Mark Daly (Fianna Fail)
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I welcome Mr. Louis Merchant and thank him for all his work in my office over the past number of weeks. I really appreciate it. I hope he enjoys his summer in Dingle.

Marie Sherlock (Labour)
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I move:

That Seanad Éireann:

recalls that: - the Citizens’ Assembly and Joint Committee on Gender Equality recommended a referendum to replace Article 41.2 of the Constitution obliging the State to take reasonable measures to support care within the home and wider family, and the Government has committed to a referendum on this in November, 2023;

- there are over 500,000 family carers in Ireland, and unpaid family carers save the State €20 billion a year, while the 2022 Census shows the number of unpaid carers increased by 53 per cent to over 299,000 from 2016;

- the Government committed to introduce a pension solution for long term carers in January 2024; notes that: - the restrictive means test and low rate of Carer’s Allowance payment and the complex application appeals process for Domiciliary Care Allowance (DCA) are not sufficient to meet the financial needs of those caring for dependents;

- research by the Vincentian Partnership for Social Justice in 2022 shows income supports for family carers are inadequate in supporting low-income households caring for a child with a profound intellectual disability to meet a minimum essential standard of living, with an additional weekly care cost of €244, being more than the maximum rate of Carer’s Allowance;

- it is 33 years since Carer’s Allowance was introduced and there have been repeated calls for the abolition of the means test which has been estimated to cost €397 million;

- both the National Economic and Social Council and Joint Committee on Gender Equality recommend that consideration be given to a participation income for carers;

- if the person you are caring for is under 16 you must be getting DCA to qualify for Carer’s Allowance, but nearly 38 per cent of claims for DCA were rejected in 2022, while over 70 per cent of over 2,000 rejected cases were successful on appeal in that year indicating major problems with the current application and approval system;

- Family Carer’s Ireland has called for the weekly rate of Carer’s Allowance and Carer’s Benefit to be increased to €325 in Budget 2024; agrees that: - the current rate of Carer’s Allowance undervalues care work and is the only social protection payment where recipients are expected to provide full-time work and in return receive just €16 more than the basic social welfare rate; and calls on the Government to: - carry out an evaluation of Carer’s Allowance and other social protection income supports to ensure it meets the needs of parents, guardians and next of kin caring for relatives, as part of a full cost of care review that also calculates the financial cost and societal value of unpaid care;

- at a minimum in Budget 2024 increase the Carer’s Allowance income disregard to €1,000 for couples and €500 for single carers, and outline a pathway to abolish the means test by 2027;

- increase the rate of Carer’s Allowance and Carer’s Benefit by a minimum of €25 in the Budget with a pathway to a Minimum Essential Standard of Living and the Family Carer’s Ireland target of €325 a week;

- commit to increasing the rate of the Carer’s Support Grant to €2,000 in Budget 2024;

- reform the application process for DCA which is not sufficient to meet the financial needs of those caring for dependents, raise the age limit to 18, and increase the rate of payment;

- replace the Mobility Allowance and Motorised Transport Grant with the long promised Transport Support Scheme, and increase funding to the Housing Adaptation Grant;

- commit the additional €3m annually needed to fully fund the Carers’ Guarantee.

I thank the Minister for Social Protection for coming to the Chamber. I thank Senator Wall, who has done so much in the area of carers' supports in the Joint Committee on Autism and Joint Committee on Social Protection, Community and Rural Development and the Islands. I thank the people who have shared their experiences of caring roles with us. I know they will be arriving in the next minute or two.

As we all know, hundreds of thousands of people across this country have found themselves in caring roles either full or part time. It can include caring for a child with additional needs, a family member with a physical or intellectual disability or a parent or relative who can no longer fend for himself or herself. They do it out of love but, unfortunately, the reality is that many carers suffer in silence because of a sense of wanting to afford dignity to their loved one, a sense of pride, a need for privacy and a desire to protect those for whom they care. We know that of all this means there are thousands of people hanging on by the skin of their teeth in financial terms and in terms of their health and well-being.

The outcome of the citizens' assembly on care was certainly ground-breaking. The recommendation to ensure recognition of care in Bunreacht na hÉireann will make up for the many decades of a very old-fashioned view of care and provide recognition for the thankless work so many undertake for their loved ones across this country. We hope to have the referendum at the end of this year. I look forward to the Minister providing an update on the date of that referendum in her contribution.

With or without the referendum, the true value of any insertion or change to Bunreacht na hÉireann will be how we treat carers in practice. How we do afford them recognition and respect for the work they do selflessly day in and day out? We know the impact on so many is debilitating in terms of holding on to paid employment and the impact on their household finances and sense of independence.As we know, the reality is that, by and large, it ends up being mostly women who step back from their paid employment or take on that caring role. There are of course many men as well. I am very conscious that there are many men in caring roles who do not feel able to talk about it but, by and large, the majority of carers are women.

Our motion today seeks to ensure that carers are better supported by the social welfare system. Families come from vastly different care situations but there is a common thread throughout each of their experiences and that is the shocking lack of staff available for community therapies and supports, whether it is home care packages, occupational therapy, speech and language therapy, care for children, care for older people or care for those with a disability. The inconsistent and patchy service that we see across the country means one thing: that there is a disproportionate burden, in effect, on families to care for their loved ones. We have had people tell us heartbreaking stories. There is an 80-year old man who is caring for his son with an acquired brain injury. On top of the distress and worry of caring for his son, he now has to fill out a tax return every year on his carer's allowance. He gets a part-rate carer's allowance. The stress of having to fill out that tax return at 80 years of age has meant that this man is seriously considering giving up his carer's allowance. We have the parents of the 13 young adults who are leaving St. Michael's House school, who now have nowhere to go. Those parents have given their lives to their children with an intellectual disability to ensure that they have the proper supports and care. There is the mother who will stick in my head forever, who has a 40-year-old daughter with an intellectual disability. The daughter has ten hours a week in Supervalu and has been told by the health system, effectively, that she is deemed too independent to be put into sheltered housing. Her mother, who is now 78, does not know where her 40-year-old daughter will go when she is simply unable to care for her any longer. I know a number of mothers who have autistic children who have ended up having to take a step back from their paid employment in order to look after their children, in particular because of the shocking lack of services with regard to initial contact for assessment and then, on the other side of it, for therapies. One mother said to me during the week that the domiciliary care allowance was the most upsetting form she has ever completed.

