Dáil Éireann debate -
Tuesday, 18 Jun 2024

Vol. 1055 No. 6

Carers: Motion [Private Members]

Deputy Pauline Tully

I move:

That Dáil Éireann:

notes that Family Carers Ireland's report entitled "The State of Caring 2024" found:

— almost three quarters of carers have never received respite;

— half of carers have to pay privately for services that should be publicly provided to support their caring role; and

— the vast majority of carers are finding it difficult to make ends meet;

calls on the Government to heed the voice of carers, thousands of whom told Deputies their stories and outlined the extreme pressure they are under on the doorsteps over the past month; and

demands the Government take real action in response, including committing to a minimum respite guarantee and a significant relaxation of the carers allowance means-test so that more carers are supported and payments for all are increased.

I will be referencing a Family Carers Ireland report published last week, called The State of Caring 2024, which shows deeply entrenched issues faced by family carers. This is a biannual report. It was done in 2022 and the same issues are identified again, except they are exacerbated for a number of reasons. Family carers have long been held up as the backbone of care provision in Ireland. We have various departmental strategies referring to the important role they play in our society. However, this report declares, "The policy landscape ... remains a patchwork of intentions and initiatives that have yet to coalesce into a coherent strategy capable of addressing the needs of carers and those they support." Economic fluctuations and cost-of-living increases are all exacerbating and placing extra burdens on carers. Many already face financial strain due to the issue of caregiving. There are also immeasurable costs experienced by family carers, such as the impact on their physical and mental health, and loss of income caused by the inability to work outside the home because of their caring duties. There is the potential for a life of debt and the constant stress of having to fight for all of the support services and so forth. Carers are in many cases receiving a carer's allowance, but it falls well below the established minimum essential standard of living. Currently many carers are not eligible for the payment due to means-testing and the allowed limits of 18.5 hours per week in paid work, voluntary work or training and education. There is a need to reform the carer's allowance. We need to look at the rates and ensure they are adequate, both for the carer's allowance and the carer's benefit. In our alternative budget 2024, we proposed that it should be increased by at least €15 per week as part of a vision to incrementally bring social welfare rates in line with the MESL over time. We also want to increase the income threshold in the means test for carer's allowance, which will result in higher payments for current recipients on reduced payments. It will also mean that more people will be eligible for the allowance. I received costings from the Parliamentary Budget Office on the removal of the means test. I worked with Family Carers Ireland on this. It came in at just below an additional €400 million per year. On a similar motion in April, the Minister stated €600 million in costings were coming in from the Department. I asked the Minister of State, Deputy Higgins, if she would share those costings with us and she said she would. We unfortunately have not received them to date, and neither has Family Carers Ireland. I would be interested to get those costings from the Department on removing the means test to compare and see where the discrepancy is between just below €400 million and €600 million.

The housing crisis is also compounding the issue for carers. The report speaks of the double-edged sword of caregiving duties and the struggle for secure and suitable housing. We have skyrocketing rents and on top of everything else, many people are worried about where they are going to get suitable and affordable housing for themselves and the person they are caring for. We know many people will have, or will develop through accident or illness, mobility issues and may need to adapt their home. The housing adaptation grant has not increased in more than a decade. We know the cost of construction has increased of late, yet the grant has not. It is totally inadequate and ineffective. In Sinn Féin's budget 2024, we proposed doubling the funding for the housing adaptation grant. That came in at a cost of €25 million. It is something I urge the Government to look at for this year's budget. Support services are severely lacking, and respite in particular. Of the respondents in the report, 74% of the carers reported that the individuals they support did not receive any form of support and 72% have never received respite. That is shocking and is something that has to be addressed. Some will try to pay for these services privately but not everybody is able to do that and it puts a financial strain on them. We are looking for a commitment to a minimum respite guarantee in order that carers will receive up to 20 nights per year in respite. We need a respite register to identify who requires respite and what form of respite they require - because it can vary - so it can be addressed. Carers deserve better and their voices must be heard. This report exactly outlines the issues affecting carers at the moment.

Deputy Donnchadh Ó Laoghaire

Family carers are the backbone of care provision in Ireland. That has long been recognised in sentiment and it is now time it was recognised in substance. They play one of the most important roles in our society. They care for their loved ones, their families and friends, out of a sense of love, duty and responsibility. They are not looking for any applause. However, being a carer in this State is extremely challenging. Being a carer and having to fight and struggle for every bit of support takes a huge toll on a carer. It takes a toll on a carer's physical and mental health. There can be challenges for carers with the loss of income caused by the inability to work outside the home for more than 18.5 hours because of caring duties. Some of those ironically would work as carers outside the home had they more scope to do so. There is the potential for a life of financial hardship, social isolation, strain on relationships and the constant stress and worry of always having to fight due to the insufficient provision of services and supports to which a person being cared for is entitled. In spite of this, carers frequently tell me that they find caring for a loved one to be extremely rewarding. This is a testament to their character, their sense of responsibility to their loved ones and their sheer selflessness. Nobody is a carer because it is easy. Nobody is a carer because it is comfortable. Nobody is a carer for the sake of a quiet life. However, we would be foolish to take them for granted. Many of these people would do it for nothing, but according to research by Family Carers Ireland their contribution is estimated to save the State approximately €20 billion per annum. That research also found that family carers are lonelier, more isolated and in poorer health than the average person in Ireland. They have to be supported but we instead see the opposite from Government. We see carers voices, in many instances, being ignored.

Three in four family carers surveyed said the people they support do not receive sufficient formal support and 72% have never received respite. That is three in every four carers who never get a break. I have met people on the canvass recently who have been waiting years for respite, and it is brutal. Half of carers are prepared to pay privately for products and services that should have been publicly provided to support the caring role. Some 69% find it difficult to make ends meet, with 29% of those struggling financially and cutting back on essentials such as food and heat. Some 34% said their accommodation was not suitable to meet the needs of the person they care for, 23% missed a mortgage or rent payment over the past year and 17% of mortgage holders. This is shocking. This is how our Government treats our carers. Carers deserve better. Their voices must be heard. We would do well to look at other societies. We are fortunate in Ireland that we have so many family carers. In other countries where this process is more advanced, and where family carers were perhaps taken for granted in the past, the social care crisis is severe. People are crying out for support but the Government is not listening. We urge it to support Sinn Féin's plan to deliver a respite guarantee and increase payments for carers to ensure they are adequately supported. Carers must be respected and listened to. It is clear from the findings of the report by Family Carers Ireland that they do not feel supported.

In this motion we are calling for a commitment from Government for a minimum respite guarantee and a significant relaxation of the carer's allowance means test. I echo the point made by Deputy Tully relating to the sharing of that information. That is a matter the Minister, Deputy Humphreys, said she is reviewing. It is an issue of public debate. If there is information on the costing that the Department has then it should be shared, because it is important we have full light on that. The current rules around carer's allowance are too rigid. Many carers are not eligible for the payment due to means-testing. The maximum limit of 18.5 hours is also a problem. That is an enormous worry for carers. They are restricted in increasing their household incomes in any way. That is why 69% of carers find it difficult to make ends meet and one third of those are struggling financially and cutting back on essentials. It is not good enough that many carers are receiving payments that fall well below an established minimum essential standard of living. The income inadequacy imposed by existing social welfare payments must be addressed. We called for the rate of carer's allowance and benefit to be increased by €15 in budget 2024, and to incrementally bring social welfare rates in line with the MESL. I urge the Government to support Sinn Féin's motion and ensure that carers are respected. At the moment carers have no capacity to increase their income and are faced with a growing cost-of-living crisis and an isolation and loneliness crisis. I urge the Government to support the motion and that carers are fully supported in caring for their loved ones.

Deputy Darren O'Rourke

If we are to judge a government by how it treats its most vulnerable, and in turn those who care for the most vulnerable, then how can we judge this Government?

For far too long, the voices of family carers have been completely overlooked and ignored. Day in, day out, including on the doors before the recent local and EU elections, they tell us how they feel pushed aside and abandoned by the Government. They tell us they are burdened by enormous strain and pressure, with little or no hope for respite or relief.

