Skip to main content
Normal View

Joint Committee on Social Protection, Community and Rural Development and the Islands debate -
Wednesday, 11 Oct 2023

Report on Participation Income for Family Carers: Discussion

Good morning. Members participating in the meeting remotely are required to do so from within the precincts of Leinster House only. I remind all those in attendance to make sure that their mobile phones are switched off or on silent mode.

I welcome the witnesses. I wish to point out that they are protected by absolute privilege in respect of the presentations they make to the committee. This means they have an absolute defence against any defamation action for anything they say at this meeting. However, they are expected not to abuse this privilege and it is my duty as Cathaoirleach to ensure this privilege is not abused. Therefore, if their statements are potentially defamatory in respect of an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative they comply with any such direction. Witnesses are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against any person or entity by name or in such a way as to make him or her identifiable, or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity.

Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against any person or entity outside the Houses or an official either by name or in such a way as to make him or her identifiable.

On 18 May 2022, we heard evidence at this committee from three family carers, namely, Ms Anna Budayova, Ms Niamh Ryan and Mr. Damien Douglas, on their day-to-day challenges. We heard powerful evidence from Anna, Niamh and Damien on providing full-time care to their disabled children. They spoke about the impact the carers' allowance means test was having on them, their families and their caring roles. Their words made it crystal clear to all of us why we must work towards a financial support system for family carers that is designed around the care that is given and not how much is in the bank account of the husband or wife of the full-time carer. That evidence clearly indicated that the current eligibility test for the payment is little more than a means test, denying people financial assistance to support them in providing such vital services to our society.

Therefore, when the committee was presented with the report commissioned by Family Carers Ireland, which put figures on how this means test could be abolished, we were very anxious to facilitate a formal hearing. The report, Towards a Participation Income for Family Carers, is based on research conducted by the department of sociology at Maynooth University. The recommendations developed from this research focus on what needs to be done to advance a new model of income support for family carers. The report has recommended that we move away from a means-tested approach to the carer's allowance and instead focus on the need for and provision of full-time care. The study believes that the Department of Social Protection is in the best position to administer such a scheme, which would be known as the carers' participation income, and would do so on behalf of the Departments with responsibility for both older people and people with a disability. The study envisages the introduction of this non-means tested participation income for family carers by 2027, with the establishment of an implementation group reporting to the Cabinet sub-committee on social inclusion in the short term to examine, first, the existing and future processes of administering care payments and, second, the methods of proving eligibility of medical care need and the provision of that full-time care. This outcome of the research builds on the previous recommendations of the National Economic and Social Council, NECS, and the Oireachtas Joint Committee on Gender Equality, which proposed that a participation income be established for care work. Participation income is when people are paid not for doing nothing but in exchange for an activity that is useful for society as a whole.

The recommendations in this report were endorsed by the committee and included in our pre-budget submission. While the committee welcomes the increases in welfare payments in yesterday's budget, we note that they fall short of what the committee believes was the minimum increase requirement of €20 per week in all basic welfare payments to address the 16.15% increase in headline inflation between 2022 and 2024. However, members wish to note the ongoing commitment of the Minister for Social Protection, Deputy Humphreys, to work with the committee to address the need to improve supports for family carers. We have incrementally done so since the committee was established in July 2020. Only last month, the committee commenced pre-legislative scrutiny on the introduction of an enhanced pension provision for long-term carers of incapacitated dependents in line with the committee's recommendation to adopt the proposal of the Pensions Commission. As a committee, we will continue to work with the Minister to ensure that the recommendations in the report are incorporated into Government policy.

I welcome Dr. Nikki Dunne, Ms Emily Thyne, and Ms Catherine Cox, Family Carers Ireland, FCI; and Professor Mary Murphy, Dr. Pauline Cullen and Mr. Shane Gough, department of sociology, Maynooth University. I invite Dr. Dunne to make her opening statement.