We know from Family Carers Ireland that 1,500 people with intellectual disabilities are living with their carers, their parents, who are aged 70 plus, and 450 are living with parents aged 80 plus. There is a huge lack of residential supported housing and there is an unmet need for 2,300 residential places. The lack of services is at the heart of why carers shoulder such responsibility. We absolutely need to see an increase in services, but our motion today is about how we ensure that we provide supports to carers too. Our focus in particular is on the design of the carer's allowance. To me, it is very much from a bygone generation. When we see who it excludes, we see a payment utterly unfit for purpose and ignorant of the many different care needs that exist. It is sexist and penalises women in particular who have to reduce their hours and leave jobs to care at home. It is the gross income of the household that is considered, not the net income, and not the individual doing the caring. For those who are eligible, it locks many of them into a low income and restricted situation. Rather than encouraging carers to be able to take up employment or education, there is little or no pathway for those on carer's benefit or the carer's support grant. Ultimately, the carer's allowance was originally introduced more than 30 years ago to look after those who were caring for older persons, when the reality is much broader than that.

I am painfully conscious that profound change is needed in the provision of services. Where I am located on the north side of Dublin in community healthcare organisation, CHO, 9, we have the longest waiting list in the country for children to get an initial contact for disability services. That is the case when we compare CHO 9 with all other areas across the country and it places an enormous strain on parents who are trying to help and support their children, who need support. As the Minister is aware, weeks and months matter in a child's life. Parents see their child regress because they are not getting support.

In our motion we talk about the financial supports but we must also look at the other supports. We know from research conducted in 2019 by Family Carers Ireland in conjunction with UCD and the College of Psychiatrists of Ireland on more than 1,100 carers that 67% suffer from physical ill health; a massive three quarters are worried about their health and well-being and 50% were diagnosed with mental health issues. I think of one family in particular where not one but both parents have developed serious mental health difficulties because of the strain of caring for their eight-year old son and the constant grind of fighting for respite and the psychiatric care he needs and fighting for a proper education for him.

The irony in this country is that while we have a statutory right to hospital care and to public healthcare, we do not have a statutory right to home support. I know the Government is making moves in that space, but there have been delays. The reality is that care within the community has remained the Cinderella or the poor relation, relative to all else in the health services. We are into the sixth year of the Sláintecare plan, yet we see such torturous progress and a real delay in progress in terms of providing care in the community. It feels that we are no closer now than we were back in 2017 when the report was published.

Census 2022 records just under 300,000 people self-identifying as carers. That is an increase of more than 50%, but what is really striking is the number of people who are providing care for 43 hours or more in a week, which has more than doubled between 2016 and 2022. There are now 86,972 people who tell us that they are providing unpaid care for more than 43 hours in a week. We have to ask what we are doing for those people to ensure that they are able to provide the dignity and respect to their loved ones, but also that we are looking after them as well, and that we do not have lost lives. I will hand over to my colleague, Senator Wall, who is seconding the motion.

Mark Wall (Labour)
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I second the motion. I too welcome the Minister to the House today. I thank my Labour Party colleagues for proposing the motion. As my colleague, Senator Sherlock, has said, we are dealing with 500,000 family carers. I have spoken previously to the Minister at the Joint Committee on Social Protection, Community and Rural Development and the Islands about the carer's allowance. We have had a number of debates on it. The simple fact is that we have many people in this country who do not qualify for carer's allowance because of the restricted means test or who are paid a half-rate carer's allowance.

I attended a recent pre-budget discussion in Buswells Hotel organised by Family Carers Ireland, which is calling for an increase in the carer’s allowance disregard to €1,000 for couples and €500 for single carers. I hope that is something the Government can do this year. The other issue that Family Carers Ireland has asked about is that we would bring the weekly payment up to €325. We all know that carers in this country are saving the State up to €20 billion per year. I think that is a figure on which we can all agree. Family Carers Ireland is also seeking for the means test to be disregarded over a period, bringing it right up to 2027. It is a reasonable ask of the Government that it would reduce or get rid of the means test in that period.

Senator Sherlock mentioned the domiciliary care allowance and I want to raise it also today. We in the Labour Party and Family Carers Ireland have called for the allowance to be extended to the age of 18. As the Minister is aware, at the moment it is paid to the age of 16, after which people have to apply for the disability allowance. In addition, it has been mentioned how difficult the application process is for the allowance. It has one of the highest rejections of all social welfare payments in the State, with more than 70% of appeals being successful. I have asked the Minister previously why we have to wait for an appeal to allow people to get a domiciliary care allowance. Something needs to happen. We have discussed at the Joint Committee on Autism the difficulty people experience with filling in forms. The Minister has said we need more data on the initial application. Something needs to happen with the domiciliary care allowance because 70% of the applications win on appeal, according to statistics from 2022. Something needs to be done to change the application form and to help the people who deserve the allowance most.As Senator Sherlock has said, we also need the Government to carry out, as a matter of urgency, a carer's allowance evaluation on what is happening with care in this country, as our population ages. There was a commitment in the programme for Government from the Minister of State, Deputy Butler, that this would be done by mid-2023. We do not know what is happening with that at the moment. Perhaps in her reply the Minister can let us know if she is aware of what is happening in respect of the review of care. I refer to the commission on care in this regard. The Minister or her officials may have some details on the current position in this regard.

Carer's allowance has been an issue for 33 years. There is absolutely no doubt that it needs to change. Too many people are outside of the system. We have 500,000 in the country at present who provide 24-7 care. This is something that needs to be said at every opportunity. These people are caring for their loved ones and they need help from the Government. Too many of them are only getting the half-rate carer's allowance or are not getting any allowance at all.

