it cannot. For ages it cited the assisted decision-making capacity legislation but that is done now. What is the next excuse? It keeps changing. The Social Democrats are fully committed to ratifying the optional protocol and guaranteeing rights through the introduction of a statutory right to home care and personal assistants. We would commence, in full, the Education for Persons with Special Educational Needs Act 2004, also known as the EPSEN Act, and the Irish Sign Language Act 2017. These are all actions that the Government can and should take, and can blatantly afford to take at this time.

Respite is an essential part of disability services but it is clear that there are very few respite beds and community services. When talking with families, one of the issues they often bring up is the lack of respite services for children and adults with disabilities. Many people in my constituency have not had any respite care at all since before the pandemic. In Cork, there are supposed to be 27 beds for overnight respite services for children under 18 with an intellectual disability, physical disability or autism. However, ten of the beds in the words of the HSE are "suppressed or suspended" due to staffing shortages. Almost 40% of the respite beds for children and young people in Cork are just not available. The numbers are marginally better for adults, with six of 39 beds closed, also due to staff shortages and one bed only available at weekends. The total number on paper was already insufficient but the number of available beds in reality is shockingly low. This drastically reduces the chances of families being able to access respite and leaves overstretched and already exhausted families without basic services.

There has also been a gradual increase in the number of agency staff in this area but this is only a stopgap measure that fails to address the much larger systemic issue of staff in disability services. When discussing respite services, it is important to understand how important they are for disabled people, their families and carers. Research has consistently shown that respite improves wellbeing. It is about giving everyone a break and giving the individual and families some space. This gives everybody a chance to rest and recharge. We all know the incredible stresses faced by families with either children or adults with disabilities. Nobody can live under that pressure without it affecting their mental and physical health. Families and carers need respite.

A report from the National Disability Authority, NDA, explained that respite is an opportunity for disabled people to increase their independence, socialise with other people and experience new and different activities. This report, based on participation from people with disabilities, showed high levels of satisfaction with many aspects of respite services, especially the chance to get some time for themselves away from their families and to engage in interesting and meaningful activities.

The participants also noted that respite gave their family members and their carers, in particular their mothers, a break. Respite is an essential service. The Government has to recognise that. There is a pressing need for a drastic increase in our respite capacity.

In our alternative budget, the Social Democrats proposed moving towards an annual entitlement of 20 days' respite for disabled people and carers as part of the broader reforms needed to support family carers. Those reforms include increasing the rate of carer's allowance by €25 per week; instead the Government increased it by €12 per week. We also made provision for a cost-of-disability payment that would not be a one-off but that would acknowledge that disability is every day of the year. Respite needs to be treated as a vital service for disabled people and their families, and until the Government appreciates its importance and many benefits, thousands of families will continue to be denied it.

I have pointed out that respite capacity in Cork is especially poor. Service providers are overstretched and under-resourced. I think we all know that. In response to a parliamentary question, the HSE has informed me that the new development funding strategy under the national service plan, which provides for the 2023 Cork-Kerry community healthcare disability services, will mean that the funding available for expansion of respite services to CHO 4 is less than 50% of the usual annual development funding allocation for CHO 4 for respite services and contains no funding for residential respite. Any prospect to improve services in Cork, therefore, will presumably be impacted by that. That is unbelievable. There is also the ongoing impact of the proposed closure of the Owennacurra mental health facility, in Midleton, and the failure to set up a development team to establish a new ten-person mental health unit. Then there are the issues of the children in Carrigaline Community Special School, who cannot access overnight respite services. That is down to a complete lack of connected and child-centred services. The school is under the patronage of Cork ETB and the students are assigned to children's disability network teams run by service providers but do not have access to respite offered by the same service providers.

Finally, worst of all is that while all these things, a lot of the stuff we talk about, are about children's access to things such as the network teams, speech and language therapy, physiotherapy, places in special classes or autism spectrum disorder, ASD, classes, and special schools that are non-existent in many of our constituencies, after that, when you become an adult and you are a disabled person in Ireland, you have absolutely nothing. You are not even fighting for a place in a particular place. There is no provision in housing plans to build houses that are adapted for independent supported living. We saw the massive fallout of that in west Cork recently, when CoAction was potentially going to use a building purpose-built for children's day services to accommodate adults. The whole thing is a complete disaster. I worked abroad for many years in disability support services and have seen how good services can be and the very profound impact that that can have on individuals' and families' lives. I have seen the differences between learning and not learning how to communicate and people learning how to move themselves around independently, be it in a wheelchair or in whichever other way. That is the difference, and it can be done. It can be done so much better that I could not believe when I came back to Ireland years later and got into politics how desperate the services were here compared with those in other countries. The country I worked in was Malta. A lot of similarities could be drawn between here and there. There is no reason we cannot do this. We have the money. We need the political will, we need a connected approach and we need a rights-based approach to disability in this country.

Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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I welcome this motion from Sinn Féin. It is very topical, very well thought out and very relevant to issues around respite. I worked in respite for a long time. It is an essential service for service users and families. It is like a home from home. You build friendships with clients and so forth and you really cannot put a price on that development, that friendship, that care and those surroundings. Respite care is an essential service. At the moment, however, its provision is arbitrary, to say the least. The majority of people who need respite care are not getting it. That is a real shame because when respite care is put in place, it can be hugely beneficial for everybody who needs it. We saw that even today from MS Ireland, and I think the Minister of State was at its facility in Bushy Park. It is an amazing facility but they cannot open it all year round. If they could get a small amount of money - in the greater scheme of things €700,000 is a small amount of money in respect of the health budget - they could open it all year round. That would be amazing because it is an amazing facility and that could be hugely beneficial for those with MS.