These experiences are borne out in the report entitled The State of Caring, which paints a bleak reality. It is a damning indictment of this Government's record and, indeed, the records of successive Governments. The report echoes the persistent struggle highlighted by so many. Families and carers are pushed to the brink. One issue the report consistently highlights is the lack of respite. Despite it being absolutely essential, 72% of family carers surveyed had never received respite. In Meath, we have a chronic shortage of respite services. At least 200 families are on a waiting list. The system is at breaking point and it is grossly unfair. This is an issue I have raised consistently with the Minister. While it was confirmed last June that increased funding had been made available to secure additional respite capacity in the county, no capital funding was made available. The State continues to outsource its responsibility. Third-party providers find it difficult to find buildings and even harder to find staff. The money, €1.6 million, is very welcome, but money itself is not enough. It must be translated into services but this is just not happening. Funding is allocated and is welcome but 12 months later, there are no additional respite services in County Meath. That is what actually matters.

We must listen to the lived experiences of family carers. We must incorporate their knowledge into the solutions we put forward. I urge the House to support tonight's motion and Sinn Féin's plan to deliver urgent reform, including a respite guarantee and increased payments for all carers in order that they will be adequately supported.

Deputy Paul Donnelly

More than 299,000 people identified as unpaid carers in the 2022 census. People aged between 50 and 59 were the group most likely to be providing regular unpaid care. Access to care and the quality of care provided presents challenges for all societies. In Ireland, there was an expectation on women to shoulder unpaid care responsibilities. Today, there continues to be a heavy reliance on informal family care for older people and people with disabilities.

I have met many carers in my time as a family support worker, a councillor and a TD, and I am always in awe of the work they do and the commitment, love and care they give to the people they care for, whether they are family members or not. There are two components to the care system, namely, the provision of unpaid care work by family and sometimes friends and, second, paid jobs in the care sector. A factor that must be looked into here is the issue of pay and parity of conditions between community care workers, those employed privately and those employed by the HSE.

There are constant blockages and delays in getting any type of payments and supports. It is as though the system wants to wear down people and grind them down until they give up. Earlier this month, I was contacted by a very worried mother in respect of her domiciliary care allowance for her son, which was rejected in September 2023. She appealed this decision in October 2023 and has still not received a decision on her appeal. She has been told the authorities cannot give any indication as to when the decision will be made. She was previously given an estimated timeline of 17 weeks for a response to her appeal, but her appeal was lodged more than 32 weeks ago. Since then, she was told the case had only been assigned to an appeals officer on 19 April, six months after the appeal, and there has still been no movement. She needs access to services urgently but she cannot afford these because she is unable to work due to her son's care needs. Again, for assessments of need, there are horrendous waiting lists.

Another carer, whom I met on the doors when we were canvassing, had worked all her life. She left her job to care for her mother, saving the State a fortune. She was assessed for the carer's allowance and she got €18. Means-testing needs to be addressed. That sum is an absolute disgrace when someone has paid in for her entire working life. She said she had started work when she was 18 years of age, and she was getting €18 per week. She was having to travel from Blanchardstown all the way to Donaghmede, and it did not even cover the cost of her petrol for a couple of days. This needs to be addressed.

Deputy Réada Cronin

I thank Deputy Tully for the motion. I am glad to speak on it because I feel as though I am speaking for the army of invisible people who work 24-7, relying on the extremely modest carer's allowance, with many unable to make ends meet. They are kept under constant scrutiny by the State for that payment, a State that seems more intent on catching them out in some way than helping them, valuing them or relieving them of their caring duties with sufficient respite. It is hard to credit that three quarters of carers have never received respite at all. They must just carry on. Half of them pay privately for services that should be readily and publicly available.

In my constituency, Kildare North, I have had a long involvement with two outstanding carers, Aisling McNiffe, who fights day in, day out for her son Jack, and Lourdes Sanchez, who fights day in, day out for her son Conor. These women are exhausted, not only by the lack of services but by the frequently peevish way the State behaves towards all carers, quizzing them, testing them and begrudging them the slightest allowance or assistance, demanding endless form-filling while, at the same time, overseeing billions in overruns in public projects such as the national disgrace of the national children's hospital. Neither of those women's sons will ever see the inside of that completed hospital because they are adults. Aisling and Lourdes are not looking for the Earth. They are looking only to establish their sons' right as citizens from childhood to adulthood. The scrutiny and peevishness must cease. The actual care of our carers must start. Immediately, the means test must be relaxed to give them breathing space and living space.

I have also been dealing with a mother who has gone back to college to make a better life for herself and her child. Her caring has not stopped. Her daughter's needs have not stopped. She studies while her daughter is in school, with no change to her caring but she has been cut off. This narrow, mean thinking must change, because if we do not care for carers, who will, and who will care for the people they care for then?

Deputy Denise Mitchell

Tonight, we ask the Government to listen to the voices of carers, who are stretched beyond their means and have been left to their own devices by Minister after Minister. Carers throughout this State have to fight tooth and nail for services they should be entitled to. The State takes their work for granted and that is reflected in the lack of State assistance. In its most recent report, Family Carers Ireland found that 49% of carers were paying through the nose for private services they should have access to through the public system. As my colleagues said, 72% of those who took part in the report stated they had received no respite. A total of 34% said they did not have suitable accommodation for the needs of those they care for, while 69% of carers find it difficult to make ends meet. Time and again, carers' cries for assistance go unheard. This is a complete failure of the Government.

We are asking for carers to be treated with fairness. We are asking that they get the support they are entitled to. The Government needs to back this motion and begin to take real action that supports carers. The Minister of State can do just that by reviewing the carer's allowance means test and committing to at least minimal respite. These measures would go some way to easing the burden on carers, who are suffering tonight throughout this State.

Minister of State at the Department of Children, Equality, Disability, Integration and Youth (Deputy Anne Rabbitte)

I am very happy to be here to address some of the issues raised in the Private Members' motion on carers. Support for carers is a topic that is always on the agenda and it is, of course, an enormously important one that comprises so many different cross-departmental issues. It covers not just health and social care supports but also income supports and housing, as the Deputies clearly identified.

My colleague, the Minister of State, Deputy Colm Burke will later set out some of the policies, supports and initiatives provided to carers through other Departments and, therefore, I will take the opportunity in this contribution to focus some attention on my Department.

We are engaged in continuous efforts to expand and improve the provision of specialist disability services to people with disabilities and thereby also the supports given to their carers. Various surveys show that between 5.8% and 11% of the population identify as family carers. Three in five carers are female, and women make up the vast majority of those providing the most intensive levels of care.

Officials from my Department and from the Department of Health recently attended the annual carer’s forum, as they do every year. The event always provides a very useful and often emotional insight into the issues faced by carers who, as we should remember, are a diverse group. Some are caring for children with disabilities and others are caring for younger or older adults with a range of conditions.

We know that caring can be a rewarding, but also a very challenging, role particularly for higher-intensity caring. What all carers have in common is that they need assistance from time to time and in various ways to help them in the very important role that they fulfil. The access to respite is an issue that comes up every year at the carer’s forum and I am very aware that there is still a lot of unmet need in this area, which I am working hard to enable the HSE and its providers to meet.

Respite for those with, and caring for, people with specialist disability service needs has been a priority area for me since I took up this role as Minister of State for disability. Successive budgets have seen additional funding for respite and over the past couple of years in particular, a substantial number of new services have come onstream to provide not only much-needed additional respite beds but also a range of daytime activities. In 2014, funding for respite service provision totalled €53.5 million, while in 2024 it is in excess of €110 million. In terms of overnight respite, this has translated to provision increasing from 87,177 overnights accessed by people with a disability to 151,123 overnights last year, as well as 45,424 day only sessions. The total number of people in receipt of respite services in 2023 was 6,137. I fully intend to continue this expansion and I was able to attain additional new development funding of €15 million for specialist disability respite services through budget 2024, increasing to €25 million in a full year. This will ensure that provision continues to expand significantly across the country. With this increased funding my Department, in tandem with the HSE, is working with me to support different forms of respite - overnights, day provision, after-school clubs and weekend activities. Particular attention is being focused on areas that are below the national average regarding the availability of respite. There will be further detail provided in the respite investment plan, which I hope to publish in the coming weeks.