I will read out one of the many emails I have received on this issue because this is what brings it home and personalises it for me. It states:

Hi Mark. I hope you're well. I'm a full time carer to my son who's nine and has severe autism. He is non-verbal and has challenging behaviour. He doesn't always sleep. A year ago they means tested me and over €2.80 carer's was taken off me. I'm only receiving half-rate carers so I'm not even worth €130 to the State. Regardless of what my husband earns, this was my money, money going into my account to give me some kind of self-worth in the struggles I have day in and day out. Because of my son's condition, I have to be available 24-7 so it's not possible for me to have a regular nine to five job. Living with autism is very hard. No holidays as you would never get him on a plane. We bring him to matches which is very hard work but with only having my sister as backup, that's what we have got to do. You can't use a regular babysitter. They have tried and he has flipped.

I did appeal it and I lost. I really believe that decision makers have lost touch with how hard our lives are. It's 12 years since we have been on a holiday and probably we never will be again. When life is hard holidays help. It's something that we always look forward to. It's now not an option for us. Even going out to dinner is a struggle or going for a walk is a struggle. I've been scraped, bruised. Last week, we had a meltdown that lasted for over two hours. I really thought the police would arrive at my door. I know so many people in my situation with carers. It's an absolute disgrace. It's my turn tonight as we swap it around with myself and my husband. Mark, it's two in the morning and I write to you as I'm awake with my child.

That is what is happening with carers in this country and that lady is only on a half-rate carer's allowance. I also welcome our visitors into the Gallery today and they are the most important people, namely, June, Alicia, Matt, Tracy and, of course, her daughter Willow, Geraldine, Catherine, Trudy and Sandra. I also welcome Catherine Cox from Family Carers Ireland.

I know that the Minister has spoken about this issue. We are one of the wealthiest countries in the world and have a budget surplus but want to do something about carer's allowance once and for all. I know that the Minister has considered this. We have spoken about it at various committees. The Labour Party is calling on the Minister to back the calls from Family Carers Ireland so that this year, we will see something substantial for all the carers in this country

Catherine Ardagh (Fianna Fail)
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I welcome the Minister. I thank the Labour Party for tabling this motion. It is really important and timely because we have the budget discussions. As my colleague said, there are 500,000 or more carers in the country. I have a son who has level three autism. He is non-verbal and has severe, challenging behaviours. I am constantly up at two in the morning, but I have a privileged life. I am a Senator. I have a great job, which I love, but it is tiring. I am here to represent those who do not have the privilege that I have.

This affects women. If I am called now, if my son needs me, I may have to go. This is not because my husband will not, but because I feel like I have to do that. It is my job to go.

The calls outlined by Family Carers Ireland are so sensible and they are not huge request at all. They have calculated that scrapping the means test would only cost €295 million a year. That would help an extra 300,000 families. These families are not getting the support from other Departments.

We have the assessment of needs but it is not fit for purpose and children have huge unmet needs. What is happening is that families are going to loan sharks. They are doing everything they can to access services such as occupational therapy or speech and language therapy for their child. They feel like they have to do every single thing they can just to give their child a chance in the world. If they do not, they suffer guilt and the feeling that they are letting their child down. Parents should not have to harbour such feelings. It should be up to the State to properly provide therapies to children. We know that the system is a shambles and parents should not have to be battling for basic services. We might not be calling for all these extra supports if we had those basic needs properly met or if there were proper facilities in schools to mind our children or if there were enough therapists, teachers or places in early intervention classes but that is not the case, so many mothers and fathers are taking the time to care for the children at home and not just during the normal day. At night time, so many children and adults cannot be left on their own for five minutes. Many people cannot leave their child unattended for five minutes because they do not know what they will grab or what they will do. It is dangerous.

My view on carer's allowance is that we need a complete root and branch reform of the carers system. It has not been changed since the 1980s. When it was originally introduced, it was for people who were looking after elderly parents. We do a good job on that. We have the home care and fair deal schemes. There are capacity issues but we are doing okay. When it comes to looking after children and young adults, however, we are lacking. We need to look at this properly because a lot of parents are taking the responsibility for this and the State has not stepped in properly. We need a huge, root and branch reform. This would include basics like getting rid of the means test and increasing the allowance. With the cost of living at the moment, €236 per week does not really buy that much.

Senator Wall and I are on the autism committee. The net cost of having a child with autism is €28,000 per year. If you want to give your child a chance, you will need to be earning €60,000 and then you will fall outside the means test. These families are able to get loans and they fall into debt. Their lives are really hard. Their lives can be miserable depending on the needs of their child. Some people cannot leave their house. They have to always be in their house, in their kitchen because that the safest place to look after their child. It affects other members of the family and people do not have the proper family life they envisaged.

The second issue I wish to raise is respite. We have an archaic system of respite in this country. Not every parent wants to send their child off for a weekend. Many parents would like just a few hours at home. As Senator Wall's email noted, you cannot just pay the girl next door €12 to come in and mind your child. She is just not trained to do that. We need a proper system of respite, perhaps using the home care system we have for elderly people to give parents a few hours' break. Many people do not want to leave their kids for a weekend. They do occasionally need a holiday but they often just want help to go for a coffee or go for a walk, feel human again and have a chat with their friends without talking to them about all their needs. It would enable them to be how they were before they had to be a carer, which is all-consuming.

I apologise for getting emotional but it is a hugely important issue. Well done to the Labour Party for bringing this forward. The Family Carers Ireland submissions are just so well thought out. Nothing in there is over the top. The suggestions should all be taken on board for the budget. We are talking about being a wealthy country and having all this extra money. This is where to put it.

Mark Daly (Fianna Fail)
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Thank you for sharing your own personal experience, which you used very well to articulate the needs of so many families in the country.

Paddy Burke (Fine Gael)
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I welcome the Minister to the House. I congratulate the Labour Party for bringing forward this motion. This is a great motion in my view. I thank the Minister for accepting this motion on behalf of the Government. The Minister needs to be congratulated for the reforms she has implemented. I would say she has delivered more than any other Minister in the Department of Social Protection, as it is now known.We have seen the electricity allowance and other measures introduced in the past two years, particularly since the pandemic. I have no doubt that in the upcoming budget in October the Minister will have a good look at what is involved in her Department and the reforms that can be made. I also have no doubt she will look closely at the motion before us. As previous speakers said, the carer's allowance was introduced 33 years ago and the means test is going to cost close to €400 million. I hope the Minister will take a close look at getting rid of the means test.

