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Dáil Éireann debate -
Wednesday, 22 Jun 2022

Vol. 1024 No. 1

Respite Care Services: Motion [Private Members]

I move:

That Dáil Éireann:

notes:

- that Ireland signed the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2007 and ratified the UNCRPD in 2018;

- that, notwithstanding a commitment in the Programme for Government: Our Shared Future in 2020, Ireland has not yet signed or ratified the Optional Protocol to the UNCRPD, making Ireland one of just three European Union member states to have taken no action in this regard;

- that, pursuant to the UNCRPD, Ireland is obliged to ensure assistance to the caregivers of children and adults with disabilities; and

- the integral role that respite services play in the provision of assistance to those caregivers;

further notes:

- the unacceptable number of people on waiting lists for essential respite services;

- that carers have provided increased levels of care with less support and respite during the Covid-19 pandemic, and on an on-going basis this impacts on the wellbeing of carers and persons requiring care;

- the significant human cost for those affected by the closure of respite services as a result of the Covid-19 pandemic, and the on-going acute levels of unmet needs;

- that the Disability Capacity Review to 2032 identifies significant levels of unmet need for disability services, and changes in the size and age profile of the disability service population will add to unmet needs over the coming decade; and

- that the Disability Capacity Review to 2032 highlights that access to residential care has fallen since the 2008 recession, and supply did not keep up with population growth but actually fell;

furthermore notes that:

- the consequence of a failure to address identified current and future need is likely to be increased demand for crisis unplanned interventions, at significantly higher unit cost than planned services;

- if resources in areas like respite or home support continue to be focused on crisis situations, at the expense of supporting other families, the resilience of these other families will be undermined; and

- the Government's policy is supporting the provision of respite services in rented accommodation consequent on the absence of appropriate and sufficient capital funding for respite services;

recognises:

- the essential function of respite services in supporting family carers and the person with a disability, both in the home and in respite centres;

- the integral role played by respite services in our health and disability provision; and

- the work of those providing respite services and, in particular, the work of family carers, who save the State billions of euro every year in unpaid care; and

calls 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.

I thank the Minister of State, Deputy Butler, for taking this debate and my colleagues, Deputies Pringle, Joan Collins, Harkin, Fitzmaurice and McNamara, for signing the motion. I do not anticipate that the Government will oppose it, but I am not sure. I have not received a copy of any amendment to the motion. The Minister of State is nodding her head, which I welcome.

I am not here in an argumentative mood or to fight. I am here chun an spotsolas a dhíriú isteach ar sheirbhísí faoisimh nach bhfuil ann, i ndáiríre, i nGaillimh agus is dócha nach bhfuil siad ann ar fud na tíre. Tá cuid de na seirbhísí ar fáil ach níl siad ar fad ar fáil agus tá éiginnteacht i gceist. Mar shampla i nGaillimh, de réir freagraí éagsúla tá sé leaba faoisimh i bPáirc Mhuirlinne agus tá dhá cheann sa Chlochán i gConamara. Braitheann sé ar an gceist a gcuirtear agus ar na freagraí a fhaighimid. Tá sé thar a bheith deacair, dá réir.

Is í mo m'fheidhm anseo inniu an spotsolas a dhíriú isteach ar an ábhar seo chun an fhadhb a aithint i dtús báire agus ansin chun réiteach a fháil. As I said, I am not here to argue. I am here to shine a spotlight on respite services. The motion is quite basic, recognising that we signed and ratified the United Nations Convention on the Rights of Persons with Disabilities in 2018 and highlighting that we have not yet signed the optional protocol to the convention. This makes Ireland one of just three EU member states that have taken no action in this regard. The motion notes our obligations under the convention, of which I am sure the Minister of State is aware. It further notes the unacceptable number of people on waiting lists for essential respite services. I will not go through the whole text. She has read it and has indicated she will not oppose it.

We ask the Government immediately to ensure all the respite beds that were in place before the Covid crisis are now functioning. Along with that, we call for a focused and comprehensive audit of respite services to be undertaken. I highlight the fragmented nature of the services I am asking the Government to audit. That audit should include establishing the level of provision of respite services in rented accommodation. This is an issue that has come up in Galway in a presentation by Brothers of Charity Services Ireland. That organisation has no capital ability to purchase buildings that are suitable for respite and is utterly dependent on the rental market. This factor has not been taken into account in any discussion on respite services. I will come back to it presently.

All of the statistics I refer to are taken from the national capacity review that was conducted in July last year. It looked at six areas, one of which was respite services. It is important to note that all of the areas the review considered are interconnected. It looked at residential care, adult day services, personal assistance and home support, multidisciplinary therapies, respite, and other community services and supports. I am zoning in on respite care but all the areas are interrelated, as noted in the review. There will be much more demand on residential services, for instance, if we do not provide appropriate respite services. Although I am taking one aspect in isolation, I acknowledge they are all interrelated.

Common to all six areas is that the demand is greater than the service capacity and that demand will continue to grow. The review points out this will have significant human costs. The only aspect in which I disagree with this is insofar as the future tense is not accurate. There already is a significant human cost to the failure to provide services. The report acknowledges that the current situation is absolutely detrimental to the resilience of families and their ability to keep going.

In chapter 8 of the review, dealing with respite services, the figures are startling. Fewer than one in four people with an intellectual disability and living at home with family, including only one third of adults, received any form of HSE-funded respite services in 2017. I understand the figures have got worse since then, going by the answers to my parliamentary questions. In addition, access to respite for people with a physical or sensory disability living at home was considerably lower than that. There is a substantial unmet need for respite. The allocation to cover the service is €16 million to €20 million a year, which seems to me a tiny amount of money. The important point the report recognises is that this significant unmet need has detrimental consequences for those requiring respite, including the people with a disability and those caring for them.

There is any number of reports I could refer to, which I usually do, but I will not refer to them today. The time has come when we must decide what we are going to do about this. The Minister of State, separate from her ministerial role, knows we in this House do our best to get answers by asking parliamentary questions over and over again. I have a bunch of such questions in front of me and I cannot make head nor tail of the responses I receive from the HSE. The latter talks about three agencies in Galway city and county providing respite services, but the executive is also an agent in this as a direct provider of respite services. In Merlin Park University Hospital, for example, there are currently six respite beds serving a city the size of Galway. Some responses I have received are more positive than others, indicating that there will be 13 beds by July or August or when the staff are in place. The situation remains that there are six beds in Galway city.

There are two respite beds in Clifden District Hospital. I am always reluctant to refer to a particular situation but, in this case, it captures the problem. The family in question has been told there is a space in Clifden, which is more than an hour's journey from the family home, for one week of respite, which family members have been begging for year after year. Other than this one week of respite, the family must look after the person who needs care. The answers coming back to questions on that family's situation lack any humanity. The response is that Merlin Park University Hospital is not suitable or there is no bed at this time and giving the contact details for Clifden hospital. There is no embracing the person who is doing the caring and no undertaking to provide some well-deserved respite for the loved one with the disability and the family. That is not happening.

The Minister of State has been to Galway to deal with another matter. There is language being used that serves to obfuscate, hide what is happening and make life difficult for people, when, in fact, we all want to ensure we have a better public health service. The problem is that services have been divided up and compartmentalised. I hope she will not state in her response that 10,000 hours are being provided per year. That does not mean anything. I cannot judge or analyse those figures. It would be great if I had a clear statement of what is required in Galway. The capacity review pointed to the unmet need but we have no idea what the provision is locally and whether it is proportionate to what is needed.

I spend my time reading information on this issue.

It would be easier to understand this if it was in a book written by Kafka, rather than being in a situation where we are trying to say sorry to a family for a bed not being available this week but assuring them that there will be one available at some stage. I cannot use any reassuring language like that. In addition, we then have the divisions in the system. In Galway, there three agencies involved, plus the HSE, as well as the private suppliers and operators of healthcare. It is difficult.

I will move to the answers I receive , what the people coming into my office are saying and the research being carried out. The Health Research Board states that its research is based on 65% of the service providers responding to it. I refer to the annual report on the national ability supports system, NASS. When I looked at this report, it tells us that 36,649 people were registered on the system. This represents only 65% of those in receipt of services. This means that NASS has inadequate data, and this is the system that has been set up to provide the data to allow the Government to make policy. These data are inadequate and we do not know why that is. Some service providers are returning information and some are not, and we have no idea why this is the case.

Turning to the renting of buildings, let us look at the presentation that all Deputies in Galway received, or certainly it was made available to them, just a few weeks ago from the Brothers of Charity, an organisation that has been on the go now for some 70 years. It referred to preventing carer burnout and the lack of funding for the provision of increased numbers of respite bed nights. The lack of respite services in Connemara was highlighted. That lack of services means that people must travel to the city centre to avail of respite care. Think of the impact that experience has on the person supported. Opportunities exist for this situation to be changed, but they cannot be availed of because the policy is to provide money for rent. A property has been identified in Connemara, but it is not possible to progress this initiative or there are certainly many obstacles to progressing it.

I refer to elements such as planning for the future, seeking our support, breaking down barriers to the provision of homes for people with a disability and enhancing access to capital funding for the purchase of residential and respite homes. I cannot remember the precise figure given for rented accommodation, but it was certainly striking. I will not try to repeat a figure that has gone out of my head, but it really jumped out because it referred to one tiny unit in Galway relating to a known developer or person. I refer to just renting one tiny unit, and this was just one example. I estimate that there are millions of euro going out every year to pay for rented accommodation in respect of which there is no security of tenure.