I acknowledge that demographic challenges associated with the increase in the number of people living with a disability, the increase in age and life expectancy, and the changing needs of people with a disability have all led to the need for increased respite services and we are working hard to step up provision on a continuous basis. The co-ordinated focus will be on expanding existing overnight capacity as well as providing significant additional investment in alternative forms of respite to meet the different needs. Every effort is being made to incrementally move to support the provision of respite on a more equitable basis and to expand provision in all forms of respite. Respite will continue to be a priority for me and this Government.

Respite is one important area of support for people with disabilities and their carers but there are many more, including personal assistance and home support services as well as timely access to therapies and assessment. An unprecedented €2.9 billion is being provided in 2024 for specialist disability services. The recently published disability action plan sets out our ambition for reform and expansion of disability services, and together with the roadmap for children’s services it provides the blueprint for service improvement over the next few years.

I thank Sinn Féin for tabling this motion on carers and providing an important forum for debate on these issues. I look forward to further contributions.

Deputy Johnny Mythen

I thank my colleagues, Deputies Tully and Patricia Ryan, for their dedicated advocacy on behalf of carers and the elderly and for tabling this motion. It is universally accepted that people with disabilities and their carers are more financially vulnerable than any other section of society. In fact, the Joint Committee on Gender Equality recommended bringing social protection rates for carers in line with the minimum essential standard of living, MESL. It is critical that the Government understands, and what is more reflects this, in the upcoming budget. Two out of every three carers experience financial distress:16% are in arrears with their utility bills and 23% are in trouble with their rent or mortgage repayments, yet the Government fails to recognise their many challenges and the personal sacrifices these carers selflessly make every day, often without proper public services such as transport and respite.

This is also taking into account the rapid rise of the cost of living, including medicines and medical supplies. What is not considered is that if these carers were to stop doing what they are doing this minute, it would cost the State more than €20 billion per year to replace them, yet the income disregard for the carer's allowance has increased just once, by 14%, in 15 years. We are calling directly for the carer's allowance to be increased, the means test to be immediately reviewed and an increase in the income threshold.

The system is more than 33 years old and requires a significant sea change is required to the current, archaic system. The Joint Committee on Gender Equality recommended that a participation income be established for carers. Perhaps the Minister of State will commit to doing this during her closing remarks.

The Government ratified the United Nations Convention on the Rights of Persons with Disabilities in 2018. However, six years later it has failed to do anything, as was promised and committed to in the programme for Government. The question remains: when will this be done?

Deputy Johnny Guirke

This is not the first time I have raised the issue of home care hours being approved but not provided. In a lot of cases not enough hours are provided to clients. One lady in my constituency currently going through cancer was approved home care support months ago but she has yet to receive that care. Care availability remains an issue. It has been highlighted for years but not dealt with. There is a lack of staff who want to take up the role of a caregiver due to the poor pay and the poor travel expenses in between calls is a factor that turns care givers away from taking up the role with private companies. In some cases where caregivers work weekends, they do up to 15 calls in one day while running and racing between calls. If they ring in sick, cover becomes impossible to get.

What is the point of approving home care support if there is nobody there to do it? It is totally unacceptable that home care hours that have been approved are not being fulfilled and an intervention form the Government is needed to ensure that home care providers can offer fair pay and travel expenses that will act as an incentive people who want to take up the role as a caregiver. The Government also needs to ensure that if companies are receiving increases, the increases staff receive should be monitored to ensure they are being paid fairly for the work they do and are retained by these services.

It appears the Government is driving people into nursing homes and see older people and people with disabilities as a burden on the State. This should not be the case. Hospitals are overcrowded and as caregivers cannot be found by providers, many people with approved home care hours cannot be discharged from these hospitals. The Government needs to listen to the caregivers, take note of what they are saying and support them. Home carers, who are providing care for family or friends, have been easing the pressure on home care providers and on the State, yet half of these home carers have to pay privately for services that should be publicly provided to support their caring role. We need a relaxation of the carer's allowance means test. These people are saving the State a fortune by caring for their loved ones and keeping them at home.

Deputy Dessie Ellis

There has been a very obvious increase in the number of cases coming in to my constituency office that concern issues around carers. In particular, more people are coming looking for help in getting the carer's allowance or the domiciliary care allowance. Most applications fail because of the strict adherence to section 179(4) of the carers Act. While it is important to have a set of criteria as a guiding principle for those applying for carer's allowance, it is clear from cases my office deals with that there are many who do not rigidly meet the criteria but there are cases in which common sense and discretion should prevail.

Unfortunately, when deciding officers deny an application, they usually say they are restricted by legislation and quote section 179(4). Basically, even if they see a worthy case, their hands are tied by this legislation and it leaves them with no room for manoeuvre. We also find many carers are not eligible for the payment because of a restriction in the number of hours they can work per week and because this payment is means-tested. We have found that many who fall marginally outside the limits allowed by the means test fail to qualify for the allowance.

The reality is that carers could not be paid enough for the work they do and the money they save the State by providing care in the home for their loved ones. Family members take on an incredible undertaking in caring for someone with a severe disability or serious illness. These people are not professionals but untrained family members who take on difficult tasks to give their loved ones a better quality of life and to ensure they receive a level of care and attention they would not necessarily receive in a State facility. We should not be making it difficult for these people. Many are surviving on low incomes that are well below the average standard of living. We need more flexibility in how the legislation is interpreted and we need to give deciding officers greater discretion when deciding on cases. There also needs to be an increase in the income threshold in the means test for carer's allowance.

Deputy Thomas Gould

Last Saturday, I buried my aunt Jenny O'Leary. Jenny McCarthy was her maiden name. She had been sick for 12 years and her daughter Linda cared for her. Jenny had a lot of issues but she always wanted to stay at home. Even up to two years ago before she stopped communicating, her daughter kept her at home. Linda had to fight for everything from home help hours to increased home help hours to weekends. Here was a daughter doing everything for her mother that her mother wished for but this State did not support her along the way. I witnessed the love that Linda, the grandchildren and the rest of the family showed her. This is just an example of the love other carers show. This is done for love not for money. They do it because they love their family members and they want to look after them.

The wife of a very good friend of mine named Jamesy had a number of massive strokes last year. Jamesy was self-employed and had his own small business. He had to give it up to look after this wife, the woman he loved. He had to fight. My office had to fight to get him a payment. He used up a lot of his savings because he could not get a payment. This is a man who had worked all his life. I played hurling with and against him. He is a great man who had to go home and look after his wife and when he needed help, the State was not there to help him.

Funding for respite services in Cork was cut by 50% in 2023. A lady I am dealing with at the moment has to fight for everything. She drives her two children, both of whom have special needs, to school because they attend different schools. She cannot get school transport or therapies. She cannot get anything. The woman is at her wits' end. I was on the phone to her last week. She said to me "Tommy, who's going to look after us? Who's going to look after my children?" That is what she is asking and that is what we are asking here tonight.

The Minister of State said that 6,137 families accessed respite care in 2023. That figure must be a tiny proportion of those who need it because I know a woman who brought her child to a hospital and left the child there because she could not get respite and she thought she was going to have a nervous breakdown because nobody was there to support her. Can the Minister of State imagine bringing her child to a hospital and leaving her child there because she could not get respite from the State? I know a family that had to go to the US last year. I raised this case with the Minister of State last year. All they wanted was two weeks off to go to the US so they could attend their brother's wedding but they could not get it.

Deputy Holly Cairns

I thank Sinn Féin for tabling the motion. It is always welcome to speak on the issues facing carers but particularly so given the report released by Family Carers Ireland last week. The findings of the report are shameful. It is another report about the disgraceful lack of support for carers and those for whom they care and another reminder that life is harder, more stressful and more expensive for carers. Carers are struggling financially, the stress is impacting on their mental and physical well-being and the State is not providing critical support services. All of these issues are entrenched. They have been present for years and they intensified during the pandemic.