Dr. Nikki Dunne

I am grateful for the opportunity to speak with the committee this morning. I am the research manager with Family Carers Ireland, the national charity dedicated to supporting Ireland’s 500,000 family carers. I am joined by my colleague, Ms Catherine Cox, head of communications and policy at FCI, and Ms Emily Thyne, who cares for her son, Malachy. We wish to acknowledge and welcome the work of the committee, particularly in its efforts to better recognise and improve supports for family carers. FCI has repeatedly called for an overhaul of the carer's allowance scheme, which was first introduced 33 years ago. We believe it is now an outdated model that undervalues care work and is completely inadequate, particularly with the cost-of-living crisis. We, therefore, warmly welcome the recommendations of the committee to increase the carer’s allowance income disregards and work towards the full abolition of the means test and the possible introduction of a participation income for family carers.

In early 2024, Ireland will hold a referendum on equality and care, as recommended by a citizens’ assembly and the Oireachtas Joint Committee on Gender Equality. If successful, the new Article 41.2 will enshrine the value of care work in the Constitution and oblige the State to take reasonable measures to support carers. Additionally, both the citizens’ assembly and Joint Committee on Gender Equality made recommendations on the reform of carer’s allowance, with the latter specifically recommending that consideration be given to the potential introduction of a participation income that acknowledges the contribution carers give to society. With these recommendations of both the citizens’ assembly and the joint committee, and a referendum on care just months away, we believe now is the time for fundamental change in how we recognise and compensate family carers. We believe it is time to begin to transition from the outdated means-tested carer’s allowance scheme and work towards a more equitable and gender-balanced scheme for carers, one that reflects the reality of contemporary caring relationships and families today and that values and fairly compensates the immense contribution made by carers as well as the State’s reliance on them.

This ambitious change requires the Department to approach its categorisation and assessment of carers in a new and progressive way. We believe that the ambition, motivation and political will exist to achieve this. We are delighted to have been partners on this research project with Professor Mary Murphy, Dr. Pauline Cullen and Mr. Shane Gough from Maynooth University. We are grateful to the Irish Human Rights and Equality Commission, IHREC, for funding the research, which demonstrates how the introduction of a participation income for family carers is a feasible alternative to the outdated means-tested carer’s allowance. Professor Murphy will present the findings and recommendations from the research, but first, Emily will speak about her experience of accessing carer’s allowance. I thank the committee for the invitation today. My colleagues and I are happy to answer any questions members may have.

Ms Emily Thyne

I thank the committee for inviting me along today and for letting me talk to members about my circumstances. I am a full-time carer for my son, Malachy. I would like to be clear that I am speaking not only for myself but for the many others who are in a similar caring role. I have been receiving carer’s allowance since around February 2022, although I had started the application process in October 2021, when the country was just making its first tentative steps to come out of lockdown. My industry, unfortunately, was one of the worst affected. I was a freelance violinist. My last concert was in the Bord Gáis Energy Theatre and it was the first concert the National Symphony Orchestra played in front of a live audience since lockdown had started a year and a half before. I had been receiving the pandemic unemployment payment since its roll-out, but that had stopped and started a number of times due to the nature of my work. Between that, and being freelance, I did not fit neatly into any boxes regarding income and tax. I was registered, as all freelancers are, as self-employed, but that in itself implies I was running a business and generating my own work. I had to explain countless times that I was hired by other people through plain old word of mouth and, I might add, for being good.

At first, I spent a lot of time on the phone to Citizens Information, trying to get my head around how to apply, and I spent a lot of time printing forms. Then there was the endless amount of information needed to prove everything: doctors’ certificates stating Malachy’s condition and how disabled he was, what he could do and what he could not do. Then there were two years of bank statements - my bank charged me €2.50 per page for that - and six months of statements for savings accounts, credit union, my partner’s current account, even his Revolut account that he only uses for the sharing of buying coffees with colleagues at work.

After our finances were scrutinised, the hours I spend caring for Malachy were then picked apart. I had to explain that yes, he does go to school; yes, my partner comes home by 6 p.m. most days; yes, he is mostly around at the weekends; and we have friends that take Malachy now and again for respite.

It felt like all the focus was on the time I had to myself rather than the time that I had to spend caring for my son.