I had first-hand experience of carers in action when they cared for my late mother who died before Christmas. She was in her mid-90s. I would not have been able to care for my mother. I would say I am speaking for the vast majority of men throughout the country. Carers do an unbelievable job. They do a great job for families and the State. They save the State millions of euro every year. The array of jobs they do in the home for the people for whom they are caring is unbelievable. It can include preparing meals, showering patients and making sure they get medicines. In my mother's case, we had carers who were provided by the HSE and others who were paid for by the family. They complemented each other and various hours were covered throughout the day and maybe at weekends. That worked really well. The carers provided an unbelievable service and my family is indebted to the people who cared for our mother.

I have been contacted by several people regarding respite, not only for families but in cases where a wife is caring for a husband or a husband is caring for a wife. They, too, need respite and we need residential respite in those cases. The patient should be taken into a residential home for a week or whatever length of time to give some respite to the spouse or whoever is doing the caring on a full-time basis. Let us face it, it is not just 40 hours a week, it is 24-7 care. It is all day every day, all year round and those carers need to get some respite. I agree with the previous speakers on that.

I raise with the Minister the issue of occupational pension schemes which I raised on the Order of Business earlier. This relates to An Post, Coillte, the Irish Aviation Authority and Eir. The occupational pension is €240 on average whereas the State pension is approximately €265. Increases in those particular occupational pensions require the approval of the Minister, whether that is the Minister for Social Protection or the Minister for Public Expenditure, National Development Plan Delivery and Reform. Perhaps it is both. Between 2008 and 2022, the State pension rose by 18.8% whereas the occupational pension for An Post increased by only 6.7%. That is not taking allowances into account. The occupational pension for these pensioners has fallen way behind the State pension. I ask the Minister to look at this issue in the run-up to the budget. If it does not fall within her remit, I ask that she bring it to the attention of the Minister for Public Expenditure, National Development Plan Delivery and Reform.

I am delighted the Minister will accept the motion. I congratulate the Labour Party again on introducing it. It covers a large number of areas, all of which are very important to different people. We have raised the mobility allowance, which is addressed in the motion, a number of times. Various mobility-related transport grants are available. The Minister should also address this area. We should do our utmost to do whatever we can for people with a disability to improve their lives and make life easier for them.

I welcome the motion and I thank the Minister. I have no doubt she will have a good look at all of the issues in this wide-ranging motion in the run-up to the budget next October.

Pauline O'Reilly (Green Party)
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I thank the Minister for attending and the Labour Party Senators for tabling the motion. Ireland is unusual when it comes to the type of care we have when compared with other European countries. We have a high number of family carers, which is unusual. A lot of countries have moved to institutional care, and we are the richer for not having done so. With that, however, comes a huge responsibility on the State. Based on everything I have heard and everything the Minister said, as well as judging by what we put into the programme for Government, there is a recognition of that now, but with that recognition, we need to see where the cash is.

I acknowledge all the great work the Minister has done in this area. It is only when we go back and look at it, or when we are a recipient, that we can see how much she has done, including the increase in the carer's support grant to €1,850, the highest ever; the increase in the capital and savings disregard for the means test assessment from €20,000 to €50,000; all the increases in the carer's allowance; and so on. Underpinning all this is the request from Family Carers Ireland to re-examine the means test. Regardless of how much income people have, it is very expensive to be a carer. It is not just about a person's income but also the expenses that go alone with caring. As Senator Ardagh outlined eloquently, sometimes there is no end in sight for a lot of carers. It is not a case of just facing a few years and then returning to the labour force. In many cases, you just do not know what the future will hold.

When the Citizens' Assembly on Gender Equality met, there were no boundaries on what it could discuss. It was a surprise to many people that a great deal of what was discussed by those citizens was about care, again going back to the nature of the people in this country. That was seen as a huge priority. I was honoured to be a witness in 2018 at a committee meeting with Family Carers Ireland advocating not for the removal from the Constitution of that dreaded reference to a woman’s place “within the home" but a replacement in order that we would make sure we recognised, through our Constitution, the fundamental place of carers. Before we went into that meeting, it was almost a done deal that the referendum would just remove the phrase, but overwhelmingly, the people on that citizens' assembly disagreed and agreed with the point Family Carers Ireland and I made at the time, namely, to hold a referendum that would place care at the centre of it. I would love an update on that. The Minister for Children, Equality, Disability, Integration and Youth, a member of my party, will have a role in this referendum and I look forward to the wording coming to Cabinet and forming the referendum, but what is stated in our Constitution will be only as good as what it provides in concrete terms for carers.

We have discussed at length the income and supports, but let us not forget there are 3,000 underage carers. Where is the support for them? They do not fall inside a lot of those brackets. We really have to think about the diversity in the types of people who are caring and remember at all times that people want to do it and they love their family members. It is difficult to advocate for yourself in that space because you might feel it is your duty or you might want to do it, but that is where the role of Family Carers Ireland, and of us as politicians, that other people are advocating for comes in. Whether it is called work or a labour of love, carers are not entitled to join a union that supports carers because they do not get income. That meant that until some of these organisations formed, there was silence. Carers tend not to be in the workforce or where policy is made, and they have not been represented in that full sense. The asks are fairly modest, but underpinning it all is a review of how we are doing things. That is not too much to ask.

Pensions are something in which there has been massive inequality for those who take time off work to stay at home, whether for a short or long period. Nobody can say that value given to society should go unrewarded towards the end of somebody's life. I know the Minister is doing work on that and, therefore, I look forward to hearing her response in that regard. We have a huge opportunity in the Government to get that right, and it is about time we did so.

I again thank Senator Sherlock, all the other Labour Party Senators and the Minister.