Another problem highlighted by the HSE and the agencies - and, in a sense, this is a positive one - is the inability to deal with this challenge as a result of the existence of standards and those standards being imposed. This is highlighted as being one of the barriers in this regard. I would have thought that was a positive challenge in respect of the necessity of raising standards. That must be done, however, alongside there being in place a Government policy that allows for capital funding to enable these measures to be carried out. As the disability capacity review points out, this approach is one that is, ultimately, costing more money. We are responding in an unplanned way. We have crisis interventions. We are breaking down the resilience of the families who are trying to provide this type of care more than 99% of the time. Those family members then end up needing care themselves. It is a vicious circle in the context of costs that are not justified and funds that should be going in at the beginning with proper services.

If the Minister of State has any influence at all with the HSE, it would be helpful if that organisation stopped the spin. It really would be helpful because the agency is there to serve, as I am here, and to use taxpayers' money to serve the people. We have a right to know how many respite beds are available in Galway city and county, and nationally. If those beds do not exist, then we must know precisely why and we also need to know about a plan for when they will be put in place. It is not okay to tell people that it will perhaps be in July, August or September, depending on which person is answering the question. The waiting lists from the agencies are truly shocking. I got an update yesterday, the longest day of the year, on respite days provided throughout the country, and I thank the HSE for that. It highlights that one of the problems is better regulation and that a significant number of respite beds have been used for long-term residential placements. This means that respite beds are going out of action because of the complexity and the age of the people presenting, who need more residential care.

All this was eminently foreseeable. Covid-19 was difficult, but we are supposed to have learned from the experience. We are supposed to be moving forward. If we look at the waiting lists that I have been told about in Galway, in addition to the six beds in Merlin Park, the two in Clifden and the two somewhere else that have not been identified, we have 66 beds provided by the agencies, such as the Brothers of Charity, Ability West, etc. Those beds are spread out. We have waiting lists of up to four years. I find it hard to accept that the lists have reached this stage. I have a breakdown of them, but it is too much to read out bit by bit. On one hand, I have a response from the HSE stating that there were five beds. On the other hand, when I look at the waiting lists, I see that children and adults are waiting anything from six months up to four years for respite beds. This information dates from a few months ago and I do not imagine the situation has got any better.

In addition to the spotlight on respite beds, I ask the Minister of State to commit in this regard. She seems to be doing so, if she is not going against this motion and is not seeking to amend it. I refer then to an audit being undertaken within a reasonable timeframe of all respite beds in the country and that the information in this regard be broken down by county. This audit should also show how those figures relate to the actual need which exists, given that the capacity review found there was substantial, significant unmet need in this regard. Ultimately, it is a much better way to go, in the context of value for money, to have a planned service on which people can rely.

When I looked at the opening section of the capacity review, I read the three introductions from the Minister for Health, Deputy Stephen Donnelly, the Minister for Children, Equality, Disability, Integration and Youth, Deputy O'Gorman, and the Minister of State, Deputy Rabbitte. The Minister for Children, Equality, Disability, Integration and Youth acknowledged our obligations under the UN convention. He then made an interesting point regarding the need for certainty or predictability in his overview. We do not have any of that now. We have a completely ad hoc, fragmented and disjointed service that is not at all based on right. Therefore, I appeal to the Minister of State in a spirit of collegiality for us to work together because this is an essential service. For families to get respite care is the most basic service. This is not happening now.

I thank Deputy Connolly and the other co-sponsors of this motion. I welcome the debate. As the Deputy said, this does shine a spotlight on things.

When I saw on the Order of Business last Thursday that there was to be a debate on respite, I was delighted because I believe it is a matter that we need to be debating.

I am responding to the motion on behalf of the Minister for Health and the Minister of State with special responsibility for disability, Deputy Rabbitte. I am also responding to it on my own behalf as the Minister of State with responsibility for mental health and older people. Furthermore, I am responding on behalf of the Government as a whole. I confirm that we are not opposing this motion. My answer will be in two parts. First, I will be speaking on behalf of the Minister of State, Deputy Rabbitte, about disability and respite, and then I will speak about my area of responsibility, namely, older people.

The one line that really stood out for me in Deputy Connolly's opening contribution is that the provision of regular respite care has been shown to delay or prevent the admission of service users to long-term residential care. It does work. From my constituency office and as Minister of State, I am acutely aware of the challenges for older people. I acknowledge Deputy Connolly's bona fides on this and the way she has addressed the matter today. For the past two years, she has been raising with me the issues of respite and older people in the Galway area.

We all recognise how important respite can be for relieving pressures and increasing the quality of life for families. We are committed to providing services and supports for people with disabilities that will empower them to live their lives and provide greater independence in accessing the services they choose. In addition, the Government policy is to support older people to live in dignity and independence in their own homes and communities for as long as possible.

The need for increased respite provision is acknowledged and reflected in the national service plans for 2021 and 2022. It has been reflected in the significant funding secured for the development of new respite centres, alternative respite and the expansion of existing services by the Government. I stress that the Government recognises the important role that family carers play in the provision of care. They are the backbone of care provision and have cared for the most vulnerable in our society during the Covid-19 pandemic. Whether caring for a child or parent with a disability or illness or an elderly family member, carers, through their selfless hard work, knowledge and compassion, enhance the quality of life of the most vulnerable in our society daily.

I am sure many here today know that respite can occur in a variety of settings for various lengths of time, depending on the needs of the individual service user and his or her family or carer. Respite is not always centre-based and can be provided in several alternative ways, such as, for example, in the home, from home to home and through family support and day care centres. I met representatives of the Alzheimer Society of Ireland on Monday morning and learned that €1.75 million was provided this year to support respite in the home. One of the key points the representatives made was that this was done because of Covid. They asked that the arrangement be continued because it suits some people.

As a vital part of the continuum of services for families, respite potentially helps prevent out-of-home full-time residential placements, preserves the family unit and supports family stability. All in government acknowledge there is a need for increased respite provision both for persons with a disability and older persons. Budget 2022 demonstrated the Government's commitment to improving services and supports for people with disabilities and their families, with a total budget allocation of over €2.3 billion. In 2020, funding allocated to disability respite services amounted to approximately €70 million. In 2021, funding of €5 million was provided for nine additional centre-based respite services to provide 10,400 additional respite nights along with a range of alternatives, including Saturday clubs, breakaway schemes and summer schemes. This year, in the 2022 national service plan, we committed to the establishment of three additional specialist centre-based services: one to provide specialist care for people with Prader-Willi syndrome and a further two to provide high-support respite for children and young adults with complex support needs. This is expected to provide 4,000 nights to 90 children and young adults who have complex support needs. Additional funding has been allocated for further respite services, which will provide 9,400 nights to 245 children and adults in a full year.

The Government also provided for an unprecedented level of investment in the 2021 budget to improve access to primary care services and older people's services, including €150 million in additional funding for home support to progress the development of a reformed model of service delivery to underpin the statutory scheme for the financing and regulation of home support services. This funding has been maintained into 2022, providing for 5 million more hours of home support, notwithstanding the staffing issues I am currently trying to resolve.

For older persons, respite care is an important element in the support of caring for service users within their own homes and communities. The provision of regular respite care, which is so important, has been shown to delay or prevent the admission of service users to long-term residential care facilities. It also supports hospital avoidance.

Respite care is provided in our public residential centres and also contracted by the HSE in private nursing homes. At the end of May 2022, there were 1,516 short-stay beds open across all CHO areas, 243 of which were designated as respite beds. Those are the figures for the whole country. There were a further 20 dementia respite beds, which are also exceedingly important.

The motion highlights that some carers have provided increased levels of care with less respite support during the Covid pandemic. I truly appreciate the human cost for those affected by the reduction in respite services as a result of Covid-19. While it is acknowledged that respite services operated at a reduced capacity throughout the pandemic, it is important to note that this was as a result of prevailing public health advice at the time and was singularly focused on keeping some of the most vulnerable safe during the pandemic. During this time, some respite centres remained open while others were temporarily repurposed as isolation facilities. Targeted one-on-one home support hours were offered in lieu of respite in certain circumstances, subject to the appropriate risk assessment. It did work in some cases.

As a Government, we are very much aware of the extraordinary work carried out by carers. Since everybody has my script and I am a little caught for time, I will skip the information in this regard. It is really important for carers and service users to ensure the demand for respite services and the unmet need of service users are addressed.

I am open to what Deputy Connolly suggested about an audit. I can give a commitment only in regard to an audit of respite beds for older people. I will talk to the other Minister of State, Deputy Rabbitte, about this. She is away on ministerial business at the moment, so she is not available today. I cannot give a commitment on her behalf but I would like to see the audit happen. We are currently auditing mental health beds throughout the country. An audit of respite beds per CHO is certainly something I would like, and I will get working on it.

It is important to refer to the Disability Capacity Review to 2032, published in July 2021 and which sets out the additional capacity required in specialist disability social care services in light of anticipated democratic change, and to address the gap between available services and the level of need. A disability action plan framework was published in July 2021, alongside the terms of reference for an interdepartmental working group to develop the action plan. The group has now completed its work and is now in the process of finalising the detailed, costed draft disability services action plan, with targeted respite residential capacity and alternative respite options as part of its range of actions.