When I finally received my first carer's allowance payment, I was relieved. It felt like I had won a prize. However, reality has now kicked in. I looked up the minimum wage the other day, just out of curiosity. It is €11.30 per hour for 2023. I calculated that if I worked an eight-hour day, seven days a week - eight hours is about right for school days but weekends and holidays are more like 12-hour days with no breaks - I am getting paid a little over €4 an hour to care for Malachy. I thought about it for a while and I realised that at least I am getting paid, which is great. I have a friend who cares full-time for her profoundly disabled son but who receives no carer’s allowance simply because her husband earns too much money. I can relate to this in some way as when I was being assessed it was noted that we had some savings. I had to point out that because of my husband’s fairly average salary, we would perhaps not be eligible for the full housing adaptation grant and so would have to use every last penny of our savings to adapt our three-bedroom mid-terrace house to accommodate a downstairs bedroom and bathroom.

So here we are, me with my €4 an hour and my husband with his average salary. He cycles 30 minutes each way in to work and home again, with leftovers from last night’s dinner in his bag for lunch. We have one car. I do the household shopping and I put fuel in the car. I supply the kids with clothes and shoes, stationery, occasional treats and all the stuff that kids need. Nearly every week I have to ask him for financial top-ups, while he is trying to keep his bank balance healthy so that when we go to the bank to ask for a bigger mortgage for the build, the officials will not laugh in our faces. Malachy is seven. He is non-verbal, PEG-fed and is only now beginning to walk. He has a full range of behavioural difficulties. They call it severe developmental delay; I call it extreme parenting. To be fair, when he is in a good mood he is great craic and very loveable, but when he has a meltdown he can get into such a heightened state that when I try to soothe him, he lashes out at me with fists or fingernails. Our other kids’ lives are also hugely impacted. They have less of our time, there is less money and there is very little downtime for any of us. Malachy will never be independent. We will never buy him a housewarming present. We might always need to feed him and change his nappy. There is no retirement then. As carers, we live with that every day, for €4 an hour. Many do not even get that, due to the means test. I thank members for listening.

I thank Ms Thyne for presenting her evidence. I invite Professor Murphy to deliver her opening remarks.

Deputy Marc Ó Cathasaigh took the Chair.

Professor Mary Murphy

I thank Ms Thyne, Dr. Dunne and Ms Cox, and acknowledge the work that we have done collectively to advance this report. I welcome the opportunity to discuss it here today and thank the committee for the invitation to do so. We discussed it in the audiovisual room in June. Since then, the Irish Human Rights and Equality Commission, IHREC, has published a policy statement on care in which it approaches care in quite a broad sense, as we do as feminists, by insisting that care means both caring for people and caring about them, not as a burden but as a feature of our mutual interdependence and reciprocity. IHREC has very much chimed in with the recommendations of the report and has recommended very clearly in its report that we should establish a participation income. That builds also on proposals from the National Economic and Social Council, NESC, in its 2020 report entitled The Future of the Irish Social Welfare System: Participation and Protection. There is a body of analysis, research and advocacy working towards that. As Dr. Dunne mentioned, the context of the commissions on pensions, tax and welfare, Sláintecare, the citizens' assembly, the Oireachtas Joint Committee on Gender Equality and the forthcoming referendum all speak to gender, care and family in various guises. We see this as part of that context of opening up this debate. Likewise, the report addresses Census 2022, which outlines the demographic changes that we are facing into and the shifts in dependency ratios that will put more pressure on society, families and communities, and particularly on women in relation to the care needs of a shifting demographic. Without policy shifts, that is likely to reinforce the gendered care inequalities that we see at the moment.

One thing I want to make really clear is that we are arguing for a very innovative and reimagined approach to welfare, but we also see the value in constructively building on existing welfare policy where it is useful and where it values care.

There are aspects where it does. There is the new pensions policy shift to carer's credits being augmented, the current policy of including a half-rate payment for eligible claimants to carer's allowance and a 1.5 social welfare payment for those caring for more than one person. We welcome those measures and build them into the proposal as we go forward. Generally, what we are highlighting - and we produce more evidence aligned with the personal testimonies of people like Ms Thyne - is the poor capacity of carer's allowance to recognise, value, reward and redistribute family-based care work. We are saying that we have really reached the ends of our capacity to use carer's allowance as an effective method to do that.