I understand that there are issues around retention and recruitment, and there is no getting away from that. I think that is across the board as regards disability services. However, we need to put everything in place to fix that because if we do not do so, we will continuously have this debate on staff and pay and the issues around that.

Again, it is a real shame we are talking about this. We come to debates such as these, and they are worthy, but we should not be talking about this kind of stuff because this stuff should be in action and in place. If it were in place, we would not be talking about it and these services would be given to families who really need them. As I said, my experience of respite care has been that it is an integral part of people's development, and that relationship between the person, the family and the caregivers is an essential part of care. If we are not doing that as a society awash with money, if we cannot do that, there is something fundamentally wrong with our health service.

Bríd Smith (Dublin South Central, People Before Profit Alliance)
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I thank Sinn Féin for bringing this motion to us. The figures in the motion are stark. Three quarters of families get no respite care at all. In 2022 fewer than 5,200 received a respite service, despite the fact that there are 20,000 people or more with disabilities, including physical and sensory disabilities, or autism who need respite care. Fewer people received respite services last year, in 2022, than they did in 2018. We have to acknowledge, and it would be a really good start for the Government to acknowledge, that respite care is on its knees. Having been a carer myself, I know that the grant that is handed out to people is welcomed but, particularly nowadays, in a cost-of-living crisis, the grant for many families is used to cover additional costs associated with disability, that is, fuel, transport, medical and other costs that are particularly acute during a cost-of-living crisis.

The recent closures of services alluded to in the motion are shocking, and many Deputies have talked about local services that were recently closed. In my constituency, in Cherry Orchard, where there is a community-based hospital, respite wards were chipped away at over many years and, despite very vocal, loud, cross-party, local campaigns to try to ring-fence and save those services, they have been, as I said, chipped away at and are very limited now in what people can receive. Yet that is a very large community in west Dublin that covers areas like where Deputy Gino Kenny is a Deputy, where I am a Deputy and beyond in Tallaght etc., and we are looking at a real crisis in respite care.

There was a move last year - or maybe it was the year before; it was mentioned earlier - to close Cuisle, in Roscommon. Unfortunately, it did close, and the Minister of State was possibly there talking to the people affected outside the gate. The users and their families came here and told us in graphic detail what that hotel meant to them, particularly the users, the people with disabilities and challenges who looked forward so much to having the option of a holiday in Cuisle, Roscommon, every year. It is not just any old hotel that can cater for the complex needs of people with mobility issues, feeding issues and medical issues, but Cuisle in Roscommon did that. Surely now it is time to stop closing any more respite services and to give those who care in our society a break. They have given the State so much. We need to increase the respite grant and we need to ensure that no more services are closed.

I know that others have referred to it but I will talk about Mulcahy House, in Gorey, briefly. We are told that staff challenges have closed it for 12 weeks. That is a three-month period over the summer, and parents, caregivers and people from all over the community marched down Gorey's Main Street peacefully with one aim, namely, to call for the reopening of the services. They consider it a lifeline. I quote Janet O'Hagan, whose 21-year-old son requires full-time care:

I'm rearing my son myself. I don't have any help so when this respite shut down, it meant there's no break for me. My son is ... 6 foot 6, he has moderate to severe autism [and] he has a lot going on. The respite was my only break. I basically just got a letter to say we're closing it down [with] no consideration for the domino effect that would have on me and my son.

Ms O'Hagan has no respite care for the first time in 20 years.

This kind of message is repeated time and again by various service users. It is heartbreaking to read through such accounts.

Ms O'Hagan also states:

This is my life. There's no one knocking on my door to make sure I am ok. It is very isolating ...

She adds:

[A]lthough I adore my son, he also needs the help. He saw it as a holiday and would say Mam I am going on my holiday when he will get the break and the respite centre."

Deputy Gino Kenny has testified to this.

It is time to give carers and those they care for a break and to ensure respite services are ratcheted up and no more services are closed down. How do we do that? The answer is in the thesis Professor Kathleen Lynch submitted to the Joint Committee on Gender Equality recently. She has written a book called Care and Capitalism: Why Affective Equality Matters for Social Justice. What she argues is very interesting because she has studied carefully what is happening not only in respite care services but also in all other care services throughout society. She argues that we have to place care, love and solidarity at the very centre of human life. She states that according primacy to care in life is essential. She quotes the following:

Because we become what we live, the work that we do, and what and who we value while doing it, have a major impact on our character and who we become.

Therefore, care is not removed from social justice. In the context of the crisis we are facing, which relates to staff retention and all the rest of it, I argue that we should start at the root. The root is where pay and conditions are not up to standard for people to sustain themselves in their jobs. I have known Deputy Gino Kenny over a period of 40 years. He loved his job. If people are not paid well enough to do the job they love, however, they cannot continue to do it, particularly in a crisis in which housing costs and rents are going up and up. Just as we have to consider the crisis associated with retention and nurses' pay, we have to consider the housing issue. If there are no homes for the people who do the care work, either on or off site, or if they cannot afford the housing, they will move on to different types of work, not the work they value and love doing or work of the kind that this society needs to repair itself, become more caring and become more involved in ensuring the solidarity we all need. None of us would disagree with that statement.

Professor Lynch's statement is very obviously about something that makes us human and goes deep into our psyche. The problem is the system we live under, which privatises care, does not look after workers and does not accord those who need care the centrality they deserve. Therefore, we have to start at the roots and examine the causes that are driving people out of their work. We have a staffing crisis in this area not because the staff do not love to do the work but because they are not paid and treated properly and because they cannot provide themselves with homes, which makes them move on. This will continue. There will be a domino effect until the Government regards the matter holistically, deals with this and acknowledges that care under capitalism is not working and that we have to have a different approach.