I want to speak about the Government's commitment to meeting our duty under the UN Convention on the Rights of Persons with Disabilities, UNCRPD. Ireland ratified this on 20 March 2018. This marked an important milestone in a process to strengthen the rights of people with disabilities in Ireland that has gathered momentum since Ireland became a signatory to the convention in 2007. Ireland's approach to meeting the obligations of the UNCRPD is one of progressive realisation, each year moving forward on key reforms, with the obligations arising from the convention being met over time. Priority has been given to meeting legislative commitments and requirements initially. The Government recognises the importance of the optional protocol to the UNCRPD. The optional protocol is an international treaty that establishes procedures aimed at strengthening the implementation and monitoring of the convention.

Due to delays at UN level, Ireland's appearance before the committee will be delayed, possibly for some time. In light of this, the Minister for Children, Equality, Disability, Integration and Youth and the Minister of State, Deputy Rabbitte, have indicated they are open to earlier ratification, contingent on the State being in a position to meet its obligations. This is reflective of the State's long-standing approach to entering binding international obligations in good faith.

I do not have time to read the rest of my script but the Deputies all have it. I could have spent my ten minutes speaking about respite for older people. I am sorry I did not have more time but I will give a commitment on the audit of beds for older people. I will talk to the Minister of State, Deputy Rabbitte, about an audit on the disability side.

The findings of the HIQA investigation into the emergency department at University Hospital Limerick were extremely shocking and according to HIQA, could put lives at risk. HIQA's verdict was that the emergency department is under-resourced, understaffed and poorly managed. That verdict could be employed for our public health services as a whole. They are all under-resourced, understaffed and poorly managed despite the exorbitant salaries paid at the top of the Department of Health and the HSE. The same verdict could be doubly applied to the poor relation of healthcare in this country, that is, our mental health services.

This motion deals with the issue of respite care or should I say the almost complete lack of it. Only 3% of the overall €2 billion per year budget for mental health services is allocated for respite care. The section on respite care in the Disability Capacity Review to 2032 is remarkably short in what is overall a lengthy and comprehensive document. It comprises two paragraphs along with a box of key points. It includes statistics for 2017 which show that only one in four family carers for those over five years of age with intellectual disabilities received any respite care and that was the case for only one in three of those caring for adults. I welcome the Minister of State's commitment to conducting an audit for older people. It is key that we know what we are dealing with and then provide services.

The capacity review went on to point out that unmet need could be considerably higher, meaning we do not know the correct level of unmet need. In other words, the level of action we need can only be guessed at. There is no information as to what level of services exists now or a national breakdown of those services. The latest figures for bed numbers were for 2018. However, on page 15 of the review it is noted that access to residential care, a key element of respite care, has fallen since 2008. The shortfall is estimated at between 800 and 2,300 beds. The 800 number is based on a HSE emergency and urgent list which is not up to date, while the higher figure of 2,300 is based on restoring the level available in 2007. To deal with the backlog of unmet need and to account for future demographic change, an extra 1,900 residential places would be needed under the minimum scenario and an estimated 3,900 would be required to return to 2007 levels.

The motion calls for a number of urgent actions and for a comprehensive audit of respite services to be undertaken. The Minister of State has agreed to that. That audit may be provided by the HSE directly or through the voluntary organisations, funded as section 38 and 39 bodies, to establish the level of unmet need and what resources are required to meet it. The motion also calls as part of that audit for the us to establish the level of rented accommodation used for respite services. It seems there is a preference in the HSE for renting rather than buying homes to be used for respite care.

The motion calls on the Government to act now on its commitment in the programme for Government to ratify and sign the optional protocol to the UNCRPD. I note the point the Minister of State made in her speech about that being contingent on the State being in a position to meet its obligations. We must ensure that we meet those obligations as soon as possible. The protocol is an important addition to the UNCRPD, to which we have already signed up. It would allow individuals and groups to raise complaints if they believe their rights have been infringed by the State. It is important we sign the protocol because it would mean the rights of people would at least be protected. It would push the Government and future Ministers to implement the plan.

I met with the Oireachtas disability groups yesterday. They feel the disability capacity review action plan should be followed up on and there should be an implementation plan in that regard. I would like to hear what the Minister of State has to say about that issue.

I thank my Independent colleague, Deputy Connolly, for putting forward this motion and bringing focus to the necessity to fully restore respite care. The issue was highlighted during the pandemic. It was one of the many difficulties that were highlighted during the pandemic. Everybody was forced to live together as a family, which was all well and good but brought additional pressures to families without the additional pressures of having to look after somebody who was not fully able to look after themselves. The pandemic is still with us but is has now become endemic. During the pandemic, particularly during the lockdowns, and immediately afterwards, there was rightly a lot of focus on the necessity of opening special needs schools, etc., because families were under considerable pressure and the closures were having a negative effect on those children who attend special needs schools. Similar concerns were legitimately expressed with regard to those who needed respite care and the pressure that families were under. There was a little less focus on that issue. I thank Deputy Connolly for bringing focus to it. We need to restore respite services to the level they were at before the pandemic.

I did a quick survey of the HSE facilities in Clare to see where they were at in the past and where they are now. The discrepancy was enormous, which is in line with the point Deputy Connolly is raising. We should not necessarily have this discrepancy. People are equal and there should be a relatively equal level of service across the State. Not only is that not the case across the State, there are big discrepancies within Clare. The Minister of State is familiar with the facility is Raheen because she has visited it. That is a facility close to where I live and, in fact, it is close to me for a variety of reasons. There is currently only one respite place at Raheen Community Hospital. There were three places available before the pandemic. The Minister of State will have seen the hospital's new wing and it is hoped that when the wing is open, two extra respite places will be available, which will bring the hospital back to its pre-pandemic level of three respite places. Those two beds are closed because the hospital must maintain an isolation unit in case there is an outbreak of Covid-19. I completely accept that reasoning but I hope nobody is suggesting that respite care is not an absolute necessity. Certainly, nobody at management level in Raheen is suggesting that. Management is moving to restore those respite beds.

Regina House Community Nursing Unit in Kilrush has five respite beds now. It had six beds before the pandemic.

St. Joseph's Hospital in Ennis is the biggest community hospital serving the Ennis district. Ennis is the biggest town not only in Clare but in Munster. The hospital has no respite spaces now. There were seven places before the pandemic. That is a significant loss in a town the size of Ennis. Constituents who are trying to get family members into either respite care or into St. Joseph's have contacted me. There is a public consultation today on a new 100-bed facility to be opened in Ennis. I very much hope that constituents in Clare will avail of that public consultation because it is important.

Ennistymon in north Clare has five respite spaces whereas it had nine prior to the pandemic. Those nine included some short-stay beds for people who were being released from the acute hospitals without anywhere to go. Such people were availing of those respite beds on a very short-term basis until alternative accommodation could be found. Overall in Clare, there has been a significant drop in the availability of respite places, with a huge disparity in the level of the drop across the county. A bird's eye view of the issue needs to be taken by HSE management to ensure that one's entitlement to respite care and one's chances of getting that care are not reliant on a postcode lottery. I have already criticised the fact that we are already subject to such lotteries in the mid west with regard to accident and emergency units.

There is a horrible reality for families if people do not get respite care and if people are not able to look after family members. The last resort for every type of healthcare shortcoming is the accident and emergency unit. That is one of the many factors that is leading to the massive pressure on accident and emergency units. People have to go through the accident and emergency unit to get a variety of procedures.

I am aware of a case of a woman who was in an accident and emergency unit and did not need to be there. She was there because she needed a CAT scan. She said she would go home and make an appointment but was told if she went home she would not get it and that she must sit there and wait. That was not in the Limerick region but another part of the country. However, it is indicative of the lack of strategic management of our healthcare facilities. I am digressing slightly from this motion. I thank Deputy Connolly for introducing it and giving us the opportunity to ventilate it. It is hugely important. I support the motion.

I commend the Independent Group on bringing forward this motion. I and my colleagues in Sinn Féin will be supporting it. We need to recognise the key role respite plays in supporting persons with a disability and family carers. However, it is not enough to recognise the role respite services play as we must also ensure they are funded adequately.

Respite helps prevent out-of-home full-time residential placements, preserves the family unit and supports family stability. There are approximately 500,000 family carers across Ireland who work unpaid hours to care for and support their loved ones. Family carers have long been held up as a crucial pillar of care and support in Ireland and save the State billions of euro annually. However, time and again, they have not received the support they need and rightfully deserve. Respite needs to be tailored to meet the needs of families as one size does not fit all. Alternative respite provision is needed in a variety of settings and for varied lengths of time depending on the individual needs of the service user and the family or carer. This should include a mix of in-home or home-to-home family support, Saturday clubs, breakaway schemes and summer schemes. Many carers tell me the respite for their loved ones has been booked only for it to be cancelled at short notice if an emergency case arises. This should not be allowed to happen. Sufficient spaces should be made available to cater for emergencies and those who are booked into respite.

The disability capacity review identifies a major shortage of respite for adults with intellectual disabilities. It notes fewer than one in four parents caring for an adult or child with disability receives any form of respite. It identifies a major shortage of respite for carers of adults with intellectual disabilities. It also recognises latent unmet need could be considerably higher than what is recorded.