We will not improve the lives of carers without real systemic change. They will not be solved by tinkering around the edges and moving the means test threshold up a few euros. The means test needs to go in its entirety but that is only one facet of the struggles facing carers. A total of 69% of carers report that they find it difficult to make ends meet with nearly a third cutting back on essentials like food and heat and nearly a quarter missing at least one mortgage or rent payment over the past year. That figure rises to 35% when it comes specifically to carers who are renting privately or from the council. The housing crisis affects every person in the State and we can see how it exacerbates other problems we face across society. Carers are facing pressure from all sides with the lack of financial or practical support from the State for their caring duties and cost-of-living pressures, all of which are on top of a lack of affordable, appropriate and secure housing.

Support for carers is not just a matter of money. It needs to be an holistic approach that provides respite, housing support and mental health supports. Nearly 50% of carers are experiencing severe loneliness. This is blatantly down to the demands of caregiving, which severely limit social opportunities. That level of isolation compounds the stress and anxiety experienced by so many carers. We need targeted supports and interventions to address the crisis of loneliness among carers, ensuring they have the time and the finances to be able to engage with their communities and to help build social networks they can depend on.

Respite services constitute an essential aspect of that. A total of 72% of carers have never received a single moment of respite care rising from 65% in 2020. This is an issue I have been highlighting for years and despite countless promises from Government, availability of respite services is scarcer than ever. Research has consistently shown that respite improves the well-being of individuals and their carers. Respite is about giving everyone a break and giving the individual and family some space. This allows everybody a chance to rest and to recharge. We all know the incredible stresses faced by the families with either children or adults with disabilities. Nobody can live under that pressure without it affecting his or her mental and physical health. Families and carers need respite.

Respite is an opportunity for disabled people to increase their independence, socialise with other people and experience new and different activities. Reports to the National Disability Authority based on participation by people with disabilities showed high levels of satisfaction with many aspects of respite services, especially the chance to get some time for themselves and to engage in interesting and meaningful activities. The participants noted that respite gave their carers a break, particularly their mothers.

Respite is an essential service. This has to be recognised by the Government. There is a pressing need for a drastic increase in respite capacity. Respite is an essential part of disability services, yet it is very clear that there are very few respite beds and community services. Talking to families, one of the issues they often bring up is the lack of respite services for children and adults with disabilities.

Unfortunately, this is symbolic of the larger state of disability services in Ireland. There is a severe lack of respite capacity and staff shortages, inconsistencies in services and poor communication with disabled people and their families. Once again, the State is failing in its responsibilities and leaving overstretched and exhausted families without basic services. There has also been a gradual increase in the number of agency staff in this area. This is only a stopgap measure and fails to address the much larger systemic issue of staff in disability services.

Respite needs to be treated as a vital service for disabled people and their families. Until the Government appreciates its importance and many benefits, thousands of families will continue to be denied it. Figures released to me in response to a parliamentary question show that there are currently only 46 public respite beds in Cork, down from 73 in 2018. Access to respite has still not recovered from the pandemic and the closure of community nursing units. Respite services are incredibly important, but are also symptomatic of larger issues around disability services. They do not seem to be a priority.

These people are being failed every day and there does not seem to be any sign that is going to change. We have heard promises over and over again and we hear the Government talking about how much it values carers, but where is the evidence? The claim that the Government values and supports carers does not stack up, given the reality experienced every day by people who are caregiving. If we compare the Government rhetoric to the reality in the Family Carers Ireland report, there is a stark difference.

There are daily financial struggles, anger at the lack of services, constant anxiety about the absence of supports and dread about what will happen to their loved ones when a carer is no longer around. The problem is not even that there is no support out there, although that is increasingly the case for many families; rather, it is that the State often seems to erect barriers to deny people what little support does exist. Qualifying criteria for supports are almost impossible to meet. There are time consuming and complicated applications and people do not have the time or energy to fill them out. There is an attitude of complete apathy from State institutions that chips away at people's morale and sense of self-belief.

There are more than 299,000 unpaid carers in Ireland. That figure has grown by 53% in just six years. Every one of those carers provides an invaluable service to the State, but the State does incredibly little to support them. Too often, it does the complete opposite and makes life actively more difficult and expensive for them. Carers need to be supported. The State needs to provide targeted mental health supports for carers, provide increased support for housing adaptations, deliver more accessible social and affordable homes, get rid of the carer's means test, extend access to the fuel allowance, provide more respite beds and guarantee 20 days respite a year for carers. It is past time that the State introduced these measures to improve not just the lives of carers, but also the lives of those for whom they are caring.

Deputy Gino Kenny

I thank Sinn Féin for tabling the motion. We can never speak enough about care work and carers in this country. We can all agree that, in a very crude form, carers save the State hundreds of millions of euro per year. We cannot put a price on the care work they do for loved ones and friends.

The discrepancies in care pointed out by Family Carers Ireland are quite shocking. The report is called the State of Caring, but the state of caring is arbitrary and can be very hit-and-miss in terms of respite care, which I will discuss. The survey points out the many things that carers have to endure, in particular financially. They have a reduced income. Many people have referred to the means test for family carers. It is mean that the payment is means-tested. People providing full-time care should not have their income means-tested. Not having such a test would create less of a worry for somebody in that situation.

The survey also refers to care that has to be paid for privately, which is a substantial cost. There are obviously issues with private care, including personal items and items for a house. All of this is a cost, which is not supported by the State. There are also issues around accommodation. Other people have referred to adaptation grants. The application process for adaptation grants in most local authorities takes forever. There must be a more streamlined process in terms of accommodation and making the homes where people are cared for livable.

On the substantive point, namely respite care, it is quite shocking that 75% of people who provide care will have no access whatsoever to respite care. That is unforgivable. People who are providing full-time care do not get any respite at all, which leads to physical and mental stress for them and those they care for. That is difficult. Having no break can have a detrimental effect on caregiving. Respite care is very arbitrary. It is a postcode lottery, where people cannot get particular care.

During the local election campaign, I spoke to a family whose experience is reflected in the report to which I referred. The family has an adult son who is cared for on a full-time basis. They did not get one day of respite in the past 24 years. That is unbelievable. I could not believe it when the mother said the only way she could get respite care was if she told HSE she could no longer look after her son. If she did that, she would get respite care and her son would have to go into full-time care. We can see how unfair the system is for people in that situation.

Redress is needed. We need to go back to the basics of care, in particular around respite care. We need to consider how care in society is distributed because it is arbitrary. Care is an essential part of any caring society. This country is a great country that cares for its families and friends. However, there are discrepancies where people cannot get that public service when they need it. If they cannot get it when they need it, people will feel quite embittered and let down by society and the State. The State has to look after people when they need a rest and intervention. That is really important. The statutory home support scheme must be implemented as soon as possible.

Deputy Seán Canney

I too welcome the motion and thank Deputies Tully and Ryan for bringing it forward. They are colleagues of mine on the disability matters committee. The motion follows on from one the Regional Group put forward a number of weeks ago, in which we sought for the abolition of means-testing for the carer's allowance.

I want to recap some of what was said during the debate on that motion. More than 500,000 family carers, or one in eight people in the population, are regular unpaid carers. Family carers are the backbone of care provision in this country. However, they often lack support and recognition. Caring intensively over long periods without support or recognition negatively affects a carer's physical and mental health, financial status and social integration.

For many who care for a child with additional needs, their caring role is likely to last for many decades, which has serious implications for their long-term health, well-being and financial security.

Carers are predominantly women, with people in their 50s most likely to provide care. The number of carers increased by more than 50% between 2016 and 2022. It is expected that this trend will continue due to our ageing population. Carers save the State billions of euro each year. We should value this essential care, which is currently valued at €20 billion per annum.

The application of the carer’s allowance means test in respect of household income can make carers financially vulnerable by making them dependent on their partners' income. In many cases, a mother gives up work or a career to care for a child. She cannot get the carer's allowance because her husband is working and the financial means cannot be addressed. As a result, that mother is dependent on her partner or husband's income in order to live. She sacrifices so much and gets nothing in return other than to be at the behest of her partner. It is important that we address this issue. When our group brought a motion on this matter before the Dáil, it was not opposed by the Government. I presume it was accepted. The means test threshold was increased in the past week or two. However, we need to see a strong plan put in place in order that the means test is abolished within the next two to three years. In the meantime, I hope to see an incremental rise in the threshold for income to ensure that people who are carers can have the independence they need.