The research was trying to use a feminist methodology to examine what proposals we could develop to replace carer's allowance as a way of socially valuing family care work. Key to the feminist methodology is respecting and learning from different types of knowledge and really listening to the voice of people experiencing the issue in the research. It is also about making sure that we do not reinforce particular narrow care hierarchies, that we keep a broad definition of care, and that we are very mindful that people are always active agents in their own lives. Most people give and receive care at some different dimension of their lives. In any kind of research, you do a literature review. We did that, looking at academic and policy literature, feminist literature on value and care, international comparisons of how care is valued and an analysis of social welfare approaches to valuing participation. We then conducted a round of qualitative interviews with unpaid family carers which tried to get at their experiences of trying to access the carer's allowance, some of whom were successful in accessing it, some of whom only accessed a limited amount due to means testing and some of whom did not access it at the end of the day because of the way the means test worked. We unearthed quite a lot of information there about the experience of carers trying to navigate a really complex and demeaning system. We developed a straw man proposal about a participation income that could replace the means-tested carer's allowance. We conducted a process called merging of knowledge, where we invited different stakeholders, including family carers, NGOs, civil servants involved in the policy design and implementation of carer's payments, academics and policy analysts, to engage with the straw man proposal, tear it apart and put it back together again. That informed us developing a fuller proposal for a participation income for family carers, which we then put a timeline on implementing. That is what we want to talk to the committee today.

The qualitative interviews really did highlight the personal and social impact of care, the low income people are living on, the dependence that they have on the welfare system, the devaluation, the exhaustion, the depletion of their resources, exactly as Ms Thyne has discussed, having to run down the meagre family resources in order to get to the bottom. They also highlighted the difficulty of navigating the bureaucracy and administration of the welfare system and carer's allowance, and how complicated, invasive and intrusive it is. The requirement of assessing family income was seen by many women, in particular, as not recognising their own independent need. The requirement for reassessment if there is any shift at all in the family income was seen as particularly soul-destroying. The amount of form-filling and repeated requests for the same information from different aspects of the State all added stress to the already-stressed lives of carers who are really fighting for survival a lot of the time.

Our sense, at the end of the qualitative research and from the literature review, is that care work and the role of the family in providing care is largely invisible in our understanding of how society and the economy works. We feel that if we could reimagine the welfare payment it would be a way of making that care work more visible and of giving us a different understanding of where care needs to sit in the policy system. The individual right to care income is a core part of that. Having an individual's right to the payment really does involve not going through a household-based means test. It involves having to engage with the question of whether there should be a means test right from the start.

In advancing the proposal, we looked to work already done in the academic literature on participation income, which is not a new idea. It was first brought into the literature in 1995 and is now quite mainstream as part of debates around income support. It is called a conditional universal income and the idea is that it will be more broadly accessible to people because there will not be a means test with it, but there will be conditions about who can get it based on their care obligations and the care work that they are doing.

It is not a free-for-all in terms of the means test being taken away and it being opened to a wide range of people. There would still be a stringent level of conditions that would narrow the range of people able to access it. There are various ways of designing it. There are nuanced trade-offs between the adequacy, breadth and depth of the payments and those trade-offs in the design will ultimately determine the cost. When we drew up the straw man proposal, we got the participants in the merging of knowledge process to consider issues such as entitlement, eligibility, adequacy, how it would impact on gender equality, the principles of reciprocity and conditionality, political feasibility, institutional capacity to implement a new payment, which Department should do it and that type of thing. It was clear in discussing it that people recognised two things are also needed. First, there is a need for supportive institutions. Much of the social isolation of carers and those being cared for relates to a need for an underlaying support network of institutions to break the social isolation and give them support, but also services. It came out loud and clear that no matter what kind of income support a person has, if it is not accompanied and complemented by an adequate provision of services in respect of health and social support needs, it will never be adequate. The idea of services being the primary mechanism of meeting people's care needs is important.