Sinn Féin has previously committed to a significant increase in spending for respite services. In March 2021 we introduced our own motion to the Dáil entitled "Caring for Carers". In it we called on the Government to implement a number of measures to recognise value and assist family carers, including a call to ensure family carers get the respite they need by building up respite capacity, including delivery of hours and overnights through a doubling of public expenditure. Within this motion we also recognised carers and disabled people are more likely to be living in poverty and called on the Government to establish a discretionary fund to aid carers and people living with a disability who are struggling with heating and electricity costs. That is now even more relevant due to the ongoing cost of living crisis.

Tinkering around the edges will not resolve the issues in respite provision. The Minister of State with responsibility for disability recently committed to properly resource respite services in each county. If I may speak for a moment about my constituency of Cavan-Monaghan, this is certainly not the case. Currently, respite services for both adults and children are provided in Annalee View, a respite centre in Cootehill, County Cavan. However, because adults and children cannot be facilitated together, the services are provided on alternating weeks with adults one week and children the next. This is not sufficient to deal with the large number of people who require respite services throughout the two counties. There is a need for at least two centres. This is not just an issue in Cavan-Monaghan. Respite is vital yet its provision varies greatly from place to place throughout the country and in many cases it is very limited, if it is available at all. When I raised the issue with the Minister of State, Deputy Rabbitte, I suggested she look at decongregated settings because many of them may be suitable for respite when the residents have been moved into community settings.

The motion urges the Government to ratify the optional protocol of the UNCRPD. The UNCRPD was ratified by Ireland in 2018 and exists to protect and reaffirm the human rights of disabled people. The purpose of the convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all disabled people and to promote respect for their inherent dignity. If proper independent living provision was made, as stated under the UNCRPD, there would be less need for respite within some cohorts of our population. The State plans to ratify the optional protocol after the first reporting cycle but that could take several years. It needs to be reconsidered and should be brought forward. Sinn Féin has consistently called for the ratification of the optional protocol of the UNCRPD and so has the Joint Committee on Disability Matters.

I once again commend the Independent Group on bringing forward this motion. Sinn Féin supports it but we also recognise that as well as additional funding for respite, family carers and disabled people need a number of further wraparound supports that are contained in our policy document, "A Charter for Family Carers".

The Minister of State knows family carers have had a very difficult two or three years, but it has always been something that is challenging. It can be rewarding but it undoubtedly offers significant challenges. Millions of euro are saved by the State through the sacrifices and efforts made by the 500,000 family carers. The least they deserve is the opportunity to have some respite. That is not just about reward or recognition but sustainability. It is about their ability to continue caring for their loved ones.

Unfortunately, over the course of the last few years and especially over the course of the pandemic, respite was one of the last things to recover. The Echo in Cork recently reported Elizabeth Maddox, who heads the Castlemartyr Family Carers and Disability Support Group, acknowledging the fact it is still not the "end game" for carers. She said:

I am very lucky because I have a good support system but most carers need a break. Although family carers seem to be over the worst of Covid, it’s not the end game yet. Carers have been locked down even more now. They are often very careful about talking about burnout because they don’t want to lead the person they are caring for to feel like a burden.

However, it is still the case that respite, while improved from the very worst times of Covid, is still not back up to where it was before and the coverage and types of respite available vary significantly from area to area. When you look at the capacity reviews that have been undertaken in recent years as few as one in four is getting adequate respite. We urgently need to address that because it is about sustainability and fair treatment for these carers as well. As a society, we really would be completely lost without them. The 500,000 carers save the State millions upon millions of euro.

I will raise a final point before I finish up. It is something I have come across on a number of occasions, namely, the ability of parents of a child with complex learning difficulties or intellectual disabilities to have a lifelong plan for their child. There is education but there is something of a cliff edge at the age of 18 years, where the services that are there are concerned. The question in every parent's mind is if they outlive them or if they are no longer able to care for them, what happens then? The fact there is not that certainty and that ability to plan into the future causes huge anxiety and fear. It is something we must look at to ensure there is a joined-up plan right the way up.

It is very hard to go back to a carer and tell them they are on the waiting list but unfortunately there is no respite for them. I recently had to go back to a lady in her 70s who is caring for a daughter in her 40s and was looking for overnight respite that simply is not there. I am sure it is something everyone in this House has had to do and it is really difficult. She is caring for her daughter who is in her 40s and wants to keep her at home for as long as possible. The Brothers of Charity, which provides much of the respite in my constituency in both Roscommon and Galway, is doing its best but it is doing so with a wholly inadequate budget. When parents or carers get to the point and must make that really difficult decision that they can no longer care for their loved one at home, they move onto another waiting list when it comes to long-term residential care. To be honest, I do not know how family carers are still standing. Of course, they are still standing because they love the person they are caring for but they have had a horrific two years in particular with Covid. Overnight they lost all their services and supports - the very little services and supports they had.

We are still waiting for the new national carers strategy. It must be published and must have ring-fenced funding to go with it.

It is also regrettable that family carers did not get the Covid recognition payment, given that overnight they lost their services and supports, and then had to care for their loved ones 24-7, in some cases on their own. I cannot begin to imagine how difficult that was. They deserve to be recognised with a fully-funded national carers strategy. They should also have been recognised with that Covid recognition payment.

I will also reference the long-stay contributions for residential support services. This was raised with me by a constituent whose son is in long-term care. The amount of money they contribute depends on the level of care that is required. There are three categories: a nurse for 24 hours; a nurse part-time; or no nurse and with little or no medical attention. The contribution paid should not be based on the level of care a person needs. That is wrong. There was just a standard payment where everyone paid it and that was it. That is the way it should be. I want to raise that concern about that legislation and the way those contributions are done.

I thank the Members in the Independent Group for highlighting this issue and for bringing forward the motion. The current lack of day and respite services for people with intellectual disabilities and their families has become much worse since Covid-19. Many of the families who availed of the limited services are telling us that the service has not fully returned. Disability and day respite services in many areas are extremely limited. This is having a detrimental effect on people with intellectual disabilities and their families, and the effect on the families in particular is absolutely huge.

Parents and professionals are reporting increases in cases of depression, anxiety disorders, psychosis, and severely challenging behaviours, including serious assaults. Many parents and struggling siblings may have serious health problems themselves or in many cases are frail and elderly. Again, there is a real fear of what is going to happen if something happens to them.

There is a private service in Dublin 15, which parents pay for themselves. It is a limited service where parents of children with additional needs can get some time together. One father said he uses the time to go down to his car to have a sleep because it is the only time he can have a decent sleep. Others use the time to shop or to do homework and connect with their other children. Sometimes we can forget that connecting with the other children in the family is very difficult when there is a child with additional needs.

For many with an intellectual disability, their entire social lives are based in and around their services, including their friendships, their activities and their routines. Many of them cannot understand why it is so difficult to access that respite care. Mental health services for people with intellectual disabilities also remain extremely limited. We need progress and development of respite services. I have been involved in co-ordination in this regard with Tusla. We have spent so much time trying to access services only to be told that there are years on the waiting list before a person could get any service, or the family might get one hour per month or of an evening. An overnight respite is like gold dust for many families. That really needs to change. I put it to the Minister of State that we need resources. The families, the parents, the carers, and the people with the disabilities need those extra resources. It is significant to be able to provide those supports and to provide assurances to parents that they would have access to respite care.

I thank Deputy Connolly and the Independent Group for bringing forward this motion on respite care services. Levels of respite services were seriously deficient across the country even before Covid-19. This has been an ongoing and long-term problem. The Minister of State, Deputy Anne Rabbitte, was in my constituency recently at a meeting in Carrick-on-Shannon. We met with a group of parents of adult children with intellectual disabilities and other disabilities who attend the St. Ciaran's centre. Many of those mothers, many of whom are getting on in life, related their experiences that morning in Carrick-on-Shannon. Some of them have had no respite for the past seven or eight years. Some of them might get one night maybe three times a year. That issue really must be dealt with everywhere in the country. I commend the Minister of State, Deputy Rabbitte, as she gave a commitment that morning to ensure that a respite house and residential facility would be built in Carrick-on-Shannon, and planning permission will, hopefully, be in before Christmas for that.

Cuanmahon in Sligo, which at present is a residential service being decongregated, is two large bungalows, kitted out and HIQA approved. It will be used, hopefully from Christmas onwards, for respite services. That is progress being made but it is progress coming from a very low level. That is the issue we have. At the moment for the vast majority of people in County Leitrim or County Sligo, there really is only the one place, at Tullaghan, which is a private company that provides respite service. It is completely overwhelmed and cannot cope with the number seeking respite services. That is the situation everywhere in the country.

Where is the facility the Deputy mentioned?

It is in Tullaghan, County Leitrim.

I also spoke with a person yesterday who related his experience of a man with a wife who has early onset dementia. The woman is only in her 50s and he has tried to care for her at home. He had to give up work. He is with her 24-7. It is a nightmare for that man and he has no services whatsoever, no respite is being provided and nothing is being done for them. This is despite continuous representations being made around this. The real recognition needs to be that it is not just about getting an audit done. Audits can take years. We need action to ensure the services are provided as quickly as possible.

I will start by paying homage to the activists in my county of Wexford. This is a team of mothers, fathers, and families of children with disabilities called FUSS - families unite for services and support - who are fighting to reform disability services. They have stood up and protested to make their voices heard. I salute their resolve and I stand with them. They are truly an amazing group of people who, every hour and every day of the lives, must fight for basic services for their children.