Our group sought the full abolition of the means test. This was a reflection of research carried out by Maynooth University and commissioned by Family Carers Ireland. It is time that we take up the recommendation of the Joint Committee on Social Protection, Community and Rural Development and the Islands in its pre-budget submission of July 2023 that a high-level officials group to scope out and develop a roadmap for the implementation of a non-means tested family carer support be established. The cornerstone of this debate tonight is to give recognition to carers.

There are other issues at play which people have experienced. Any Deputy who receives representations from carers or people who look after their loved ones will know that overnight respite is virtually non-existent. A family came to my office looking for one night a month respite for their child. They have been told in the past two weeks that they have been accepted and are being put on a waiting list. However, there is no guarantee they will get anything this year.

I had a case relating to a couple who are caring for their son. The mother's sister in the UK died. They were trying to organise respite but could not get it. Eventually, they had to change their plans. The mother had to travel on her own to the funeral of a close family member in the UK while the husband had to stay at home to mind the child. That was just a one-off request for respite from the family in question, and that is what happened. This morning, I was talking to a woman whose mother is in her 80s and has 21 home care hours. However, nobody showed up to provide care at the weekend. When I spoke to the daughter this morning, she said they were just about recovered after the weekend because they were trying to manage a hoist to get the mother in and out of bed. The mother wants to live at home. Sláintecare states that people should be kept at home for as long as possible. The other issue is that the mother's wishes have to be met. I can see that case evolving in such a way that somebody will be in hospital very soon, mentally stressed that they cannot cope. The home help hours have been allocated but people do not show up. This is a major problem in my constituency.

Another issue is transport for people with disabilities. The report by the Ombudsman two years ago advised that it was high time we brought back transport supports for people with disabilities. A primary medical certificate is deemed to be not fit for purpose. There is no way to appeal a decision because it is so restrictive. We have been told that something is going to happen with that. This has been going on since 2011. It is not the fault of the Ministers here tonight, but nothing is happening. The problem is that it is up to the Department of Finance to make a decision. I am of the view that it is up to the Government to make a decision. The transport and mobility supports that were available were taken from people with disabilities who did not apply at the time or who were not there at the time. They are without those supports while other people have them. The system is totally unequal and the quality of supports on offer is really bad.

Another issue that arises relates to people on community employment, CE, schemes who want to take on the role of being carers. When they look for the carer's allowance, they do not qualify because they work 19.5 hours a week on the schemes. The eligibility criterion for the carer's allowance is 18 hours of work a week. It would be only a very small step to increase the threshold to 19.5 hours in order that people could actually be on CE schemes or rural social schemes. The rural social scheme is not an employment scheme. It is a break for the carer to be out in the community. If they can go out during the hours that suit the caring, it is a no-brainer. However, this has not happened. There is a resistance to bringing the threshold above 18 hours.

I am like a recording when it comes to the housing adaptation grant. A review was carried out and is with the Department of Public Expenditure, National Development Plan Delivery and Reform. To call a spade a spade, the housing adaptation grant is a key component in keeping people in their homes. I commend the staff in Galway County Council on the work they do in turning around applications as quickly as they do and getting money out to the people who need it. However, the money is inadequate because it does not meet the inflationary costs that exist. This needs to be sorted. The Department of Public Expenditure, National Development Plan Delivery and Reform needs to stop stalling on this or holding it back for an election announcement. That is using people’s misery for the purpose of politics. It is time we got this out of the way, particularly as the review has been with the Department for months. We had three Ministers dealing with it. I do not know who is dealing with it at the moment. It could be Minister of State, Deputy Dillon. It was Minister of State, Deputy O’Donnell, before that and somebody else was dealing with it before that again. The review is with the Department of Public Expenditure, National Development Plan Delivery and Reform and it needs to be dealt with as quickly as possible.

An Ceann Comhairle

Deputy Healy-Rae and Deputy Collins are sharing time.

Deputy Michael Collins

I have stood in this Chamber many times and spoken of the work being done by the carers of this country. I have spoken of the amount of money they are saving the State, the personal care they give, which is second to none, yet the thanks these people get is that they are means tested. I can quote case after case, person after person, but it seems to fall on deaf ears. We hear a good deal in the Dáil about human beings. I am here to say the carers of Ireland are human beings too. It is about time the Government treated them like human beings. Carers should not be means tested. Very simply, if they are doing a job, give them the carer's allowance. It would cost the country a great deal more if carers did not do their jobs and if they relied on the Government to care for their loved ones. Being a carer, especially in a rural area, is a lonely life, with no supports in general and no financial support for some. Research indicates that, on average, women spend twice as much time caring as men do.

The costs of providing informal care, including losses in paid employment, are disproportionately borne by women. Let us face it, women bear the brunt of this. We are always speaking in the Dáil about equal rights and treating women fairly. Let us start by supporting our carers financially and emotionally, and before anyone starts saying that this is a populist thing to say, it is what my office hears on a daily basis. This is what I hear at my clinics every weekend. This is what I heard at the doors when campaigning recently. It is time this Government got in touch with the people of this country and listened to what we are telling it and abolish the means test for the carers of Ireland.

Supporting carers and allowing elderly people and disabled individuals to live at home is of paramount importance. Not only does it enhance the quality of life for these individuals but it also contributes to a more inclusive and compassionate society. The Government, communities and individuals must work together to create a supportive environment for carers and those they care for. There are so many ways people who are elderly and those caring for them are being treated so unfairly. I would like to raise some issues around home help. Home helps have been providing an excellent service but it is so difficult for so many elderly people to get a home help. It seems as though a system has been built whereby someone has to fall on the ground before they can get the home help instead of caring for the person in their eighties or nineties in their home before it gets to that. If they are cared for properly, they will not end up needing medical or hospital attention. Unfortunately that has not been the case at all here. People are continually having to beg and plead for home help hours. Some are caring for people during the night and are having to care for them during the day. I know quite a lot of people who are begging for half an hour or an hour extra in the week. I meet lots of home helps who say they are willing to do it but they will not be given the job. There is something wrong somewhere along the line. I look at the shocking way elderly people are being treated.

We will all know a person who has cancer. One such person came to me recently. They cannot get a medical card because their income is slightly too high. Surely to God in this day and age we can sympathise with a person when they have cancer and they automatically get a medical card until the cancer is cured, please God, and they can get back to normal life. There is a crazy situation here where, as far as I know, people come into this country and are automatically handed a PPS number and a medical card. These are healthy people. If they were not healthy, I would accept that but if they are healthy, they should not be getting a medical card. However, people here who are not healthy, who have contributed to the economy of this country, who have paid their taxes and who worked hard just need a medical card when they are going through chemotherapy or cancer treatment but, no, they do not get one because they are €5, €10 or €20 over. We live in a cruel society. The Minister of State can shake her head because that is a fact.

Deputy Anne Rabbitte

Can I correct something there, if the Ceann Comhairle does not mind?

An Ceann Comhairle

Yes.

Deputy Anne Rabbitte

That is not correct. If your clinician deems that you are medically in need, there is a one-page medical application form that is sent from the consultant directly to the HSE where it is approved within 24 hours.

Deputy Michael Collins

I thank the Minister of State for clarifying that but you have to be terminally ill to get that.

Deputy Anne Rabbitte

No.

Deputy Michael Collins

In most cases that is the case because I certainly know from my office.

Deputy Anne Rabbitte

No.

Deputy Michael Collins

The Minister of State is incorrect because people have come to my office and they are applying for the medical card and cannot get it even though they have cancer. The Minister of State should not come along telling me that is not the case. Unfortunately, you have to be terminally ill to fill the form the Minister of State is talking about. If not, please give me the form. She must have a magical form that we do not seem to have in west Cork.

The Government follows people and it punishes people. I have people coming in to me who want to avail of the fair deal scheme. Their families were prudent and they are honest people. They are followed to the grave to rob them of the few bob they saved all their lives so they could pay for their burial and maybe give a little comfort to their family but because they were prudent, they are being chased. Phil Hogan said once that he would chase people to the graves and that is what the Government is doing today.

Deputy Anne Rabbitte

Sound bite. Well done.