Seán Canney (Galway East, Independent)
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I thank Sinn Féin for tabling this motion. Every politician has experience of what is happening in his or her constituency and what is going wrong. We can all keep talking about what is wrong but it is a question of how to find solutions. The Government will tell us money is not the problem; however, if it is not the problem, how come section 38 and section 39 workers are on different pay scales and not treated the same as HSE workers doing the same job? What we are doing is playing one against the other. The HSE is robbing people from the organisations. Ability West, which the Minister of State, Deputy Rabbitte is familiar with, closed Avalon, a residential service in Galway city, in April. It had to take staff out of it to put them into other places to try to keep them up to the HIQA standard. By satisfying HIQA, we have lost a residential service. That is not right. We are just going the wrong way with it. Closing services is not the cure. We have to start at the root and ensure people are paid to do their job.

The respite grant should be increased in line with inflation and beyond that. We must consider seriously the carer's allowance and how quickly we can sort it out. Getting somebody a carer's allowance can take 12 to 14 weeks from the time of application, which is wrong. It should be done in a couple of weeks if we are serious about it.

One of the people who came to my constituency office with an issue was a 35-year-old man with two children with special needs. He broke down in my clinic for the simple reason that he does not know what will happen his children when he passes away. He is a young man but is thinking like this already. On "Liveline" or another radio programme, I heard a woman speaking about her child. She said she was "afraid to die" for the simple reason that she did not know what would happen her son afterwards. She said she would die in the belief she had failed him. That is not right. It is not the way people should be living. People of 35 years with two young children should be enjoying life and the fact that they are bringing up children rather than breaking down. I am referring to the circumstances of professional people who break down in my office or anybody else's office.

I am not blaming the two Ministers of State opposite but saying they are in government and that we need to start to turn things around. This matter is historical. During the period of austerity, we took money off the services in question because those availing of them were silent, not the people who could shout and roar. We have not repaid them since.

I do not believe we have any overnight services in Galway East, my constituency. We certainly do not have any residential services. There is talk about them. A person in my constituency was offered residential care in Castlerea or Westport. Is that respite? It is absolutely crazy. It is important that we genuinely consider those with a disability and the respite that carers need, asking what we will do for those who need a service.

Another major issue is that home care hours are not available even though they are being allocated to people. A man who rang me two weeks ago is in his 70s and has a 47-year-old son who was allocated three hours of respite in 2019. He has not seen it since. Now the allocation has gone up to ten hours but he does not know whether he will get one hour. I am referring to a man in his 70s and his wife who are looking after a 47-year-old son with special needs and who cannot get home help hours.

The contract for private care providers has been delayed for I do not know how many years. The Government should not blame Covid for this. It has gone way past that; it is a joke. There are young people who spend perhaps a year or two with a home care provider after training and then move to the HSE. That is not right. We have to have parity so we have quality. There is a huge body of work to be done in this regard.

Peadar Tóibín (Meath West, Aontú)
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I want to mention a tangential issue, namely, the crisis affecting nursing homes at present. The Ministers of State will be aware that nursing homes are closing right across the country and that many are blaming what they call fair deal discrimination. These nursing homes claim funding is insufficient to meet their spiralling inflation costs and the figures bear this out. Recently published figures from the HSE show that HSE nursing homes are currently receiving 70% more per resident than private nursing homes, which translates to as much as €744 per resident per week under the fair deal system. This is having a significant effect. I was talking to an individual yesterday who told me that CareChoice, which owns 14 nursing homes around the country, has stated it is pulling out of the fair deal system because of the lack of funding. It states the National Treatment Purchase Fund, NTPF, is not negotiating with it in real terms and that it is not even reverting to it on proposals it is making.

One private nursing home with 78 residents under the fair deal scheme stated that it had two months of money left and would no longer accept the fair deal system. This means that the families will either have to find the necessary funds to pay the total cost of the private nursing home or they will have to withdraw their loved ones from it. The former is not an option for most and the vast majority would find the latter option a disaster. The 99-year-old father of a family I know is located in one of these homes. His family do not have the money. If they pull him out of the service, it will significantly discommode him from the secure life he has known for years. They will remove him from all the friendly and recognisable faces he knows and try to find a space for him in a shrinking sector. A woman who is in a secure dementia unit has been told by CareChoice that it can no longer provide that service under the NTPF. CareChoice has stated that the NTPF has only sanctioned €2.28 per day per resident to meet the cost of inflation. This seems extraordinary. I ask that the Ministers of State intervene to ensure that the NTPF is negotiating on a fair basis. It is shocking that, just after the Covid crisis, we are at the precipice of many nursing homes withdrawing from the fair deal system. I understand that both sides may be playing hardball in the negotiations, but this situation is scaring the living daylights out of hundreds of families across the country. I ask the Ministers of State to step in and ensure that we have a system that functions fairly and in which families get equal funding.

Respite is an essential service for many families, not an added extra or a luxury. Many people depend on it. For some, it can even be a matter of life and death. Incredibly, though, 75% of families who are in need of respite are not receiving it. Worse, the provision is in reverse. This is an incredible legacy for any political party. Service levels are falling for people around the country. Like the nursing home and childcare sectors, providers are shutting their doors. Staff are not being trained to the level required to man the system. There is no staff retention because there is not adequate pay and the terms and conditions are not good enough. Recruitment and retention are not rocket science. If you own a shop in a small town, you have to have a recruitment package that is competitive relative to other businesses that are employing the same people. That is not happening in this context.