Lynn Boylan (Sinn Fein)
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I too thank the Labour Party Senators for bringing forward this important motion and welcome the visitors to the Gallery, especially those who are carers. It is much more difficult for such people to take out the time to attend, but that shows the importance of this debate. As other Senators said, family carers play an immeasurably important role in our society that should be valued. They dedicate their lives to caring for their loved ones and there is conflict that goes with that whereby people feel as though it is something they should do. Equally, they may feel it is not right that they are not valued properly in society and that they have to advocate for better conditions. Their dedication and sacrifices often go unnoticed or undervalued and, as others have said, it is no coincidence it is mostly women who end up having to do most of the heavy lifting when it comes to care work, whether for children, elderly parents or family members with disabilities.Women often become the primary caregivers devoting their time, energy and resources to ensure the well-being of their families. It is vital that we recognise the immense value that family carers bring to society and that we actively support them in their crucial role, not only with kind words and platitudes but to put real concrete value on the care they are giving.

Increasing the carer's grant to €2,000 is included in Sinn Féin's charter for family carers. Adequate financial support, access to respite care and comprehensive training and resources are all essential to enable carers to fulfil their responsibilities effectively, and providing these resources not only improves the well-being of carers but also enhances the quality of care they can provide to their loved ones.

As Senator Boyhan said, it is important to think about who is caring for the carers. I do not know if Senators heard Oliver Callan's radio show today. He had a woman on who became a carer for her mother at a young age. She spoke about the mental toll caring takes on the carer. She also spoke of feeling guilty about talking about it and trying to cover it up, which then brings its own problems such as heartaches, strokes and all that comes with the stress involved. It is important that we recognise that carers need carers as well. We need to look after them.

It would be remiss of me, in my role is as climate justice spokesperson for Sinn Féin, not to mention that as we make the transition to a low-carbon future, we need to start valuing the role of caring, both the carer workforce and those who offer respite and work in the professional care sector and also family carers. These are the jobs and professions we need to start valuing and expanding, rather than carbon-intensive jobs.

The motion also makes a good point about the process for domiciliary care allowance and the challenges parents face in trying to get the allowance approved for their child. It may be refused and they have to appeal the decision, which is time-consuming and stressful, not to mention the fact that parents cannot qualify for a carer's payment for their child until a domiciliary care allowance application is approved. Senator Wall pointed out that 70% of 2,000 rejected cases for the allowance were successful on appeal. That alone tells its story. That people are being put through the hoops of having to apply, with all the stress that entails, and then having to make an appeal and have their appeal upheld shows that there are definitely problems with the current application and approval system.

I also echo the comments of Senator Pauline O'Reilly on pensions and care credits. When I was an MEP in Brussels, we strongly argued for recognition of those people, mostly women, who take time out of their careers to be carers, whether for their children, elderly parents or somebody with a disability, and are then punished in later life because they have not built up credits for the State pension. That needs to be addressed.

As I said, words are great and we all seem to be in unison when we say we value the role of the family carers and believe the system needs to be improved for them. They are only words, however, and it is time society put those words into action. We are constantly hearing how wealthy we are and how much money there is, yet those who could do with State supports most seem to be the people who have to fight the hardest.

I commend the Labour Party on bringing this motion to the House. It has the fully support of the Sinn Féin Senators. I apologise that I have to leave the debate for a meeting but I will look back over it to hear the Minister's response.

Heather Humphreys (Cavan-Monaghan, Fine Gael)
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I welcome the opportunity to discuss this important issue. I thank the Senators for their contributions and for bringing forward the motion.

This is a timely discussion. I will host my Department's pre-budget forum next week when I will sit down with all the advocacy groups, including those representing carers.

The Government is aware of the valuable work being carried out by family carers across the country. As a result, we have taken extensive measures to support carers over recent years. The main income supports provided by my Department include carer's allowance, carer's benefit, domiciliary care allowance and the carer's support grant. Spending on these payments in 2023 is expected to be in the region of €1.6 billion. Total expenditure on carer's payments has increased by over 50% since 2015. The number of people in receipt of carer’s allowance has almost doubled, from 50,000 in 2010 to almost 94,000 today.

As Senators will be aware, carer’s allowance is a means-tested payment awarded to those who are caring for people who need full-time care and attention. I regularly meet carers in my constituency office and I fully recognise the vital work they do because caring is a tough job. For those people who step up to care for a loved one, whether it is a mother or father in old age or a son or daughter, it is not easy.

I thank Senator Ardagh for sharing with us her story about her son. It was not easy for the Senator to stand up and tell that story. I also thank Senator Paddy Burke for sharing the story of his late mother. I am aware that one of the Senator's priorities was to keep his mother living at home. The work the carers provided, coupled with the support of the family at the time, was essentially in enabling the family to do that. Caring can take its toll on people's physical and mental health and on family life also.

I value the work of our family carers and since my appointment as Minister for Social Protection, enhancing the supports available for carers has been a priority for me. I welcome all the carers and members of the representative organisation who are in the Gallery.

In budget 2021, my first budget in the Department, I increased the carer’s support grant to €1,850, its highest ever level. In budget 2022, I was the first Minister in 14 year to make improvements to the carer's allowance means test to enable more people to qualify for the payment. I increased the income limit for a couple to €750 and for a single person to €350. In addition, I increased the amount of savings disregarded in the carer’s means test from €20,000 to €50,000. The aim of increasing the general weekly income disregard for a couple by slightly more than that for a single person was to ensure that carers would not be unfairly impacted by their partner’s income. These are the highest income disregards in the social welfare system. They mean that, in the case of a couple, earnings of up to €41,500 per annum are disregarded.

Last year, in my third budget in the Department, I increased the weekly carer’s payments by €12, which was the largest increase in the payment since the mid-2000s. I also put in place a range of lump-sum payments to support carers, including a double payment in October, a €500 lump-sum payment for carers in November and a further double payment at Christmas. In addition, carers also received the €200 spring lump-sum payment made in April. The value of those four lump-sum payments in the six months between the end of October 2022 and April 2023 is close to €1,200 and is a significant intervention to support our carers with the cost of living.