Deputy Michael Collins

Thank you too with your dream talk.

Deputy Danny Healy-Rae

I am glad to get the opportunity to talk about this very important topic this evening. I thank Sinn Féin and Deputy Tully for giving us the opportunity. I thank carers and home helps all around the country but especially in Kerry for the great work they do and continue to do. I must compliment one man who lives up the street and who came home from Limerick. Kilgarvan is a small place and he is only three doors up from me. His mother died a couple of weeks ago at 99 years of age. In 2014 he left his job in Limerick and left his wife and children there to stay with his mother. He took the responsibility of caring for his mother until the other day. I am thinking of my own uncle, Dan Rae, who looked after his mother - my grandmother - who lived to be 97 years of age. He took it on himself when he was quite a young man to look after her and do little else. There was no talk about money for carers at that time or anything like that. People do it out of love and they feel they have to look after the people who brought them into world and who looked after them when they were small and got them going. Unconditional love is what it is. Those people need to be looked after.

I thank Deputy Canney for bringing forward a motion a few weeks ago to get rid of the means testing for carers because it is often the case that if someone's spouse or partner is working, they are denied the carer’s allowance because of the means test even though they continue to look after their loved ones. So many things are happening with home helps. People are promised home helps but no one comes because we do not have the staff. That is not good enough.

Parents with children who were born with physical or mental disabilities look after their children. It is a massive burden and some, after a long wait, get the domiciliary care allowance but when the child reaches 16 years it is gone. We all know those people still need funding to keep going. It is a lonely life. Many of these people are living the disabled person’s life or the elderly person’s life. They have no life of their own.

That brings me to respite care. Take the massive territory from Poulgorm Bridge on the N69 all the way down through Kilgarvan, Kenmare, Sneem and Cahirdaniel and then the other side of the Kenmare River back to Lauragh, Ardgroom and the county bounds and up to Bonane. All that catchment area is depending on one respite bed in Kenmare hospital. People get one week but at the same time eight beds are idle in that new hospital. Those eight beds have been there since the hospital was built in 2011 or 2012. Those are the things the Minister should be addressing.

Home helps are going into houses for 20 minutes or half an hour and then they are supposed to go somewhere else. That is too short a time and it is too hard to get it. Many are not covered for weekends or bank holidays but people are still disabled or need help on those days.

Another issue that arises is that you need two home helps to operate a hoist and people have to be trained. It is often the case that only one can come in and that is not good enough. We should have surplus home helps available and at the ready to take up the slack. To leave a person for a day in bed, or even for 48 hours without getting out of bed at all, because there is no one to operate the hoist is not good enough.

In Denmark all their nursing homes and community care hospitals are practically empty because they have a proper home help system in their country.

An Ceann Comhairle

Thank you very much, Deputy.

Deputy Danny Healy-Rae

We should aspire to that and look after our own people. We are spending billions on others and the Government wants to do more of it with this Bill that it is trying to-----

An Ceann Comhairle

No, let us not go down that road. We are-----

Deputy Danny Healy-Rae

Thank you very much, Ceann Comhairle. It is a very serious matter.

An Ceann Comhairle

It is.

Deputy Danny Healy-Rae

It has to deal with it and be seen to deal with it.

An Ceann Comhairle

Next are Deputies Connolly and Harkin, who are sharing time.

Deputy Catherine Connolly

Regarding that last comment, quite a number of our carers are non-Irish. It is important to acknowledge that.

I thank Sinn Féin for tabling this motion. It builds on what Sinn Féin, Deputy Canney, others and I have done. We are doing this not to embarrass the Government. Well, perhaps we are doing it to embarrass the Government into acting. Rather than use my own words, I will cite the motion, which is looking for very basic measures, namely, a minimum respite guarantee and a relaxation of the carer’s allowance means test. We all agree it should be abolished, but if it were relaxed with a view to abolishing it, we would welcome that.

The State of Caring 2024 survey, which we have all referenced, is worth examining. It is the third such survey. In 2020, it showed that carers were grappling with financial hardships, on the brink of indebtedness and lacking critical support services. The 2022 survey stated that not only did the 2020 challenges still exist, but they had intensified significantly for many during the Covid pandemic. One might think that matters would improve after Covid, but the 2024 survey showed that carers were still facing the same challenges. The core issue identified at the start of the decade – we are nearly halfway through this decade – remains deeply entrenched, underscoring the ongoing need for a transformative approach to the support of family carers. Just like with climate change and no longer doing business as usual, we need transformative change in this regard.

For the life of me, I could never understand how the experts in the Department of Finance and the various Ministers for Finance never considered how much money carers saved the country. In my naivete, I could never understand how that was not a fundamental part of the budget every year. Perhaps this year the Minister of State might make a difference to the narrative in the budget in terms of what carers are saving our economy.

Between 2016 and 2022, the number of people providing regular unpaid care increased by 53% according to the census. In 2022, 61% of carers were female and 39% were male. There are many more statistics, but I will not go into them.

An Indecon report on the cost of disability was commissioned in 2018 and published on 7 December 2021, which was a long lapse in time. It identified no single cost of disability due to the wide range in the severity of disabilities, household types, etc., but it concluded that people with disabilities, believe it or believe it not, had annual extra costs ranging from €8,700 to €12,300 per year, although this could reach as high as €23,610 for people with multiple disabilities. We have had many budgets since the report was commissioned in 2018, but we have had two since its publication and have still not established a cost of disability payment. Along with the abolition of the means test, this would be a basic measure in a republic.

I tabled a motion approximately two years ago. The Government did not oppose it, which I welcomed. That motion was on opening up respite beds that were still closed after Covid. I welcome that the Minister of State took a hands-on approach to the matter, as did the Minister of State, Deputy Butler, but that was two years ago. I was seeking an audit of the respite beds that were available throughout the country. I still do not know how many respite beds there are. I do not know how many of them are in HSE-owned properties or in rented properties. We all table questions on how many respite beds there are available in Galway. The number is up and down and the beds still remain closed. The reasons for the change include a lack of staff-----

Deputy Anne Rabbitte

Is the Deputy referring to respite beds for older persons?

Deputy Catherine Connolly

A mixture. It is difficult to understand from the answers whether the beds are for older people or people with disabilities. There is a mix. I will put my hands up and say I am adding to the confusion.

These are basic requirements. Carers are saving us billions of euro. I heard a figure of €20 billion mentioned. I do not know what the exact figure is, but the one I was using was €12 billion. We could pick a figure out of the sky, but perhaps the mandarins in the Department of Finance might assist us.

Deputy Marian Harkin

I thank Sinn Féin for tabling this motion, which builds on many motions, including my own Private Members’ motion on the need to eliminate the means test for the carer’s allowance.

This motion is timely because we are coming up to budget 2025. As I have often said, the means test is commonly known as the “mean test”. From speaking and listening to carers over the past 20 years and from reading all the reports from Family Carers Ireland and others, I can see why that is so. For a long time, Family Carers Ireland has believed that the carer’s allowance is inadequate, gender biased, overly restrictive and not fit for purpose. It is inadequate because every single report on the cost of caring tells us that families face extra costs and extra bills of between €10,000 and €14,000 per annum. The Government’s own report tells us that as well. The carer’s allowance barely covers that amount. Research shows that 29% of carers are cutting back on essentials like food and heating, 39% live in households with a total income of €30,000 or less and 83% of those on carer’s allowance do not receive the fuel allowance. One can see why the allowance is inadequate.

It is gender biased because many of those caring are women. The income disregard is not based on the woman’s income, but on the household income. In many cases, if her husband or partner is above the threshold, the woman receives no carer’s allowance. This is restrictive. In order to qualify, one has to care full time for a person who needs full-time care. Less than a quarter of those who provide such care actually get the carer’s allowance.

One of the issues I have encountered is that a carer in receipt of the allowance can only study for 18.5 hours. Recently, I came across two carers who were trying to do online courses of between 20 to 25 hours. They are at home all the time and available 24-7, yet they are not able to access the carer’s allowance. One can see why changes need to be made. For example, we need to move towards a participation income that is not means tested and the family carer’s income support should be for all family carers who fulfil the assessment criteria. Family Carers Ireland is asking for these changes to be implemented by 2027. If one were to describe what a participation income might be, it could be paid at the rate of the current carer’s allowance without being means tested. It would be awarded because the person was caring.