It is not by accident that people in nursing homes, those who use respite centres and even young people who use childcare seem to be at the bottom of this Government's list of priorities and are not receiving the investment they need. These are the least powerful people in society and, as a result, they get the least from the State. On behalf of exhausted families who are at their wits' end and who are awake night after night looking after loved ones, I plead with the Government to show them that there is some light at the end of the tunnel, to develop a long-term plan that is backed up with multi-annual funding, to pay decent wages to workers and to build a model that does justice to the phenomenal work being done by so many families day after day.

Seán Ó Fearghaíl (Kildare South, Ceann Comhairle)
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I understand that Deputies Michael Collins and Mattie McGrath are sharing time.

Michael Collins (Cork South West, Independent)
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I beg the Ceann Comhairle's indulgence for a couple of seconds, as I wish to pass on my condolences to Ms Vera Twomey and her family on the death of her daughter, Ava, over the weekend. Vera fought a brave battle for her daughter. Many of us fought that battle with her. She put her blood, sweat and tears into fighting for her daughter's life. Sadly, Ava has passed away. I have stayed good friends with Vera. I was talking to her only two weeks ago. She was in a desperate fight again for her daughter's life at Cork University Hospital, CUH.

The lack of respite services has taken a heavy toll on families caring for relatives with disabilities, exacerbating their struggles during the pandemic. As Covid-19 swept across the nation, respite care facilities closed their doors or scaled back operations to mitigate the risk of infection. Unfortunately, these services have yet to return to pre-pandemic levels, leaving families without the vital support they desperately need.

Respite for carers is a significant issue in west Cork. One of my constituents - a single mother with a 14-year-old boy with severe intellectual and physical disabilities who is wheelchair-bound, has to be lifted and carried everywhere and is totally dependent on his mother - has told me that she has not had a full day off in a whole year. She has been pleading for residential respite but has not yet been able to avail of this service. Recently, I mentioned in the Dáil the case of an elderly couple in the Beara area whose son was profoundly disabled, both intellectually and physically, and who had no home support at the weekends. The 69-year-old mother told me that she got €137 per week under the carer's allowance for providing 24-7 care for her son. At weekends, this woman has to employ private help to lift him in and out of bed, change him etc. Those eight hours of help cost her €160. That this woman and her family are left in such a situation is shocking, to say the least.

Obviously, parents love their children but everyone needs a break. Unfortunately, they are not getting one. Requests from elderly parents of adult children with disabilities whom they can no longer care for safely in the home but for whom they cannot get places in long-term residential care are upsetting to hear about. It is shocking to think that our services have come to this. These examples are from my area, but I was in Cork early this morning waiting for a bus to Belfast when a parent from outside my constituency asked whether he could speak to me for a while. He told me that he, his wife and his daughter were trying to care for another daughter for whom they were no longer able to care. He said that no one could help them. He asked whether we could do something. We will always do our best for someone but we are limited in the advice we can give people about what services are available, even in Cork city. He said that he and his family had reached the end of the road and their situation had become a nightmare for them. He said they had got away for a break for one day out of 65 days but that family members were left trying to care for someone for whom they were unable to care. I met this gentleman in Bishopstown Court, but this shocking situation is replicated in Clonakilty, Bandon, Kinsale, Mizen Head, Sheep's Head and the Beara Peninsula.

The whole system has broken down. This motion is on respite care, but I know a double amputee who cannot get home help and cannot leave hospital right now. I meet a lot of people who are looking for home help. We are being told that no home help is available, but when I meet the home help staff who are doing this work in west Cork, they say they would love more hours but are not being given them. A game is being played, yet the system will not be investigated. We are not fools. Most of us politicians have our feet on the ground. We are meeting people and talking to them, including lovely home help staff who are working hard in their communities. They are willing to do more work, but they are not being given any to do, all while genuine people who are seeking home help cannot get any.

There are children waiting four years for occupational therapy. It is one issue after another. Even the private health insurance system is breaking down. I know someone in Bantry who is on the flat of his back and desperately needs an operation. He is paying top dollar for private health insurance, but he has been told that he will have to wait up to six months for his operation. The whole health system seems to be on shaky ground. I do not see anyone standing up and putting forth a solution to these issues. Home help workers are telling us that they are willing to work while the heads of that service say there is no one available to do the work. There are people crying to come home from hospital and there are people at home who are crying in pain. An 81-year-old gentleman on Mizen Head tells me that he wants to get home help before he falls down. If he gets home help now, he hopes to be able to work with the staff and keep his health, but he has been told that he is too sprightly for it and should just keep going because he is all right. If he falls on the ground, he will become a liability to the HSE and a cost to the State, but he would be happy to get a little help now. He pleaded for it but was refused. Many people find themselves in this unfortunate situation. I hope that the lack of respite services for people who are working hard in their homes can be turned around. It is desperately needed.

Mattie McGrath (Tipperary, Independent)
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I too would appreciate it if you would allow me to express my sympathies and those of my family to Vera Twomey on the death of Ava. They both fought such a battle for life. It just tells us how fickle life is and how some people get the short straw. It has been a constant battle. She had some battle to navigate the political system. It should not have to be like that for the sickest of children.

I compliment the proposers of the motion on raising this significant issue. The dysfunction in the HSE is just appalling. We could all raise countless cases. There is one family in Clonmel, the Arrigan family, and my late brother, who was a pediatrician, looked after their child. He is now a young adult. Every service is fought for and must be begged for with kicking and screaming. Ironically, his house is only from here to the Kildare Street gate away from the hospital, but at times they waited three and four hours for an ambulance. It is just shocking the effort Michael Arrigan, his wife, family and other siblings are putting into caring for this profoundly challenged young adult. They have significant issues with everything. They have got hoists and different pieces of equipment they need but it is always an unholy battle.