There are some 500,000 family carers in Ireland. They save the State millions of euro every year. Shamefully, they do not have adequate support or, in most cases, any respite at all. Their income is deeply inadequate and their role needs to be more clearly understood, recognised, and supported. The round-the-clock 24-7 nature of being a carer must be recognised. As a result of this, respite needs to be tailored to meet the needs of the family as one size does not fit all. Alternative respite provision is needed in a variety of settings and for a variety of lengths of time depending on the individual needs of the service user and the family or carer - for example, within home, home to home, family support, Saturday clubs, breakaway schemes and summer schemes.

This motion rightly states that carers have provided increased levels of care, with less support and respite during the Covid-19 pandemic. The impact of this on carers' well-being, their mental health, and the siblings mental health must be acknowledged, not by words but by deeds.

Despite home care being the preferred option for most people, there is no statutory right to home care in Ireland. We have an ageing population and by 2040 almost one quarter of our population will be over the age of 65. This means that demand for home care will increase dramatically. The waiting list figures for home support services in County Wexford were so dire that a review had to be conducted recently. The main finding of that review was that the fundamental issue was staffing. This is a huge worry for the more than 600 families who are waiting for those vital services. Family Carers Ireland in County Wexford do their utmost to fill the gap but they too are struggling with severe demand and inadequate resources. For example, they have 30 hours per week to offer the whole county. The issue of recruitment and retention of staff is most evident in day and overnight respite services. A centre in Wexford was recently told by HIQA that it did not have adequate staffing and so must offer reduced services.

I put it to the Minister of State that questions must be asked about why this is the case. There are reasons people are not going to work in this sector. There are also reasons they are leaving the sector in their droves. We need to get to grips with those issues and tackle them head on.

The motion before us today highlights some of the key areas of concern around respite services. I thank the Deputies wholeheartedly, and particularly Deputy Connolly, for bringing the motion forward. I hope that all Members will see the merits in the wording of this motion and will fully support it.

I welcome the motion brought forward by the Independent Group. It is a very important issue. Many of us know the key role that respite provides in supporting family carers and those with a disability. More than 500,000 family carers provide vital care and support for their loved ones.

I will raise one issue, in particular, that was raised with me by a family. They are really struggling to get carers. One member of the family requires a lot of care and carers are constantly not showing up. They cannot fulfil those hours and the family is left stranded. The person needs two carers at a time and if only one shows up it makes it very difficult. This is very challenging for them as a family. The individual who contacted me said that if carers are non-EU citizens they are entitled to work 20 hours per week. This should be increased to 40 hours per week in line with non-EU workers who work directly for the HSE and in private nursing homes. This would increase the number of carers available to carry out essential work. I am aware that such a proposal crosses over with the Department of Justice and that it is a complex issue.

What this person is finding out, as are many families across the State, is that the HSE and care homes are sucking away carers from visiting homes. That is having a negative impact on families, who are at their wits' end. They need this support but unfortunately they are not getting it. If adjustments were made and there was a level playing field for all people working in the care sector, that would help ensure carers, like the ones in this family, are not let down day after day.

Before the Minister of State, Deputy Butler, leaves, I wish to acknowledge that both she and the Minister of State, Deputy Rabbitte, to be fair to them, have gone out and met the people involved and tackled these issues head on and they are not sitting behind their desks in their Departments. On that basis, before she leaves, I want to acknowledge the work she is doing. I also raise the issue of the St. Francis welfare home in Fermoy, which was redesignated during the pandemic as a transitional care facility. My understanding is that it is to close temporarily. I just wanted to raise that with the Minister of State and acknowledge her work before she leaves.

I am glad to have this opportunity to support the motion put forward by the Independent Group. It is a vital motion and I am glad the Government is not opposing it. It has come to my attention that recruitment seems to be at the heart of this issue. We keep being told by the HSE and the Government that the lack of personnel to meet the demand is one of the basic issues. I have received responses to parliamentary questions about this. I asked the Government how much it is spending on recruitment via the HSE, that is, moneys being given to recruitment companies to recruit the talent that is required to meet demand, particularly in respect of respite, which is the subject of this motion. For 2020 and 2021, €12 million was handed over to recruitment companies to sort this issue. What are we spending the money on? Where is the value for money? Why is it that they have not succeeded in recruiting the staff we need to meet the demands of people in this sector who so badly need the services? We need to start auditing and questioning the amount of money being spent by the HSE. It has spent €12 million in the last two years on recruitment companies to recruit staff. I am being objective here but no one could argue that we are getting value for money with that kind of spend. If we were, we would have the staff in place to meet the needs.

The one issue I am constantly raising is that of Cooleens House, which is under the ambit of St. Joseph's Foundation. I am being told month in, month out and week in, week out, that recruitment is at the heart of the issue and that the centre cannot be reopened to allow people to avail of the services because it cannot recruit the required staff. One can only accept that answer for so long. If we are spending €12 million, surely to goodness that money, wherever it is being deployed, could find somebody to be able to reopen that facility. A person in charge is required. On top of that, there is a Darwinian competition going on whereby the HSE is taking staff away from section 38 and 39 organisations. The HSE is competing with voluntary organisations for staff, which the HSE is responsible for providing in the first instance. Cooleens House is like every other respite facility throughout the country. I only use that example because it is one I am familiar with.

We need to grasp the nettle in respect of the recruitment issue. For two years now we are being told the issue is recruitment and that we cannot recruit the staff. I do not think we are buying that anymore. We have been quite patient and people have understood that there is a recruitment issue but it is time for us to start drilling down and getting into the weeds of why we cannot recruit staff in a way that meets the demand and the needs of people who are affected. Speaker after speaker has said that families are coming to us as Deputies and Senators saying they cannot get respite care for their loved ones. When we question why that is, we are told it is because we do not have enough staff in the system. We need to start drilling down into why that is and how we can justify spending €12 million. The Government, through the HSE, has spent €12 million in the last two years giving money to recruitment agencies. What are they doing for that money? That is the question.

I welcome this motion. As I said, I am glad the Minister is not opposing it. There is also the issue of pay parity between section 39 organisations and the HSE. I accept the Minister of State has had meetings with the National Federation of Voluntary Bodies, FEDVOL, in respect of that and I understand that around €20 million is needed. The reason I am raising that issue is that there are two cohorts of people who are effectively doing the same job but because of a different governance structure, one set of workers is paid less than the other. Tackling that issue would go some way towards solving the problem of recruitment. We need a bit of energy around this piece of it. It is not fair at a time like this. I will go back to Cooleens House. When I questioned the Minister of State about Cooleens House, she noted that it has six rooms and provides enormous capacity for respite in north Cork. She acknowledges that the challenge of recruiting a person in charge is what is preventing it from being reopened.

I support the motion. I am glad to have this opportunity but we need to start looking at the recruitment issue. It has been thrown back at us as the reason for the delay or the inability to provide services. We are not accepting it anymore as a reason. It can be solved. The HSE must be questioned and interrogated more on how it can justify that kind of spend at a time when people are crying out for services.

I thank Deputy Connolly and the Independent Group for bringing forward this motion, which the Social Democrats fully support. I welcome this opportunity to discuss respite care. This motion goes to the heart of how the incredible role of carers is continually overlooked and undervalued by the Government and the State. The inadequacy in the provision of respite care is a symptom of a much larger issue. Carers are absolutely essential and provide incredible support every day, with disgracefully little State assistance in terms of payments and respite. Respite care is crucial for carers. It provides them with a much-needed break from the psychological and physical toll of caregiving, while also benefiting the person who requires care. We all know that carers have been paid a lot of lip service during the pandemic, but unfortunately this rhetoric has not been accompanied by substantive supports.

Family Carers Ireland’s 2022 pre-budget submission, entitled "The Forgotten Frontline”, perfectly sums up the position of many family carers throughout the pandemic. They provided essential care in the home and dedicated all their waking hours to caring for loved ones, in many cases without any day or respite services. While budget 2022 included some small increases in the weekly rates and long overdue changes to the means test, these measures were simply not enough to address the true cost of care, and they are even less effective now against the backdrop of soaring energy and household bills. A recent report into the cost of caring published by Family Carers Ireland found that the minimum essential standard of living costs for a two-parent household caring for an adolescent with a profound intellectual disability amounted to €752 per week, excluding housing costs. This is €244 higher than the cost for a two-parent household with an adolescent child who does not have a disability. With inflation having risen to 8.2% by the end of last month, this gap has undoubtedly widened since this report was first published in February.

In view of this increasing financial burden on carers, the absolute minimum the Government could do is ensure there is adequate access to respite services, instead of the current postcode lottery. Even before the pandemic and the cost-of-living crisis, the provision of respite was disgracefully inadequate. The State has for too long undervalued the role of family carers and, consequently, underestimated the importance of respite. Some of this is due to the fact family carers often suffer in silence. They get up every day and do this invaluable work with little fuss because they simply do not have the time to campaign for services, and they should not have to. The State should not need to be cajoled into providing basic services and supports.

When things reach a crisis point, however, they are forced to take to the streets. The recent Families Unite for Services and Support, FUSS, rally, which I attended with Deputy Shortall, co-leader of the Social Democrats, displayed parents' palpable despair. They have reached breaking point because the State is effectively ignoring and neglecting their children. These are children with disabilities and additional needs who are being left to languish on waiting lists, while their parents, who on top of their caring duties must now take to the streets, are undoubtedly fed up.