As Deputy Connolly stated, there are many figures for what carers save the State. The figure of €20 billion is one that we often hear. If it is anywhere close the truth, then it is the equivalent of another HSE. Based on such figures, carers in my constituency of Sligo probably save the State approximately €250 million per year. In Leitrim, the savings are approximately half of that. In Donegal, it is twice that at €500 million. In comparison, the cost of abolishing the means test would be €397 million per year for the entire country. This proposal needs to be considered.

According to a report published less than a week ago by Family Carers Ireland, 72% of carers have never received respite. That is not good enough. In fact, it is not even close to being good enough. We have to do better. Family Carers Ireland is calling for family carers to have a right to a minimum of 20 days of respite per year.

It is not a big ask but it will make all the difference for those who are caring 24-7. I would appreciate it if the Minister would take what is in this motion to heart and make sure the next budget starts the implementation of getting rid of the means test for the carer’s allowance.

Deputy Violet-Anne Wynne

I support the motion and welcome the opportunity to speak of the legendary work that carers do for the most vulnerable people, day in, day out. Carers save the State an estimated €20 billion per year and that is the equivalent of a second HSE. Carers are predominantly female and, for the most part, are alone and isolated. They are not respected for the work they do or the moneys they save the State every single year and they do not get recognition for the important roles they play, which, by the way, has a knock-on effect in respect of their role as advocates.

In order for those wrongs to be righted, we need the abolition of the means test for carer’s allowance, and that is for a start. We need equity for carers. This is especially the case as we know that the number of those providing unpaid care is increasing year-on-year. Census 2022 pointed to 15% of all unpaid carers being over 65. I have been raising the need to abolish the means test for carer’s allowance. I know the Minister aims to report back in quarter 3 of this year but carers need action now. From the Family Carers Ireland report, for which I thank it, we know 69% are experiencing financial distress and 29% of those struggling financially are cutting back on essentials, such as food and heat. It is a bleak picture. We also know that 48% are experiencing loneliness.

I know of female constituents who want to avail of the incremental tenant purchase scheme, for example, but because they are in receipt of the carer’s allowance, that income is not deemed eligible for the application. Those ladies are trying to provide a bit of security for their families but, again, they feel their work is under-recognised and not appreciated. A number of cases that come through my office relate to carer's allowance and DCA applications, which parents say take far too long and are too arduous on their mental health.

Minister of State at the Department of Health (Deputy Colm Burke)

I thank the Deputies for their contributions. In coming back in response, it is important for me to state that I too have been involved in trying to work out support for people who reside at home. The challenge is that people are living longer and life expectancy in Ireland has increased by six years over the past 20 years and, therefore, we have a lot more people living longer. For example, the figure for those aged over 75 has increased from 220,381 in 2011 to more than 335,000 in 2023, which is more than a 50% increase in a very short timeframe, and that will continue.

In her opening speech earlier, the Minister of State with responsibility for disabilities, Deputy Rabbitte, outlined some of the policies, supports and initiatives in her Department that do and will benefit those who care for a loved one. I will outline some of the other supports provided both through the Department of Health and the Department of Social Protection. We are delivering on the commitment in the programme for Government to introduce a carer's guarantee that will provide a core basket of services to support family carers across the country regardless of where they live.

Since 2021, we have invested €2 million per annum in these services. The bulk of the funding of €1.9 million is being provided to Family Carers Ireland to deliver a mix of community and individual supports to a minimum of 5,000 new carers annually. There is an investment of approximately €62 million in funding provided for respite in older people’s services per annum. Respite may be provided in the community within the person’s own home, in HSE residential care settings, by agreement with voluntary organisations or by contracted private facilities. In June 2021, the HSE, in partnership with Family Carers Ireland, launched the home support emergency respite scheme, with funding of €600,000 to provide a total of 27,000 hours of respite care to family carers who require additional emergency respite. The HSE continues to provide emergency respite supports in 2024.

Since September 2018, individuals in receipt of either a full or half-rate carer's allowance or carer's benefit are automatically eligible for a GP visit card. This measure was introduced at that time to enable approximately 14,000 people who were in receipt of carer’s allowance or carer’s benefit and who had not qualified for a medical card or GP visit card on means or age grounds to be eligible for GP services without fees. On foot of this measure, as of 1 April 2024, 7,279 persons in receipt of either full or half-rate carer's allowance or carer's benefit have GP visit card eligibility. It should be noted that many carers may have already held a medical card or GP visit card prior to this welcome change. A range of other measures has been introduced in recent years to expand access to GP care, including the automatic awarding of a GP visit card to all persons over 70 in 2015 and a 10% increase to the income thresholds for a GP visit card in 2019.

The Government has invested an additional €235 million in home support services for older people since budget 2020. In 2024, we expect to deliver 22.1 million home support hours, an increase of 4.2 million hours over 2020. This is more than has ever been delivered before. There are now more than 57,000 people receiving home support services. In 2023, the Government allocated €2.1 million to allow dementia day care centres to reopen to full capacity and, in 2024, there are 58 dementia day care centres in operation. In budget 2024, a further €500,000 was allocated to increase the provision of in-home dementia day care. An additional €2.2 million was provided for day care services in 2024, providing invaluable support for older people living at home and those who care for them.

Income supports are also a vital factor in providing assistance to carers and ensuring they do not suffer financial hardship as a result of their caring role. The Government very much values the work of our family carers and since her appointment as Minister for Social Protection, the Minister, Deputy Humphreys, has sought to make sure that the interests of carers and the people they care for remain a focus of her Department’s priorities. In budget 2021, in her first budget in the Department of Social Protection, the Minister increased the carer’s support grant to €1,850, its highest-ever level. On Thursday, 6 June of this year, 132,523 carers received the grant in respect of 149,361 persons at an estimated cost of €275 million. The Minister, Deputy Humphreys, has also delivered on the programme for Government commitment to provide a pension solution for long-term carers. From January 2024, a new long-term carers contribution scheme was introduced.

Carer’s allowance is the main scheme by which the Department of Social Protection provides income support to carers in the community. Some 96,742 people are currently supported by this payment. This year, the expenditure on the carer’s allowance scheme is estimated to be over €1.1 billion. As the Deputies are aware, carer’s allowance is a means-tested social assistance payment awarded to those who are caring for people who need full-time care and attention. While the caring requirements of those being cared for may be different, this does not affect the rate of carer’s allowance as it is intended to provide an income support for the carer and does not depend on the individual requirements of the person receiving care.

The means test ensures that support is provided to those most in need and plays a critical role in determining whether an income need arises as a consequence of caring. The Minister, Deputy Humphreys, has made the carer’s allowance a priority in recent budgets, with significant enhancements to the means test. As part of budget 2022, she increased the income limit for a couple from €665 to €750 and for a single person from €332.50 to €350.

In addition, the amount of savings disregarded in the carer's allowance means test was increased from €20,000 to €50,000.

As part of budget 2024, the Government has gone further again and the weekly income disregard has increased from €350 to €450 for a single person and from €750 to €900 for carers with a spouse or partner. This change was implemented from Thursday, 6 June of this year. The changes meant that carers on a reduced rate moved to a higher payment. In addition, many carers who previously did not qualify for a payment due to their means were brought into the carer's allowance system for the first time. These are the highest income disregards in the social welfare system.

This motion calls for further relaxation of the carer's allowance means test. The reality is that any further relaxation of the means test would result in people who may have higher sources of income benefiting, while reducing the scope for the Department to provide income supports to lower income households. Those carers who rely solely on the income from the carer's allowance payment would not benefit from further increases in this regard.

Deputies will be aware that the Minister for Social Protection announced the establishment of an interdepartmental working group to examine and review the means test for carers' payments. The group is chaired by officials in the Department of Social Protection and includes representation from the Department of Health and the Department of Children, Equality, Disability, Integration and Youth, the lead Departments with responsibility for the delivery of supports and services for older people and people with disabilities. This group is to review the whole process and will report back in the not-too-distant future.