At the moment they have another battle on their hands because the system is so cumbersome. They have to get an awful lot of medicines. They are inundated with waste from bottles, plastics and Pampers nappies. It is not nice language, but it is shocking, and they cannot get any bit of respite or support from the county council on the disposal of the waste. The HSE will not take responsibility for it, and the county council will not give any discount on it in its bring centres. The cost is enormous. One would not imagine or even consider that there might be such a cost but it is enormous for the containers and other disposable equipment that they cannot dispose of. They are in a house on a small income and they are dedicated to minding their children.

The services in general are so hard to get. The home help system is typical in that regard. It is an utter scandal at the moment. The latest carry-on with the Ministers and the officials is that it is no problem and 20 hours of home help is approved or for one hour a day or whatever else, but they cannot get the staff. I meet staff who tell me that they are slack. They say they could do with another couple of hours a day. If I mention their names, they are punished. They are dismissed or moved to some different area, which is shocking given the work they do for so little. They provide such a valuable service to people. They light up their lives.

The State is piggybacking on the work of family carers. It neglects them and does not support them. We saw the battle with young Cara Darmody. The Minister of State, Deputy Rabbitte, met her. I know the Minister of State made commitments last week on foot of the Labour Party motion. We will be watching to ensure those commitments are fulfilled regarding assessments being done privately if the State cannot provide them.

People like young Ava should not have to be advocates and fighting with every ounce of energy in their bodies to get services and to circumvent the system. The system should be supporting them. It should not be such an adversarial battle. The system must be compassionate, patient-centred and look after people.

Mar fhocal scoir, I pay tribute to every family carer, every carer in the system, whether in nursing homes or hospitals, and nurses who look after the sick and people who are challenged.

Joan Collins (Dublin South Central, Independents 4 Change)
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Before I speak on the motion, I would like to express my deepest condolences and sympathy to Vera, Paul and the family on the loss of their daughter, Ava. We should put that on the record of the Dáil.

Last June this House passed a Private Members' motion brought forward by Deputy Connolly. It called on the Government to:

- immediately reinstate all respite beds closed as a result of the Covid-19 pandemic;

- undertake a comprehensive audit of respite services, funded in whole or in part by the Health Service Executive, to establish the current provision of respite beds and the level of unmet need;

- as part of that audit, establish the level of provision of respite services in rented accommodation;

- provide the funding required to ensure on-going and sustainable capacity in respite services; and

- ratify the Optional Protocol to the UNCRPD.

Fewer than 5,200 people received respite care last year, down from more than 6,300 families in 2018. Some 120,000 overnight respite sessions were provided in 2022, down from 160,000 in 2019. There was no audit, no improvement in respite services, and no ratification of the optional protocol.

I do not see where any progress has been made on Deputy Connolly's motion. There has long been sustained calls for the importance of the work of family carers to be properly recognised in this country, by Members of this House, by civil society groups and, most importantly, by family carers, many of whom rely on inadequate fixed incomes from the State and underfunded public services. Those who get help from public services find underpaid and overworked healthcare workers, thousands of whom work for less than the minimum wage due to the massive amount of work put upon them, and services falling apart due to closures, underfunding and massive staff vacancies. Neither the workers in our care services nor the family carers, who more and more are filling gaps in our State's failing public services, are paid properly for the hours they work, if they are paid at all.

In many cases, people are receiving less money in real terms for this work than they were a decade ago. The respite care grant was €1,700 a year in 2012. It was replaced by the carer's support grant at €1,850. If we take the World Bank's inflation numbers, that €1,700 would be €1,983 now. If we want to take the consumer price index, it would be €2,016. Many family carers work 24-7, 365 days a year, without time off, without respite, without holidays and, in many cases if they do not meet the income threshold, without any pay. Family carers are not entitled to a single day off from their work, and the services they rely on to get respite are rapidly falling apart.

This is not a new story. The chaos in our public services is being felt more frequently by more and more people. From our care services to our hospitals to our social welfare supports to our housing supports, we find a lack of staff, a lack of funds, overworked and underpaid staff, family members having to step in to fill gaps, and people left to the mercy of a worsening housing crisis, a worsening health crisis and a worsening cost-of-living crisis. Frankly, our services are falling apart. Last week we heard of a Tipperary family that was told their one-year-old child would have to wait until 2028 for an appointment for an assessment of need. We saw the national disgrace that was the child and adolescent mental health services, CAMHS, report earlier this year. I know from work on the Joint Committee on Autism that there is an average vacancy rate of 34% across CHOs, which equates to approximately 700 full-time jobs. The vacancy rate for occupational therapists is 40%. It is 39% for psychologists; 28% for social workers, and 29% for nursing positions. I know of CDNTs with vacancy rates of more than 50%.

For some months, in my constituency three-month and ten-month developmental checks have been delayed or suspended in the Old County Road primary care centre because of a lack of public health nurses. The Curlew Road health centre in Drimnagh lost all its public health nurses when they were moved to Armagh Road to fill shortages there.

Last week, I raised the topic of foreign nurses brought to Ireland on the general employment permit, the majority of whom are from India. Many of them are qualified to work as nurses under the Nursing and Midwifery Board of Ireland but they are obligated to do a Quality and Qualifications Ireland, QQI, level 5 course on the role of healthcare assistant that costs up to €1,700, which many of them cannot afford. Their income is fixed at €27,000, set just below the €30,000 figure required to qualify to bring over a spouse, which means they cannot settle here. They are working in private nursing homes, filling the gaps of healthcare assistants who went from the private sector to the public sector to get better pay. The pay in the public health service is upwards of €33,000. Either their wages need to be raised from €27,000 to €30,000 or the threshold figure of €30,000 should be reduced to €27,000. I prefer the first option.