One of their requests relates to respite and the issue of open access to personalised budgets. If the Government were to address this issue, it would empower more people with disabilities and their families to make choices that work for them. This is about their rights under the UN Convention on the Rights of Persons with Disabilities, and about receiving the necessary supports to live as full and independent a life as possible, but the Government along with its predecessors has repeatedly failed to implement measures that would allow people with disabilities to exercise their rights as equal citizens. That is the very reason it has still not ratified the optional protocol to the UN convention.

I have continually raised the need to ratify the optional protocol and the Joint Committee on Disability Matters has also called for it. Last week, I attended the UN Conference of States Parties to the Convention on the Rights of Persons with Disabilities specifically to understand the role and importance of the optional protocol. In 2018, the then Government, some members of which still sit at Cabinet, was not shy about lauding itself for being the final EU government to ratify the convention, 11 years after it had been agreed. It failed, however, to ratify the very protocol that gives this convention teeth because doing so would leave the Government exposed, with nowhere to hide. It would shift the balance of power by giving citizens the ability to take cases against the State to the UN.

That is why the Government is dragging its heels, and it is an utterly shameful and cynical reason. Various Ministers have cited reviews, legislation and even the UN itself as reasons for the delay but as far as I can see, the only legitimate reason the Government has yet to ratify this crucial protocol relates to the fact it does not want to be held to account over its failures to provide an adequate level of disability services. After decades of failing to uphold the rights of people with disabilities, something needs to force its hand. This protocol could be that catalyst for change, not just in respite care but in every service needed to ensure the full realisation of the human rights and fundamental freedoms of all people living with disabilities.

When will the Minister for Health honour the Government’s commitment to ratifying the protocol, reinstate the respite beds lost during the pandemic and carry out an audit of respite services? These are legitimate questions we should not still have to ask. It has been 15 years since the convention was agreed. This farce must come to an end.

I am sharing time with Deputy Paul Murphy.

I welcome this important motion on respite care services. It is good we are talking about the issue but we have to view it in both a post-pandemic and a pre-pandemic light. Respite care services are a vital cog in the system of care. In a previous life, before being elected to the House, I worked in respite services so I understand their importance for family members and service users. For the people who work in respite and other care services, it has, to say the least, been very difficult over the past two years to deal with the ongoing public health emergency.

The provision of respite care has been arbitrary for the families trying to get access, and it has been very difficult for some families who just cannot get the hours. Earlier during the pandemic, the withdrawal of day and respite services had a profound effect. It is almost incalculable what it did to service users, children, family members and staff. The services were gone completely. If a person does not have a routine, a relationship with his or her peer group, an educational space or other supports, it can have a terrible effect on family members and others. The State is still recovering in that regard, as are the services. Will the Minister of State outline what the State has done to fill that enormous void that opened over the past two years? I will always be haunted by some of the news reports about families for whom that service was simply gone. It was so distressing to hear family members say they had nothing and describe how they could now see their child regressing,

Many carers provide a vital service, not only for their children, loved ones and so forth, and that can go unnoticed at times. There should be a statutory entitlement for carers to 20 days' annual leave for the work they do. That should be put into legislation in order that carers will be given time off. That would make sense and most people would agree to it, given there would be a significant benefit-in-kind to the State whereby carers would save it vast sums by avoiding the need to have their loved one enter a hospital environment.

Will the Minister of State outline his opinion on the effects of the pandemic on day services and respite services? Where have interventions been made to fill the void that has appeared? We need more resources, not least where that void has opened over the past two and a half years.

The central point Deputy Gino Kenny made is an important one, namely, that the undervalued and effectively unpaid work of carers saves the State billions of euro. Their work deserves to be recognised and they deserve to be treated properly as workers, part of which involves having the equivalent of annual leave in the form of a guaranteed and legislated-for ability to access respite care.

This is obviously linked to the general poor treatment of people with disabilities by the State. The Government signed up to the UNCRPD but then did not sign up to the optional protocol in order that people can actually take action to vindicate their rights.

I want to speak about the particular case of a woman I will not name to whom I spoke last week, which really illustrates the struggles that so many people are going through in this country. She has a son with complex physical and mental needs. Originally, it was agreed that she would get four hours of home care per week. That was increased to 12 hours of home care per week on the basis of their needs. Because the whole thing is outsourced, the companies involved said they would need two workers to do this because the needs are so complex etc. and they could not possibly provide it. Then, for a long time, no company was able to provide it. Incredibly, because the hours were not being used and because the needs are so complex and so on, those hours have been taken off her. In the midst of all that, she went to LauraLynn children's hospice in terms of respite. LauraLynn agreed to accept her son for respite care and then got back to her and said it could not take him because he was mobile and, therefore, did not fit the categories. It said this was not coming from LauraLynn; this was HSE advice. This woman told me her son is mobile in the sense that he can crawl. He is not able to walk but according to LauraLynn, he is sufficiently mobile in terms of the HSE rules and, therefore, she does not qualify for respite care.

This woman and thousands of people like her are at their absolutes wits' end. They do everything possible to struggle to take care of their loved ones and then the State does not back them up. The State does not provide the resources to actually facilitate them in terms of the vital role they play and vital work they do. I would like the Minister of State to comment on that if possible. It does not make any sense whatsoever to me.

I welcome the opportunity to speak on the subject of respite care today and thank the Independent Group for providing that opportunity. The importance of respite care should not be underestimated and in fairness, I think its importance is recognised by politicians from all sides. Despite the best will or good intentions of the politicians in charge, however, we must accept that there are huge problems with the system as it currently is. These problems are noted in the motion. There is an unacceptable number of people on waiting lists for essential respite services. There was an increased workload on carers with less support and respite during the Covid-19 pandemic, which has impacted on the well-being of carers and persons requiring care on an ongoing basis. There is a significant human cost for those affected by the closure of respite services as a result of the Covid-19 pandemic and there are ongoing acute levels of unmet needs.

Family carers are hugely important people whose contribution has been undervalued for too long. I had a recent visit with a family carer in County Wexford who told me she had been quoted a cost of €550,000 for residential care for one year. Let us not, therefore, underestimate the value of the family carer. People caring for loved ones in need of constant care and support provide a tough and draining devotion from both a physical and mental point of view. The constant commitment to this work under the most strenuous of situations is admirable and, in some cases, heartbreaking. Carers live their lives vicariously through their more in-need loved ones. We all know those in receipt of care can have a variety of different needs and may require care of different intensity.

A press release from the Department of Social Protection published in early June indicated that there are 121,000 family carers in Ireland. There are likely to be many more who perform the functions of a family carer without being officially recognised as such. I also note that the Department of Social Protection announced some positive steps recently, including an increase in the capital disregard for carers from €20,000 to €50,000, an increase in the weekly income disregard for carer’s allowance to €350 for a single person and €750 for a couple and the receipt by 121,000 carers and their families of the €1,850 annual carer’s support grant. These are all welcome supports but we must always ask ourselves whether anything more can be done.

That particular statement from the Minister for Social Protection refers to the tough position in which carers were placed during the Covid-19 restrictions when respite care was suspended for so many people who relied on it so much. I sincerely hope that approach is never repeated. As with so many things when it came to Covid-19, the decisions made at the time have consequences. Many service users regressed so much during Covid-19 that they will no longer leave their homes. Not only does respite care benefit the carers but it also provides variety and professional care to the person in need of the care. The removal of that support will have created stressful situations for all involved.

As we can see, this motion calls on the Government to do a number of different things. I will comment on some of them. It calls on the Government to immediately reinstate all respite beds closed as a result of the Covid-19 pandemic. It is a complete scandal that Covid-19 resulted in respite beds remaining closed despite all Covid restrictions being removed. How has this happened? How has this been allowed to happen? What is the Government going to do to solve the problem? When will the problem be solved? We need answers to these questions and immediate action to reinstate any beds that remain closed.

The motion seeks to 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 level of unmet need. This is absolutely critical. Whatever waiting lists exist must be cleared. Why is it that we cannot seem to provide a service without a waiting list of some description? In order for this problem to be solved, it is first necessary to establish the extent of the problem. It must be done immediately. Respite is vital to the mental well-being of carers and I cannot stress this enough.

The motion seeks to provide the funding required to ensure ongoing and sustainable capacity in respite services. I mentioned the other day, when talking about special educational needs, the constant battles people face every year to secure supports for their children. A similar situation appears to exist in the respite sector. Ongoing and sustainable capacity must be ensured. We cannot have families operating day-to-day, not knowing from one week to the next whether their supports will be there.

The motion calls on the Government to ratify the optional protocol to the UNCRPD. According to the Irish Human Rights and Equality Commission, IHREC, the Government decided in 2018 not to implement the optional protocol that allows disabled people to make individual complaints to the UN. The Government said it would ratify it in 2020 when it had made its first report to the UN. It is now 2022 and there is still no sign of this being ratified. Perhaps the Minister of State could outline the current status of that plan and provide a timeframe for its ratification.

Another important issue related to the area of care is the pension situation. The programme for Government refers to a pension solution for carers. I have raised this issue a number of times in sessions on promised legislation, as have many other Deputies. We are now more than two years into the term of this Government. The magic money tree has been shaken for so many wasteful causes yet carers are still without a pension solution. When will this be sorted out? When are we going to even hear an update on it? Any responses to questions to date have been sorely lacking in detail and targets or dates.