Taking all of this into account, yes, we would all like for more to be delivered in this area but there are constraints in any budget, and the amount that is now being provided, as I have set out already, is more than €1.1 billion in any one year. It is a huge increase compared with the past five years, and I think that is important to take into account, together with the other benefits we have provided to carers.

We have a challenge now with the growing elderly population in this country. The figures are quite clear. By the end of 2030, we will have in excess of 1 million people over 65 years of age. Therefore, there are going to be increasing challenges and we need to plan for that. If we remove the means test completely, it means other services may lose out. It is about getting the balance. I think the Department of Social Protection has certainly provided that balance together with the Department of Health, and it is important we take these issues into account when dealing with this scheme.

An Cathaoirleach Gníomhach (Deputy Aindrias Moynihan)

Gabhaim buíochas leis an Aire Stáit. Bogaimid ar aghaidh. I understand that to wrap up, Deputy Tully is sharing with Deputy Patricia Ryan.

Deputy Patricia Ryan

I thank the Cathaoirleach Gníomhach, and I thank Deputy Tully for bringing this motion to the floor today. I would like to say I am shocked by the figures in the Family Carers Ireland report, but in all good conscience I cannot say that. As Sinn Féin spokesperson for older people, I know only too well how much these selfless people do and how poorly valued they feel, especially when considering the millions they save the State every single year by caring for their elderly, disabled and vulnerable loved ones. Most of the care in these situations is being provided by women. Each of these carers is an individual person with a life they could lead, a job they could take, and a career they could have awaiting them if they were not a carer. They are also individuals who, when being assessed for a pension entitlement, often find themselves short of the required contributions because they were a carer.

Carers are individuals until it comes to applying for the carer's allowance. Suddenly, they are now part of a household and the household income is the benchmark that decides their entitlement. The average carer's allowance is €249 per week, with 35 hours of care having to be provided for that. It is the princely sum of €7.11 per hour, with the sad reality that most carers give care for many more hours than that. That is not even close to the minimum standard of living or even survival levels. How devaluing is that? The carer is a person doing a job caring for the vulnerable person, but the value of their work and dedication is determined by household income and not for their individual effort of work. To add insult to injury, a massive 72% of these people have never received respite. A total of 69% of them are struggling to make ends meet, with some even having to choose whether they eat or heat. It is a disgraceful indictment of Government policy.

Carers are sick and tired of platitudes and empty words from Government. They do not need another promise. They need proper support, recognition and remuneration for the sacrifices they have made to be carers for their loved ones. What we need is urgent reform of the carers scheme, relaxation of the means test for carer's allowance, an increase to the income thresholds, and a widening of the eligibility criteria to include the self-employed.

We discussed the housing adaptation earlier. I want to finish on this . The Minister of State spoke a minute ago about support for the carers. That in itself tells us there is a problem, if the Government has to support them with extras.

Deputy Martin Browne

I also thank Deputy Tully for bringing the motion to the House. This is in an important motion in light of the report by Family Carers Ireland, which revealed that 74% of those surveyed do not receive significant formal support, while 72% have never received respite.

By its very nature, the rights of carers and the supports they are given extend to the very people they are caring for. If carers are not given the support they need to care for themselves as well as the person they are caring for, both parties are being underserved. Respite is something carers have to constantly fight for. In a recent case I dealt with, it has become obvious that people who are approved for respite would generally rely on getting it due to another cancellation rather than getting it at the frequency they have been deemed eligible for because respite is running at capacity. This effectively denies carers the break they are due and which they need to enable them to carry on with their valuable work, which saves the State billions of euro every year.

Each year ahead of the budget, we hear from the Government benches about how valued carers are. We want to increase income thresholds in the means test for the carer's allowance. This will result in higher payments for current recipients on reduced payments, and it would mean more carers would qualify for the allowance.

Carers save the State €20 billion every year, yet that is not reflected in Government policy which, in my experience, seems more focused on excluding people from qualifying for payments. Take two cases I am currently dealing with in which a change of carer is needed. Despite the fact that, in both cases, the applicant would be looking after a person whose needs were such that a carer had previously been approved for them, the application failed. This effectively says that despite the person being given care having a level of need that justified a carer being assigned to them, they no longer are. Again, this makes no sense apart from suggesting that when it comes to the allocation of carer's allowance, finances take precedence over need. This is clearly in conflict with the spirit of the Joint Committee on Disability Matters, which advocated for transitioning to needs-led and rights-based disability services. Surely this approach must be standard.

There is a similar issue with medical cards. I am aware of a case in which a young girl with Treacher Collins syndrome and cerebral palsy had to re-apply for a medical card despite her serious lifelong condition. Her family had to submit 80 pages of documentation and devote a huge amount of time while also looking after her medical needs.

Deputy Ruairí Ó Murchú

It is fairly straightforward what we are asking for here and I welcome the fact the Government is not opposing this. If we are talking about carer's allowance, it is quite straightforward. We need to have an element of flexibility, and whether we are talking about the time someone spends on education or working, 18.5 hours with no element of flexibility is not working for many. We know there has to be some element of loosening-up of the means test threshold and even beyond that, because we know this is the only direction this can work.

As has been said by many, a huge amount of work is done by carers which we could not afford as a State if we did not have those people who do that huge work. I commend Family Carers Ireland and also the likes of Inclusion Louth, which has done a huge amount of work and advocacy over the years. I know the Minister of State has himself engaged on respite care in a huge way, and we all know the huge work that has been done, whether we are talking about Maria Goretti or Anam Cara. It is making sure we can deliver what is necessary, and that guarantee we are talking about with regard to respite is something that needs to be followed up.

I am going to cut straight to the fact that 34% of carers said the accommodation is not suitable to meet the needs of the person they care for.

We know we have dealt with these issues. We know the housing adaptation grants are being reviewed and we know what actually needs to happen. The Government needs to follow up in this regard. We could talk about disabilities here for the next four hours but I do not have any time left so I will let it go.

Deputy Pauline Tully

I wish to thank everyone who contributed to this debate. It is obvious, from right across the floor, that carers are really valued for the work they do, but they are a cohort who need support. We need to trust carers more. The 18.5-hour limit was raised consistently. It is too restrictive regarding study or work outside of the home. As Deputy Canney said, they cannot even undertake a community scheme because that amounts to 19 hours. This is something that could be looked at and adjusted. We have to trust carers will provide the care their loved ones need and if they have the opportunity to do some work or some study in that time, they should be allowed to do so.

The respite guarantee is really important because having a break is really important. A break is as good as rest. Having such a high cohort of people who do not even have one night of respite is really important and needs to be addressed.

Supports and services for disabled people in particular are really important. Similar to section 39 organisations and that whole pay parity issue, a lot of the services have not been restored to full capacity after Covid-19. I wish to mention in particular the Irish Wheelchair Association's services in Cavan which, since Easter, are on a Covid-19-type service due to staffing issues. The HSE does not seem to have engaged as it promised it would. I have tabled a parliamentary question on this issue because I want to know what is going on in this regard. There are people and carers who need that service. It needs to be restored as soon as possible. I cannot commend the staff in there enough but they need support.

A lot of people raised different heartbreaking stories and we hear them all the time in our constituency offices. One story which comes to mind is that of a young lady in my area who has locked-in syndrome. The only part of her body which she can move is her eyes. Her family can provide full-time care. The HSE has approved a home care package in which carers are supposed to visit three times per day. That package has never once been fulfilled in total. The family is left in a situation whereby it does not know from one morning to the afternoon to the evening whether it will get the three carers it requires to use the hoist or whether it will get one or two. The family is on a knife edge completely and it is not fair. A statutory home care package for people is really important. Someone made the point that if carers could actually work in a more flexible way and go out, they might be able to provide a few hours of care to another person in another house or something like that. It could be something that is looked at to address the shortage we have in the care sector. It is a very serious issue.

The means test is a big issue as well. It is something which has to be addressed. As I said, I would appreciate getting the difference in the costings the Department has around abolishing the means test and how its costings are €200 million more than the costings Family Carers Ireland, myself and another group have got from the Parliamentary Budget Office. We all need to work on this together to try to find a way to either raise the threshold significantly or abolish the means test completely.

Question put and agreed to.