I am not opposing the Labour Party motion. I have looked through the various asks, including that I increase the carer’s support grant to €2,000, increase the weekly carer's payment by €25 and increase the means limit to €1,000 for a couple and €500 for a single person. I will be very honest. I would love to do all of those things but the issue for me is when it comes to budget time there will be a limited pot of money available and I will have to plan on the basis of how we can ensure maximum benefits for vulnerable groups across the social protection system, whether carers, pensioners, people with disabilities, lone parents or others.

I will touch on a few wider issues raised in the motion. It is important to understand that the job of the social welfare system is to provide people with a basic level of income.If we are to pay carers properly for the huge work they do, the Department of Health has a role here. The reality is that if families' carers were not doing the work, a lot of these people would be in State care. No matter where I draw the line in terms of the means test, there will always be some people who will fall down the other side and will not qualify. The person I always think of is the mother who has to give up her job to care for a severely disabled child. Then, because her husband works, she will not qualify for payment.

I know some of the carers' groups would like to see the means test abolished altogether, but if you go down that road, it will no longer be a social welfare payment. In cases where somebody has to give up their job to care for a person with high dependency who would otherwise be in State care, it is absolutely reasonable that the Department of Health or the HSE would provide a payment once the medical need is satisfied.

I want to speak briefly on the domiciliary care allowance payment, which the motion also touches on. There are currently 51,978 families in receipt of this payment in respect of 58,213 children. This represents an increase of almost 27% in families and of 30% in children in the past five years. In acknowledging the financial burden that the families of sick children face, I have made significant changes to the domiciliary care allowance payment over the last two years. The period during which domiciliary care allowance can be paid for children in hospital was extended from three months to six months. With effect from January, domiciliary care allowance is available for babies who remain in an acute hospital after birth for a period of six months. During both of these extended periods of eligibility and where other conditions are met, a carer may also receive carers' allowance or carers' benefit and the carers' support grant. The monthly payment was increased by €21 to its current rate of €330, which was the first increase to the monthly payment in more than a decade. I note the motion calls for the domiciliary care allowance payment to be raised to the age of 18.

My Department has committed under the roadmap for social inclusion to develop and consult on a strawman proposal for the restructuring of long-term disability payments. The strawman also intends to simplify the system and take account of the issues raised in the context of the Make Work Pay report, the Pathways to Work report and the findings of the Cost of Disability in Ireland report. Work on the strawman is at an advanced stage and I expect to bring it forward for publication shortly. I intend to carry out a wider consultation process on reforms to long-term disability payments, including domiciliary care allowance, with all stakeholders and advocacy groups following publication.

In relation to the pension for carers, and in acknowledging the important role that family carers play in society and supporting carers in that role, I am committed to providing a pension for carers. I announced a series of landmark reforms to the State pension system in September. These measures are in response to recommendations by the Commission on Pensions and represent the biggest ever structural reform of the Irish State pension system. One of the most important reforms agreed by the Government is an enhanced State pension provision for people who have been caring for incapacitated dependents for more than 20 years. We will do this by attributing the equivalent of paid contributions to long-term carers to cover gaps in their social insurance contribution record and by establishing a register of family carers for this purpose. My officials are currently working to implement the reforms, including the drafting of legislation and the development of administrative and IT systems for implementation by January 2024.

A number of other issues were raised with me here. Regarding young carers, who I know make huge sacrifices, we provide €980 in funding under the Dormant Accounts Fund. Some of the issues that have been raised this afternoon are outside of the remit of the Department of Social Protection, but I will raise them with the Minister for Health, Deputy Stephen Donnelly, who has responsibility in that area. The programme for Government commits to delivering a carers' guarantee to provide a core basket of services to carers across the country, regardless of where they live. New funding of €2 million was provided in the budget of 2021 under the national carers' strategy. Some €1.9 million of this funding is being channelled through Family Carers Ireland, while the remaining €100,000 is supporting the development and delivery of online supports. The Department of Health met with Family Carers Ireland on 6 July and undertook to consider the carers' guarantee request for additional funding of €3.1 million.

Also, reference was made to the referendum. On 8 March, the Taoiseach and the Minister, Deputy O'Gorman, announced that a referendum will be held to amend the Constitution as recommended by the Citizens' Assembly on Gender Equality and the special Joint Oireachtas Committee on Gender Equality. An interdepartmental committee chaired by the Department of Children, Equality, Disability, Integration and Youth was then established to further examine and advance these recommendations. The interdepartmental committee is now working on policy proposals which will be brought forward for consideration and decision by the Government shortly. We will be in a position to update further at that stage.

I want to thank Senators again for raising this matter. We have done a lot to improve supports for carers within the social welfare system. I can assure them that carers will be a priority for me again in this year's budget.

Mark Daly (Fianna Fail)
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Before I call on the next Senator, I thank the Minister for coming into the House and the Labour Party Members for their motion, as well as the sentiments behind it. I also welcome the members of the various organisations and the carers themselves, who are present. They are representatives of the tens of thousands of carers around the country who simply cannot be here because of the very important work that they do. Go raibh maith agaibh.

Emer Currie (Fine Gael)
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I thank the Leas-Chathaoirleach and I thank the Minister for her response to the motion. It has been very useful. She covered a lot of the issues or questions that have been asked. She is giving us food for thought. I also want to thank the Labour Party for tabling this motion. It is an excellent motion and there is also some overlap with some of the work we have been doing with the women's caucus on the care economy. We were hoping to have an all-party motion on that. There is a lot of overlap with this.

The Minister mentioned that she automatically thinks of the women who have given up work to look after a disabled child. Where do we primarily meet those women? We meet them on the doorstep when we are canvassing. The reality is that this is probably one of the most important topics that we talk about and that we are focused on today. Yet, a lot of these people feel invisible and are incredibly lonely. However, when I meet with carers, I am so impressed by what they give to their families and society. I often feel they could rule the world themselves with the proposals and the suggestions they make. I am glad they are getting a focus today.

What do they raise?They raise very practical issues. The Minister has reflected on some of them in her response. The domiciliary care allowance application form is a 20-page document. I have raised the issue with the Minister before. It might be the first time a parent or carer has sat down and gone through just how difficult it is to make ends meet and how challenging it can be to make sure that everyone's needs are taken care of. It can be traumatic for people. Looking at the figures on appeals, I ask the Minister to look at the process and see if there is anything that can be done to make it easier on families. For example, perhaps a threshold could be introduced at which applicants will be provided with the allowance. The feedback that I get is that it is traumatic to fill out the 20-page application. People might need assistance from their wider network of friends and supports to know how to answer the questions.