An RTÉ report today and yesterday stated that the number of HSE employees being paid more than €500,000 per year has doubled from three to six. This would be justifiable in an organisation that was operating efficiently.

It is totally unacceptable for an organisation that is in such disarray as the HSE is. The money used to pay those obscene salaries could be put to better use by getting people respite care and getting them off the waiting list. Carers are the people who are most in need.

I too thank the Independent Group and compliment its Members on bringing this motion forward. I note the Government is not opposing it. I hope this is not another one of the motions that the Government does not oppose but on which it does nothing.

We have to salute the carers. I wear the carers badge as often as I can - it is only a small thing - to recognise the strenuous and arduous work that carers do. However, they are being blackguarded by the HSE and the Department. I note the Minister of State, Deputy Butler, has gone, like the snow off the Comeragh Mountains. When she sees us coming in she cannot face us. She closed respite beds in Carrick-on-Suir hospital, which served her own area. That will give some idea of the mindset in the Government.

Tens of millions of euro are being spent each year on private companies for recruitment. They are an abject failure because they are not recruiting. Why are they getting the money?

There is also the issue of child carers. Many children are caring for their loved ones and grandparents when they should be at school or taobh amuigh ag súgradh, out playing. It is not fair to them. There are many anomalies. Carers do such valuable work. Then there is the wasteful HSE with people getting over half a million euro. It is totally out of touch with, and tone deaf to, what is happening in the country. The Minister of State, Deputy Feighan, and his colleagues will find that out when they go knocking on the doors. People will be waiting in the long grass for them, if there is any bit of grass given there is no fertiliser to grow it. However, the people will be waiting for them with the peann luaidhe because they have totally abdicated responsibility. All they want to do is serve global masters in Europe and to hell with the daoine, the ordinary people.

We all will need carers some day because many of us may have different needs, and we will know about it then. It is shameful and pitiful. I salute Councillor Richie Molloy, one of my councillors in Tipperary and manager of the south Tipperary carers association, and his gallant team, given the uncertainty they are experiencing. They have the begging bowl out and have to lobby and fundraise with walks, coffee mornings and so forth to try to keep the service going. It is shameful.

I thank the Independent Group for bringing this motion forward. Respite care centres are a gift in any community and can give those in need of care a break and give the family carer a respite from caring. In our community we are fortunate to have the Dromcollogher Respite Care Centre, which is a wonderful strength and resource. It is open to all areas in our rural community.

Respite care centres such the one in Dromcollogher are guided and regulated by HIQA to ensure the quality of care and safety of residents. However, I am adamant that there has to be a relaxing of the rules when it comes to respite care versus nursing homes. For example, living space and relaxing areas need not be as large. The brief for respite care centres is clear in that they provide short-term care for residents. The Minister of State, Deputy Butler, has visited Dromcollogher - I was there when she visited - and she has seen at first hand the type of centre it is and the type of care it gives.

Relaxation would enable residents to bring their prescribed medication in blister packs prepared by their own pharmacy, rather than having to get an in-house doctor and pharmacist to deal with it, which makes the experience complicated and may not be altogether necessary. Basically, if a person is coming for respite care, he or she is coming with medication from his or her doctor, but the ruling is that when people come into a respite centre they must use an in-house doctor. A person could have drugs from Monday to Thursday that are prescribed by a doctor externally but when the person comes into a respite centre that is being duplicated, at a cost. I am asking for that to be relaxed and for the drugs that are prescribed by external doctors to be allowed come into the centre.

I welcome this motion from the Independent Group. It gives us the opportunity to debate what is a very important issue for many people who have ill loved ones in their homes.

I do not believe the Government or the HSE puts any value on respite services. Respite helps families to keep ill loved ones in their homes for many years, if their loved ones can get a couple of weeks of respite during the year in their local community hospitals. Sadly, this was not available during the Covid-19 pandemic for many people as the service was discontinued or scaled down. I did not agree with this as it put severe pressure on families who were already struggling. It had the opposite effect as it meant that the elderly people had to give up caring for their loved ones at home and the ill person ended up in long-term care.

Local GPs in west Cork were asking me to help get respite care for patients in certain hospitals and in nursing homes in west Cork over the past two years and even up to now. In many of the main hospitals in west Cork, it was extremely limited. Respite for children and adults with disabilities is deplorable. Parents are not getting any breaks. Respite care is not the only crisis we have in west Cork, as long-term residential places for adolescents and adults are almost impossible to access. CoAction West Cork has closed five respite houses in Castletownbere due to staffing and pay parity issues. This Government turns a blind eye to that. When the Minister of State, Deputy Butler, who legged it out of the Dáil just before we spoke, decided to carry out a hush-hush Fianna Fáil nod-and-wink visit to west Cork as a Minister of State of this country, I wish she had contacted me so we could have visited the people who are really affected by these closures in Castletownbere and met the families who have very ill loved ones at home and cannot get respite care in hospitals in west Cork. Then she would have had the real picture of what is happening in the real world.

I thank the Independent Group for bringing this important motion forward. Respite provision is important to allow caregivers to obtain a break. These caregivers are saving the State millions of euro every month. Despite this, the Government continues to treat them in a cold and derogatory manner. All these caregivers are being taken for granted by the State. Many of my constituents who are caregivers have been keen to stress to me that while they face many pressing issues, it is respite provision that is the most pressing. They feel betrayed, and are very annoyed with this Government for not addressing this issue.

I also fully support the CEO of Family Carers Ireland who has spoken of the need to increase the carer's allowance to €325 per week in budget 2023. This would be only right and proper because the care that is given to people in their homes is very important. It is saving the State millions of euro. Everybody knows that if an older or vulnerable person can be kept in his or her own home, it is the right place and safe place for that person to be. It is what we want, and I support that fully and I always will. I thank the carers in County Kerry who are doing such good work in keeping people at home.

I, too, thank the Independent Group for bringing this very important motion before us today. I hope the Government will assist in doing something about the position of carers. It is very important for carers to get some respite so they can keep the family member in the home for as long as possible. I know an old gentleman, and he is a gentleman, of 86 years of age who is trying to care for his son who is 46 years old alone. He has been sanctioned for respite care since January but still has not received it. This man is on his knees; he needs home help himself.

On the issue of home help, people in Kerry and especially in the Killarney and Castleisland areas are waiting for home help for elderly people to try to keep them in their homes for longer. The HSE says it is having trouble recruiting staff, yet I know staff who are trained but who still will not be hired. They have gone away and taken other jobs after having being trained and doing the courses. What is wrong with the Minister? Why is this happening? It is so important to allow people to stay in their homes for as long as possible, but they are not being assisted. The hospitals are crammed and the emergency departments are clogged up. They have nowhere to go. There should be a small bit of assistance. If more home help and carers were provided, it would give people a chance and they would stay in their homes for longer, which would save the Government millions of euro. However, the Government has no notion at all about millions other than to fire them out wherever it wants, but it will not give them to our own people who really need it.

I thank all the Deputies for their contributions to this debate. On behalf of my colleagues, the Minister, Deputy Stephen Donnelly, and the Ministers of State, Deputies Rabbitte and Butler, I assure Members that this Government is acutely aware of the importance of respite care for service users and their families and remains firmly committed to ensuring increased capacity is built into respite services provided by or on behalf of the HSE.

The Government is committed to providing services and supports for people with disabilities, which will empower them to live their lives and provide greater independence in accessing the services they choose. In addition, overarching Government policy is to support older people to live in dignity and independence in their own homes and communities for as long as possible.

The Government recognises the important role that family carers play in the provision of care in Ireland. I would like to restate what my colleague, the Minister of State, Deputy Butler, said about family carers and how they are the backbone of care provision in our country and have cared for the most vulnerable in society during the Covid-19 pandemic. The need for increased respite provision for persons with a disability and older persons is acknowledged by the Government and is reflected in the HSE's national service plans for 2021 and 2022.

The Government's commitment to improving services and supports for people with disabilities and their families, was demonstrated in budget 2022, with a total budgetary allocation of more than €2.3 billion, which included funding to reflect the importance of respite breaks as part of the overall suite of services available for people with disabilities and their families. Building on the 2020 funding for respite services of circa €70 million, in 2021, funding of €5 million was provided for nine additional centre-based respite services, to provide 10,400 additional respite nights along with a range of alternative respite projects including Saturday clubs, breakaway schemes and summer schemes. The number of overnights, with or without day respite, accessed by people with disabilities in 2021 is advised as 94,606. The number of day-only respite sessions accessed by people with disabilities in 2021 is advised as 16,306.

Budget 2022 provides €9 million to build the capacity of our respite services with the Government committed to the establishment of three additional specialist centre-based services - one to provide specialist care for people with Prader-Willi syndrome and the other two to provide high-support respite for children and young adults with complex support needs. These centres are expected to provide 4,032 nights to 90 children and young adults with complex support needs. In addition, funding for further respite services is provided for in budget 2022, which will provide 9,408 nights to 245 children and adults in a full year.

The Government also provided an unprecedented level of investment in the 2021 budget to improve access to primary care services and older people's services, including €150 million of additional funding for home support to progress the development of a reformed model of service delivery to underpin the statutory scheme for the financing and regulation of home-support services. This funding has been maintained into 2022, providing for 5 million more hours of home support. The overarching policy of the Government is to support older people to live in dignity and independence in their own homes and communities for as long as possible. Where this is not possible, the HSE supports access to quality long-term residential care where this is appropriate.