We cannot treat people like this. We cannot go out and poach people from other countries and then not give them decent pay or hours or the opportunity to bring their families over to support them. They are here to do a service for our country and we cannot treat them badly like this. I cannot think of a public service in this country that is not suffering from the same problems. There is money but not enough staff and there is no prospect of things improving because it is getting harder and harder to buy a house, pay rent or afford to live in this country. One would think that all of these failures by the Government could not be an accident. The people who have faced the brunt of these failures are family carers. There are 1 billion unpaid care hours carried out every year, which saves the Government €20 billion per year. It is €20 billion of unpaid work the Government is happy to let ordinary people carry out to cover up its policy failures and €20 billion the Government does not have to put into services, recruitment, paying staff or grants to pay carers what they deserve. Those who need care have no recourse because the Government refused to sign the optional protocol in the UN Convention on the Rights of Persons with Disabilities. If the people who have to live through the chaos in our services were able to bring the Government to court, it would have to start paying out some of that €20 billion it has been saving by pushing unpaid work onto carers.

I echo what Family Carers Ireland called for before the Joint Committee on Autism this morning. It called for a national audit of respite provision to be undertaken by the HSE, for a national respite register and for all full-time family carers to be given the right to a minimum of 20 days of respite each year, in line with the statutory annual leave afforded to paid employees. It also called for the implementation of the recommendations of the Citizens' Assembly on Gender Equality on reforming the carers' allowance, including changes to the means test; increasing the hours carers can work or study; reimbursing the costs associated with care; increasing respite provision; and providing a dedicated pension for family carers. It also called for reform of the carers' allowance scheme towards a payment based on needs, not means, along the lines of participation income for carers; and for the replacement of Article 41.2 with wording that recognises the societal value of care and obliges the State to support the essential work of carers.

I thank Deputy Tully for introducing this motion this evening. I support Family Carers Ireland's calls. I call again for the Government to implement Deputy Connolly's motion from last June. Nurses and healthcare workers deserve better pay, better hours and better conditions. Family carers deserve to have their work recognised and to get paid for their work. They also deserve proper, guaranteed time off and respite, as well as public services that are properly funded and managed, which support them and on which they and their families can rely.

Anne Rabbitte (Galway East, Fianna Fail)
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I thank the Deputies for raising this important motion. I am happy to have the opportunity to discuss the issue of respite services with them this evening. As my colleague, the Minister of State, Deputy Butler, has already stated, the Government is not opposing this motion on the grounds that we share a desire to see increased respite services for people with disabilities and the loved ones who care for them. I acknowledge there is unmet need in respite. I assure the House that along with the Department of Children, Equality, Disability, Integration and Youth and the HSE, I am doing everything possible to increase respite provision and improve access in a fair and equitable manner. As the Minister of State, Deputy Butler said earlier, there is a level of unmet need that the Government and HSE are working towards meeting. Unfortunately, that takes time but we are making progress. It has been a top priority for me to boost capacity since being appointed as Minister of State. Budget after budget, I have increased the money provided to ensure that children and adults can be supported. The overall investment in respite services went from €53 million in 2018 to €96 million in 2022. As I mentioned last week, over the last three budgets, more than 30,000 bed nights have been added to the system. In 2020, 87,000 overnights were accessed. We must bear in mind that this was during Covid, when respite had been curtailed. In 2021, more than 94,000 bed nights - 10% ahead of the national service plan target - were accessed. In addition, more than 16,000 day sessions were accessed by people with disabilities. Last year, more than 131,000 overnights and 28,000 day sessions were accessed by people with disabilities. The number of respite overnights was almost 42% ahead of the target for the year. This reflects the gradual return to pre-pandemic levels of service. While I read that into the record, I still recognise that more capacity must be added to the system. I must add also that from January to March this year, more than 33,000 overnights and almost 9,000 day-only sessions were accessed by children and adults with a disability. In that regard, I hope the upward trend of respite provision will continue this year. Since budget 2021, my first as the Minister of State responsible for disabilities, I have provided funding of the equivalent of 25 new respite services around the country. This respite has been a mix of services for children and adults. To be clear, I will continue to invest in the development of respite services over the course of this Government.

I wish to address staffing and the general issues of unmet need. Service providers are experiencing an unprecedented crisis in retention and recruitment across all health and social care areas. This is not unique to Ireland; it is an international experience. Ensuring an appropriate pipeline of suitable, qualified healthcare professionals is a top priority but it is set against a global shortage of healthcare professionals. While it is the position that vacancies should be filled by permanent, directly employed staff, it is acknowledged that in certain exceptional circumstances agency workers are needed to ensure service requirements are met. I would prefer to see agency staff going into the likes of St. Aidan's than seeing it closed for 12 weeks. I would not like to see the likes of Ability West children's services closed either. Half a loaf is better than no loaf at all. At the moment, I see many closures of services. We must be agile and pragmatic in our approach to ensure that our services stay open for our most vulnerable. While agency staff are utilised to support certain services, it is important to note that this sector is not exempt from the same national and international challenges regarding recruitment. The HSE advises that agencies are also experiencing issues in recruitment and, especially, retention of staff, whom they can lose to established services once a certain level of experience is attained. That is, unfortunately, why much of this occurs in section 39 organisations. It is vital that we see pay restoration and the pay gap addressed. According to the HSE disability services, after first prioritising staffing for residential services from which people cannot be discharged, next it must give priority to maintaining day services, as loss of service in this area could have huge consequences for families, including for parents who work. It can be a further challenge to maintain staff for respite.