In relation to the carer's allowance, I wish I had spoken before the Minister. It would be a lot easier without having to take on board everything that she said. The allowance is out of date. We are living in a completely different time, 33 years later. The restrictions on the 18.5 hours of work or education is coming up as a barrier for people. How do we ensure that we are providing access pathways to carers for education and work? We are short of therapists, including speech and language therapists and occupational therapists. Perhaps we can look at providing pathways into courses for the carers - who are women, primarily - who have given up their careers to look after their children and are working with them on a daily basis. I know the Minister for Further and Higher Education, Research, Innovation and Science has looked at ways of changing pathways into education in general. I am aware that it is going to be very difficult to look at the overall budget and what can be done for carers, but at the same time, it may be part of a trajectory. Family Carers Ireland has called for a trajectory that we can follow. The idea of a participation income is a very good one but I do not want to see the responsibility removed from the Department of Social Protection. I think there is a big degree of trust between carers and that Department, and the work that she has done. There would be a reluctance for the responsibility to change but at the same time I hear what is being said about the contribution that the Department of Health should be making to this. It should not just all be the responsibility of the Department of Social Protection. If the Department of Health needs to stand up and contribute to this, it should. As I said, from speaking to carers I know how much they trust the Minister's Department. Government spending on social protection schemes and public services has increased from €8.8 billion in 2019 to over €10.6 billion in 2023. That is an increase of 21%, which is highly significant. I am very grateful for all the updates the Minister has given us in relation to pensions and the referendum.

I also want to mention the Work Life Balance and Miscellaneous Provisions Act 2023. Hopefully, that legislation will help people who want to stay in work but need more flexibility as well. I thank the Minister for the work she has done. It was good to hear a summary of all of that work. I ask her to remember the people we meet on the doorsteps, and look at what we can do to support them.

Annie Hoey (Labour)
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I welcome those in the Gallery from Family Carers Ireland and the people this motion is for and about. As has been referenced previously, obviously, not every carer can be here today because they have caring responsibilities. I thank Senator Ardagh for her contribution. Sometimes, in here, you get a moment where you see the reality of our lives behind the cameras and all the things we do, and we realise that people have complex lives and go through difficult times. Sometimes, they share that with us. I thank Senator Ardagh for sharing the experience of caring and for highlighting the responsibility involved. I have spoken a little about my own family's experience. Caring takes an enormous toll on you. Whether it is a short period of caring for a loved or perhaps a lifetime of caring for someone, it weighs on your shoulders in a way that I think people who may have not experienced it are not aware of. You feel that weight on your shoulders all of the time. Some people have talked about respite. Even when those caring responsibilities are gone, for whatever reason, and you are no longer caring for a person, it takes a long time for that weight to come off your shoulders. You constantly feel it and you constantly feel their presence. I thank Senator Ardagh for talking about that.

We have home care services because we want people to be able to receive help, social and professional care in their home. That is a really important thing. Senator Pauline O'Reilly talked about how we have quite a high number of carers here in Ireland. The benefit of that is that people get to be in their homes, with their families and they get to be cared for within that unit. Of course, the other side of that is the cost to the individual doing the caring. There is also the flipside for the State. There are over half a million carers. That is a lot of people to consider if we plan to move their work into a State-paid system. Half a million people are doing what is, for a large number of them, unpaid work. They are doing an enormous amount. The Family Carers Ireland State of Caring 2022 report stated that the lived experience of those providing informal care shows that carers experience significant poverty, loneliness, social exclusion and reduced physical and mental health without access to central supports. Those are hard things to hear. The Minister has outlined a number of measures her Department is taking. I hope that perhaps what we are putting forward will be seen as a bolster to what we can really offer carers. Of course, there are carers who are not the carers we traditionally think of. They may be family carers or foster carers. We have spoken previously about children who are carers. That is something we really need to think about. I have spoken to some of them and they are children under the age of 18 who are carers for a family member or have become de facto carers for a sibling. It is hard to hear about the impact that is having on them, on their education, their sense of well-being, their growth and future prospects. It is something we need to think about. We have not fully interrogated the issue of child carers yet, the level we have in Ireland and the impact that is having on them.

Like many Deputies and Senators, we met representatives of the National Federation of Voluntary Service Providers last week. Last year, the federation highlighted the fact that over 1,500 people with intellectual disabilities were living with family carers over the age of 70, more than 450 of whom were living with family carers over the age of 80. We must think about the burden that that is putting on people who perhaps need care and support at home themselves, yet they are still caring for loved ones. Many people with intellectual disabilities and autism have a need for residential support and there is no pathway to access this. Budget 2023 provided just 43 places to address emergency needs. I hope that that number will rise drastically in the next budget. I am not going to go too much further into this. Our motion is reasonable. We are asking for a small amount that we believe will make a really significant difference to people.

Fiona O'Loughlin (Fianna Fail)
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I welcome the debate and appreciate the Senators’ having put forward the motion. In many ways, as the Minister will be well aware, carers are the backbone of this country given the care and support they provide for their loved ones. As that takes a huge toll, the Government has an important role in supporting carers to give the care they want to give. There are many cases where that care can become a huge burden, and there must be supports to ensure that does not happen, such as through respite or a proper carer's allowance. I acknowledge all the work the Minister and the Department have been doing, and it is certainly good to see the various schemes that are in place. About 120,000 carers benefit from regular income supports, which are very important.

Nevertheless, we need to reconsider the means testing of carers, an issue I raised at our Fianna Fáil budget discussion with the Minister for Finance and the Tánaiste. Many people who do not qualify because of the means test have given up their own employment because they had to, and family and family income suffer because of that. To give a case in point, about which I might speak privately to the Minister after the debate, one lady on whose behalf I am working had to walk out of work halfway through the day because her mother had had an accident and had become incapacitated, so she had to bring her to her home. What is more, the lady’s sister has an intellectual disability, so she also had to come to live in her home. In such an example, where there is only one source of income but two new people have been added to the family, it is very difficult for a number of reasons. The loss of income is a huge problem when two additional people need care and support, and there is also a financial burden. Such cases reflect the lived experiences of carers and show how any of our lives can change overnight as a result of something happening.