Access to respite care is based on both the needs of the older person and their carer and can take place within their own home or in a residential care unit managed by the HSE, voluntary agencies or by private providers. Respite 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. Respite is not always centre-based and can be provided in a number of ways, for example, centre-based, in home; home to home, family support, etc. As a vital part of the continuum of services for families, respite potentially helps prevent out-of-home full-time residential placements, preserves the family unit, and supports family stability. However, the provision of residential respite services has come under increasing pressure in the recent years due to a number of impacting factors, including: 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; an increase in the age of people with a disability resulting in people presenting with changing needs; and the impacts of regulatory standards and national policy on capacity.

As was set out by the Minister of State, Deputy Butler, the Covid-19 pandemic has resulted in the closure of some residential disability services in line with public health advice. I do acknowledge that this has been difficult for many people with disabilities and their families. Respite services operated at reduced capacity throughout the pandemic. This was as a direct impact of prevailing public health advice at that time, to keep some of our most vulnerable safe during the pandemic. During this time, some respite centres remained open, while others were temporarily repurposed as isolation facilities. The use of targeted one-to-one home support hours were offered in lieu of respite in certain circumstances, subject to appropriate risk assessment. Throughout the pandemic, staff and resources associated with closed or curtailed services were redeployed where possible to support residential provision and to provide for targeted in-home, community and online supports for service users and families based on prioritised needs. For those with disabilities and their families and for older persons, the impact of the pandemic on those services has presented challenges and the human cost for those affected by the reduction in respite services as a result of Covid-19 cannot be underestimated.

The Disability Capacity Review to 2032 - A Review of Disability Social Care Demand and Capacity Requirements to 2032, published in July 2021, set out the additional respite capacity that will be required in light of Ireland's anticipated demographic change, and what is required to address unmet need. Following the commitment in the 2020 programme for Government to work towards implementing the findings, a disability action plan framework was also published in July 2021 alongside the terms of reference for an interdepartmental working group to develop this action plan, for submission to the Cabinet sub-committee on social affairs and equality. The action plan, which is in the process of being finalised, will help to guide the Government to ensure that we can plan ahead to meet changing needs and demographics and ensure that people with disabilities can get the right services, in the right place, at the right time. It is also intended to work towards providing equitable access to respite services irrespective of where people reside. While challenges remain, the need for increased respite provision is acknowledged and reflected in the HSE's national service plan for 2022.

It is important to note that the programme for Government aims to prioritise policy actions that protect the most vulnerable, including those both in caring roles and those they care for, as our economy returns to growth in the aftermath of the pandemic. The Department of Health is committed to working with other Departments to ensure that we are providing the most appropriate supports to sustain carers in their caring role. Officials from the Department of Health recently partook in the annual carers forum hosted by the Department of Social Protection. This annual forum is there to allow family carers and representative organisations to voice their views on caring in Ireland and their priorities to support them in their caring role. The national carers strategy aims to recognise and respect family carers as key care partners where carers are supported to maintain their own health and well-being and to care with confidence.

I assure the House that the Government is as determined as ever to provide timely access to high-quality health and social care services, including respite services for all children and adults who require them. As Ministers of State with responsibility for disability and mental health and older people, Deputies Rabbitte and Butler, are acutely aware of the respite service for service users and their families. Respite remains a key priority. This is reflected in the funding commitment achieved for the development of new respite centres, alternative respite and the expansion of existing services.

I thank Deputy Connolly for her comprehensive and eminently reasonable motion on the provision of adequate respite care services.

This motion lays bare the cruel situation in which many family carers find themselves and asks that an adequate and sustainable service is put in place. It also very reasonably asks that all respite beds closed as a result of Covid be reinstated. This is what we call living with Covid. It is completely unacceptable that this has not happened.

Unless someone is a carer and has responsibility 24-7, or even part-time, and unless it is an individual's day-to-day reality, most of us cannot comprehend the beyond urgent need for respite services. These services allow family carers to have a weekend off and a family to be an ordinary family, where they can sit down for a few hours undisturbed, watch television, go to a football match or go to the cinema. Carers are suffering burnout. Family life is partly or completely disrupted and lives are put on hold.

The shortage of respite services means we are firefighting. What is happening is the most urgent case takes precedence over the extremely urgent, which takes precedence over the very urgent. The Minister of State and I are well aware of a situation in south Leitrim where there are no respite beds. I know of a family that had eight days respite per month for a young person with very special needs. Overnight, they were told it was gone because a more urgent case had come on board. It was simply gone. I know the Minister of State, Deputy Rabbitte, is doing her best with it and, fair dues, she came to Carrick, but the question is why did this happen in the first place? People are still waiting and asking why it is taking so long.

I will raise a final point regarding a major problem in the care services. The Minister of State and I know carers travel from one home to another for a half-hour here and a half-hour there. It could be 10 km or 15 km one way or the other but they get no payment for travel. At the best of times, that is unacceptable but with the major increase in the cost of petrol and diesel, how are carers supposed to travel at their own expense when they are paid approximately €12 or €13 an hour? I have been contacted by carers who are thinking of giving up work because it costs them so much money - not to go to work or to go home, but to work. The acute shortage of carers will lead to a collapse of the system.

I ask the Minister of State to act on two things: travel costs paid to carers and the delivery of an adequate respite service for family carers.

I thank all the Members for their very helpful and supportive contributions. I was more hopeful at the beginning than at the end of the Minister of State's contribution. The tabling of this motion was an attempt to put a spotlight on the situation relating to respite, the dreadful situation on the ground and the inconsistency from county to county. Deputy Sherlock talked about recruitment issues. I agree with him but there is a bigger and more fundamental problem, which is there is no recognition of the essential nature of the service provided by respite. It is simply not there. Some 3% of the budget goes to it.

I will be parochial and mention Galway in order to illustrate the point. I am receiving texts on an ongoing basis regarding somebody in Galway. I will not go into the details. There are no respite services at Merlin Park University Hospital for the family in question. This is a hospital that sits on 150 acres, where there is lots of space and many buildings, but has only six respite beds for a city the size of Galway. I have just been informed that Carrowroe has no respite beds, which I knew, but it will have no respite beds in the future because of some plan to move them all into Merlin Park. We are talking about a huge county and we are also talking about the Irish language.

I tabled this motion to try to put a spotlight on this matter. I thank all the Deputies for their support for it. In putting that spotlight on it, let me just compare the lovely words with which the Minister of State concluded his speech with the reality on the ground. All respite was cancelled - we have all acknowledged that - in March 2020 due to the pandemic. In a reply to a question relating to Galway, it was stated that infection prevention control requirements meant that respite could not continue to be provided in some units post pandemic; we do not know how many. Waiting lists were not maintained so we do not know who is waiting. We were then told respite is prioritised based on need and date of application from the clinical practitioner since the beginning of 2022. There are no waiting lists now because they were cancelled. There are six beds in Merlin Park so, no matter what a clinician says, no respite beds are available.

If we look at that in the context of an answer I got in October 2021, the breakdown of the waiting lists for three agencies in Galway indicated 94 adults were waiting more than four years for respite, 36 were waiting two to three years and 31 were waiting 18 to 24 months. Between another two agencies, 19 children were waiting more than four years for respite, 11 were waiting two to three years and six were waiting 12 to 18 months. I made a decision earlier not to go into the minutiae. I am ending up doing so because of the overall spin that comes out from the Department, and through Ministers, regarding what is happening on the ground. We have a serious difficulty with the absence of respite beds and an equally serious difficulty with the spin around that.

I do not mean to be parochial in any way even though I am using Galway as an example. This motion requests an audit for the whole country. The Minister of State gave us figures of thousands of hours provided in respite services. This means nothing to the person who cannot get respite in Galway for one week in July, notwithstanding he or she is caring 24 hours around the clock. I do not expect the Minister of State to answer me in the Chamber. I ask him to at least recognise why this motion was necessary. It asks for one basic thing: an audit to be urgently carried out to find out what services are available to see whether they are meeting the need, not to mention the unmet need that has been clearly set out.

The capacity review I referred to, along with the 2018 health service capacity review, stated it was unsustainable for hospitals to go on the way they were and that we needed community care. That is what Sláintecare states. Respite is one tiny part of that. Yet, I read out information regarding horrific waiting lists in Galway city, and Merlin Park having six beds with a promise of 13 some time in August or July, depending on staff and the person who is addressing it. I accept the Government is not opposing my motion and that the Minister of State, Deputy Butler, said she was very open to doing an audit relating to her area. She was also going to speak to the Minister and the Minister of State, Deputy Rabbitte, about the overall audit. An audit is the most basic ingredient before we can have a planned service. It is also a step towards honesty and recognising that we are not providing respite care.

I also requested as part of the motion that we look at rented buildings because it is money going astray. This has been repeated not just by me but the agencies and service providers in Galway that are spending millions on rent to provide respite, among other services, with no security of tenure. It is a complete waste of money that is due to the Government's approach to capital projects as opposed to revenue and rental projects.

We need a date for the optional protocol. I realise that certain ingredients have to be put into the mix and that we are working on those. However, we need a date for the signing of the optional protocol, if we are seriously committed to planning for and giving services on a human rights basis.

Question put and agreed to.
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