All of this points to the need for workforce planning, on which significant work is under way. The Department of Health is leading on a comprehensive health and social care workforce planning strategy, action plan and planning projection model, which will provide demand and supply projections of health and social care professions, among others, spanning short-term, medium-term and long-term horizons, which will enable detailed planning for the period from 2024 on. In the context of work being led by the Department of Health, the Department of Children, Equality, Disability, Integration and Youth has established a working group from relevant Departments and agencies to work together on the supply issue concerning relevant, professional roles required for disability services. The purpose of the group is to identify which disability grades and disciplines are in need of increased supply, how many staff are needed in each grade and how the grades should be prioritised. Using this data, the group will then assist in examining the capacity of the professional and physical infrastructure of the higher education institutes to provide an ongoing sustainable stream of graduates to staff the roles. The HSE is also undertaking several workforce planning projects and working groups in disability services. A range of initiatives has been developed by the HSE's HR department to enhance and promote retention, attraction, recruitment and workforce planning for disability services.

I will go off script to answer some of the questions that were asked. I think it is important that I do so. Every month since the blow-up about not getting access to the HSE - I think it was in November 2021 - I meet with every single one of the disability managers in the HSE on a monthly basis.

We discuss assessments of need and respite, residential and emergency placements. These topics are discussed monthly, without fail. Not a month goes by when I do not address where we are with the delivery of services and what services are under pressure. Deputy Tully is quite right. CHO 1 is quite complex because it is divided into the areas of Donegal, Sligo, Leitrim and west Cavan, and Cavan and Monaghan. The Deputy is right in what she is saying. We cannot operate children's respite services in counties Cavan and Monaghan if they are only available every second week. This is not successful and it is not what good looks like. What good would look like would be every county having its own children's respite service. This would be at a minimum. It should not be every second week. The same should happen with adult services. This is the capacity I am trying to add in and to demonstrate.

The Deputy also knows how complex it is when an adult or a child goes into a bed. A child could have been left there because the family members were burnt out. That emergency space must then become a full-time residential one. While that child or adult is in that place, until a proper emergency place is found, that bed does not become available to allow other children to be able to use that service. One of the issues here, then, is this pipeline of building in the requisite capacity in respect of residential places and addressing the unmet need in this regard.

Regarding Cork and the issue raised by Deputies Pádraig O'Sullivan and Sherlock, which will undoubtedly also be referred to by the two remaining Deputies here from that county, it is important to address the issue of respite in the context of CHO 4. Last week, a television report by Paschal Sheehy on RTÉ examined where we were with respite care. I was horrified that the response was that other staff could not be used to ensure the ten beds in CHO 4 could be used. I am glad to say I met today with the leads of the education and training boards, ETBs, today. I met Denis Leamy and Pat McKelvey, from Cork ETB. I also met Bernard O'Regan, Yvonne O'Neill, Majella Daly and Tess O'Donovan, the new acting chief operations officer, along with representatives of all my lead agencies. The outcome is amazing. I am so delighted to say that additional capacity has been found in Enable Ireland, St. Joseph's Foundation and the Cope Foundation. All those organisations are working together now to ensure this capacity can be brought online for those children's services we are talking about to ensure the need for these services can be responded to in a more timely fashion in CHO 4. Additionally, it will ensure that children attending Carrigaline Community Special School will also have access to the respite services which will be brought onstream. As one of the representatives of one of the lead agencies said to me today, this will happen in weeks and months. It is anticipated this extra capacity will be brought on stream by then.

I thank Mr. Bernard Gloster and everyone else for the intervention to make the meeting today a successful one in terms of being able to deliver, add and create more capacity in Cork. I would like to think that we should not have to come to a crescendo at all times to be able to address children's services. What I expect is that no beds should be unused in children's respite services anywhere in the country.

Pat Buckley (Cork East, Sinn Fein)
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I thank Deputy Tully for bringing forward this motion. Carers work all year round. They do not get holidays and are not entitled to them according to Family Carers Ireland, FCI. We spoke about this issue at the meeting of the Joint Committee on Autism this morning. The representatives of FCI said that families who have members with autism have additional costs. This works out, on average, at €244 weekly or €11,700 annually in additional costs. It was mentioned already that FCI is seeking a national audit of respite services because we do not know how many beds are in the country. The other worrying aspect for FCI is that more than 50% of carers suffer with mental health issues.

While we are talking about respite services, there was a meeting on Wednesday, 8 February 2023 between the HSE executive and board members of the Owenacurra Centre. The Minister of State will be familiar with this facility. The startling thing about this is that we have lost 22 beds in Midleton, along with the associated services. I address this issue while we are talking about respite services here. I have raised this matter with the Irish Human Rights and Equality Commission and the European Ombudsman. I have minutes from a meeting and I would like to refer to them here. It was stated that the committee raised concerns regarding placements in St. Stephen's Hospital in Glanmire and St. Catherine's ward in St. Finbarr's Hospital in Cork, as these centres had received lower Mental Health Commission inspection compliance ratings than the Owenacurra Centre. Additionally, concerns were expressed in these minutes that these environments were congregated settings that were campus-based, isolated and away from communities in contravention of the UN Convention on the Rights of Persons with Disabilities, Government and HSE policy, as set out in the Time to Move on From Congregated Settings: A Strategy for Community Inclusion in Ireland. We have been raising this matter and the issue of respite beds. The minutes go on to say that during the meeting, some members of the committee expressed dissatisfaction with the need to transfer the residents away from the Midleton area contrary to their expressed wishes. There is, therefore, a bigger picture to consider here when we are talking about services and losing beds. This is a timely motion in that context. I admire what the Minister of State is doing and what she is trying to do. I just wanted to flag this issue with her because, like with everything, if we are being misinformed about this, she is also being misinformed. If the Minister of State is not getting the right information, she cannot do the right job. I thank her.

Anne Rabbitte (Galway East, Fianna Fail)
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Right.