It is generally said that carer's allowance is a support for carers on low incomes who live with and look after people who need full-time care and attention, but I think that is wrong. The care element should not dictate the eligibility or the allowance. Regardless of the income that comes into a home, Government support in the form of the carer's allowance is very important. It should not be that people on what is often just an average wage or salary are considered ineligible despite providing care for a family member, whether that is a parent, a sibling or a child. That is crucial.

From the perspective of the women’s caucus, we are looking forward to having debates in the Dáil and Seanad soon after we return from the recess regarding the national carers' strategy, which, as the Minister will know, has not been updated since 2011. The present strategy relates just to family members but there are also a lot of professional carers, who are very important in the scheme. It needs to be updated to reflect that and to cover the many types of support mechanisms that are needed. I appreciate respite does not come within the Minister's remit but, as I raised at our party's budget meeting, we need to have more funding for respite. While staff are one part of it, physical buildings are also very important. Families are really struggling and are at the end of their tether. For example, in the case of the family I mentioned earlier, they have had only one respite session of two days in the past three months and they got the call about two hours before it was to happen. There needs to be regular and consistent respite, but it also needs to be prearranged and organised and everybody needs to feel comfortable about it, not least the person who is receiving the respite, in order to be prepared for it.

I fully acknowledge the work that is being done, but we need to look at ensuring the carer's allowance will not be means tested. Carers should get more than they do at the moment. I would appreciate if the Minister would take that into consideration in her Department's negotiations in advance of the budget.

Marie Sherlock (Labour)
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I thank the Minister for her reply and thank everyone who contributed, namely Senators Ardagh, Burke, Boyhan, Pauline O'Reilly, Wall, Hoey, Currie and O'Loughlin. I again thank Family Carers Ireland, representatives of which are in the Gallery. Baby Willow was with us for a time and Snowflake, the support group in north County Dublin, was hoping to be here too.

We are grateful to the Minister for not opposing the motion and for supporting elements of it. We very much welcome the restructuring of the long-term disability payments and, in particular, the consideration of bringing the domiciliary care allowance to the age of 18. There is no doubt there has been an expansion in the take-up of the carer’s allowance and the domiciliary care allowance over recent years, but judging by the figures, there is an element of running to stand still. The Minister quoted census figures going back to 2015. There has been a 53% increase in the number of those identifying themselves as being in unpaid caring roles. When we look at the numbers that find themselves as carers relative to those who are taking up carer's payments, we see that we are running to stand still and that there remains a large number of people who should qualify for something but do not because of the means test.

Senator Ardagh’s account of her own experience was a reminder to all of us that, notwithstanding the fact people might have jobs, supports and perhaps services around them, what the carer of a child with additional needs or of an adult with a long-term disability has to go through day in, day out is something the rest of us will never fully understand, but it is something we absolutely need to support in as many ways as possible. The Senator referred to the low-hanging fruit. To me, there are basic reforms that do not cost a lot of money but would open doors for those who find themselves in caring roles. I know of a lone parent who also a carer to her autistic child.She is in receipt of the carer's allowance and wants to take up a course. That course is for 20 hours per week and her child is in school for 25 hours per week. However, because the rules of the carer's allowance state a person may not take up anything that goes beyond the 18 and a half hours per week, she is excluded from trying to give herself a chance in life. Will the Minister please look at those rules? They need to be reformed to allow people to take up part-time work, or indeed an education, so they can give themselves a chance. One of the other Senators mentioned this is not something parents must live with for two or three years before it goes away. Instead, they are living with it to the end of their days. They must be given a chance to try to make a better life for themselves and their families.

On the carer's allowance, our motion clearly supports the calls of Family Carers Ireland and we call for a pathway to abolishing the means test. The Minister talks about increasing the earnings disregard but in reality, €41,500 is below what average earnings are for an individual. Given that sum is for a household and refers to gross rather than net income, it is not in any way an appropriate level to try to include those who are in caring roles. We need to recognise there is an individual - it is usually the woman but it could be the man as well - who is having to step back and make a sacrifice in terms of his or her own earnings and career in order to take up a caring role. We must look at that earnings disregard and ultimately set a pathway to the abolition of the means test. I heard what the Minister said about the Department of Health having to play a part but there are two aspects here. First, we can say if carer's allowance is no longer to be means tested then it should not be the Department of Social Protection's problem any more. Alternatively, we could take a different approach and ask the Minister to champion, within the Government, a place for carers in order that they do not have to face that means test. There are many payments or services that happen to fall under the remit of the Minister's Department. I am thinking, for instance, of the registration of birth. The Department decides the policy and the Department of Health and the HSE actually undertake the registration. Thus, there is much crossover between Departments. As the Minister for Social Protection with responsibility for the carer's allowance, our ask is for her to champion within the Government a pathway to abolition of the means test.

I have two last things to say. I refer to the domiciliary carer's allowance, DCA. Senator Currie spoke about the pages people have to fill out. A mother of an autistic child told me it is the most upsetting form she has ever had to fill out. There is a Facebook group called DCA Warriors. These are autistic mothers having to help other mothers and fathers fill out those forms. We must have reform of the application system to make it easier.

I have a final thing to say, with the Acting Chairperson's indulgence. There is an urgency now with the supports we provide to carers. We are all only too aware of the crippling shortages out there with regard to services and therapies within the health system. As Minister for Social Protection, I am sure the Minister could ask why that is her problem, but carers are having to take a disproportionate share of the caring responsibility because the services are not there. That problem is not going to be fixed overnight. The recruitment process for all those who need to be brought into the health system is not going to happen today, tomorrow or next week. It will have to happen over months and years. It therefore falls on the Department of Social Protection to ensure we put in place supports for carers, because they are living day in, day out with the reality of those services not being available and of having to shoulder the responsibility of looking after their loved ones.