Donnchadh Ó Laoghaire (Cork South Central, Sinn Fein)
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A mother contacted my office this month who was at breaking point. She is a single mum with two sons aged 17 and 14, both of whom have profound intellectual disabilities. She had not had respite since before the pandemic. She thinks December 2019 was the last time she got a break, which was three and a half years ago. It is scandalous that someone has not had a break for this length of time. She and her two boys are suffering as a result of the failures of this Government. Respite was the only thing keeping her going and, naturally, she is finding this incredibly tough.

Many of the people we are talking about in this motion are incredibly selfless. They are the very best of people. They make great sacrifices for their loved ones with minimum fuss. We often talk about unsung heroes in this House. By and large, many of these people are not looking for any great song and dance. They just want a rest and respite. Is this so much to ask? It should not be.

Overnight respite services in Cork for children aged under 18 with an intellectual disability, physical disability or autism are delivered by the range of organisations the Minister of State listed a few minutes ago. The HSE stated in a response to a parliamentary question from my colleague Deputy Gould that there were 27 beds in Cork, but ten of these were suppressed and suspended due to staffing shortages. The Minister of State has addressed this and said she has been in contact with the authorities in Cork. We will have to wait and see in this regard. I hope this situation is resolved, but it is scandalous that these ten beds are going a-begging.

Anne Rabbitte (Galway East, Fianna Fail)
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Yes.

Donnchadh Ó Laoghaire (Cork South Central, Sinn Fein)
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I am glad the Minister of State agrees with this point, but it is a scandalous situation. In the same response, we were told that HSE Cork Kerry Community Healthcare disability services had received their letter of allocation of new funding under the service plan for 2023. This funding for CHO 4 is less than 50% of the usual annual development funding for this area for respite. There is no funding for residential respite services. On top of the reduction in beds, therefore, we are fundamentally talking about less funding being provided for CHO 4. As far as I am concerned, this is pure and utter madness. Additional funding must be made available for additional respite facilities and respite nights to meet the growing demand for this service. The Minister of State has given the example of the families in the context of Carrigaline Community Special School and I am glad she has addressed this issue. There are many others, however, who need this kind of provision as well. We must, therefore, address the issues of funding and beds.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I welcome that the Government is not opposing this motion. The Minister of State, Deputy Rabbitte, has acknowledged that respite services are not receiving the support they need and rightfully deserve. These are vital services and must be funded adequately. The Minister of State must ensure all respite services are brought back, initially, to pre-pandemic levels, maintain existing capacity in the sector and prevent further closures such as those we are seeing in counties Donegal, Cork and Wexford.

The Minister of State and the Minister of State, Deputy Butler, referred to alternative types of respite. I know some of this is home-based and this is to do with what suits the person requiring respite and the family involved. I was talking, however, to a family who have been given a grant. I do not know if this comes under the respite heading, but it is definitely a home support grant for that family's teenager. A grant was provided which allows the family concerned to seek a person and pay him or her. It is only possible, though, to pay a rate of €13.88 hourly and the members of that family have told me it has been impossible to find people to work for this level of pay. The HSE has given the family this grant, but they have found it impossible to get people. While the grant and the hours are appreciated, they are just not able to find people to work for this rate of pay.

The disability capacity review identified major shortages in respite services for adults and children. It notes that fewer than one in four parents caring for an adult or child with disability receives any form of respite. It also recognised that latent unmet need could be considerably higher than what is recorded and that there is a potential need for approximately 20,000 additional respite hours. The important word is "potential", because we do not know what is required.

Deputy Collins referred to what Family Carers Ireland said at today's meeting of the Joint Committee on Autism. There is no audit of our respite requirements. It asked whether it was possible to have a register where family carers could register if they required respite and provide the details of the person who requires respite care, whether an adult or child, and what his or her needs are. I am not sure if that is something that could be done. It has to be very difficult to plan a service when we do not know what the need is. That needs to be addressed.

The Minister of State referred to the fact that sometimes respite beds are lost because somebody requires emergency residential care.

Anne Rabbitte (Galway East, Fianna Fail)
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That is the answer for Stranorlar. There are four beds there.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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It is a chicken-and-egg situation. If younger people were getting regular respite services, they might not need residential care as quickly as they do. Quite a number of teenagers go into residential care because they have not received the supports and respite in community they need. They then require residential care. This is linked to independent living. We know people are entitled to independent living under the UNCRPD. There is a deficit in that regard. I have heard from the council that people are languishing on waiting lists and housing is not provided until the HSE says that support is in place in order to assist a person to live independently. We also hear that it is the other way around. I hope the new national strategy for housing for disabled people will address that. Certainly, the Minister of State, Deputy O'Donnell, said it would and that its publication was imminent. I asked him about that a few weeks ago. He said it would be published in a few weeks. It is to be hoped that we will see that and that it will address some of the issues.

In previous alternative budgets, Sinn Féin committed to implementing the recommendations of the disability capacity review. It is almost two years since it was published and there is still no implementation action plan. We need to see that. We also consistently call on the Government to develop a cross-departmental strategic workforce development plan to train, recruit and retain enough health and social care professionals.

The Minister, Deputy Harris, said his Department only engaged in discussions around this with the HSE or the Department of Health. The progressing disability programme was planned from 2014 onwards. It was known then that we would need staff. I remember talking to managers of what were known as child development teams before CDNTs were formed. They told me there were waiting lists. What did we think was going to happen if the structure changed? There would still be waiting lists. It took some time to put the model in place, which resulted in lengthening waiting lists.

It is time to give families a break and provide vital respite services. Our motion urges the Government to work with stakeholders, including service providers in the sector, leverage all existing capacity in the sector, support the reopening of closed respite centres and implement a multi-annual strategic workforce plan.