The merging of knowledge exercise allowed us to advance the proposal for the payment to a more definitive range but we recognised we were not in a position to do full equality proofing and impact assess the proposal more fully. We were, however, able to get the proposal to a stage where we could get basic costings on it. The costings are important in this context. The Parliamentary Budget Office carried out analysis in respect of the maintenance of an income support such as a participation income but the retention of some level of an income test in order to preclude its availability to relatively wealthy families. We costed €100,000 as an example of a quite high income threshold that would rule out the payment being available to those families deemed to be relatively well-off and found there was only a €10 million difference in the costing between that scenario and completely abolishing the means test. Completely abolishing the means test at a cost of €10 million gives savings in administrative cost and a plethora of advantages in terms of knocking out the demeaning form-filling, assessment and reassessment procedures and all the things families were saying were soul-destroying. For only €10 million, one gets a significant amount of worth in terms of the advancement of a universal payment. At the rate of carer's allowance that was in place before the budget announcement yesterday, the costing we had for that universal payment was €397 million, which is relatively affordable in the context of the overall budget announcement, for example. The dynamic costs might include behavioural changes, such as people adjusting their behaviour in the labour market or their caring activity should the payment change. We were not able to estimate those costs. We were only able to do a static costing based on the information we and the Parliamentary Budget Office had at the time. More work would need to be done at implementation and design stage but, right now, we can confidently state that switching the present carer's allowance from a means-tested payment to a universal payment and maintaining the same range of rules and conditions with regard to eligibility from a care perspective would cost €397 million and it would be very good value for money to do that. It would effect a range of possibilities and very usefully open up the way we can support care.

In saying that, we had four main recommendations. The obvious one is that maintaining the good features in current carer policy but primarily abolishing the means test on carer's allowance would enable us to reimagine a different approach. It is clear the adequacy of that payment is an issue. Recommending it at the present payment means recommending a relatively inadequate payment, as the Cathaoirleach stated. We note, however, that the Commission on Taxation and Welfare recommended a benchmarking and indexation income adequacy process and we believe that is the place for the adequacy issue of the future of participation income for family carer's payment. In the context of our recommendations, many of the issues relevant to form-filling, assessments, the soul-destroying process and the difficulty in navigating the payment will remain if we adopt the main procedures used to assess eligibility for carer's allowance.

There is a need to take a hard look at the navigational issues people experience in working through the process of determining eligibility based on medical and care needs, rather than on the money eligibility, which we argue would be gone. A navigation working group is needed to finesse and iron out some of those issues but the overall issue should be advanced by an implementation group reporting to a Cabinet committee on social inclusion. We recognise that in the budget yesterday, a group incorporating the Departments of Social Protection and Health was announced to look at issues relating to the means testing of carer's allowance. We see that very much as the potential implementation group we recommended in the research. We argued in the research that the group should advance with the principles of merging of knowledge and co-production, where the voice and experience of carers, NGOs working with carers, academics who have studied the issue or carried out policy analysis and civil servants implementing it would be involved in the design and implementation. The process should be rich in terms of taking into account the issues for implementation. The timeline for that implementation should begin now. We are pleased the group is to be set up before the end of the year. The payment could be administered by the Department of Social Protection but the ownership of the issue is a health and care issue, rather than an income support one, and probably should be with the Department of Health. The interagency approach is necessary, however, as is a whole-of-government approach. We welcome that the committee is a joint process and recognises that whole-of-government approach. The Cabinet subcommittee for social inclusion is the place to report to and advance the proposal.

By way of conclusion, this is a small piece of research, limited in scale and scope by the amount of funding that was available. As academics, we engaged on a pro bono basis. The research assistant was paid. The funding for the research from the IHREC was very welcome. We are proud to be associated with the research. We see it as a key mechanism to advance a fundamental shift in how we value the issue of care in families and communities. It has great potential but, as the Cathaoirleach stated, it needs to be fleshed out, go into an implementation process and be unpacked. That is why we are here. We want to unpack it now in order to help advance it to the next stage.

I thank the witnesses for their presentations. It is a really important issue. As the Cathaoirleach stated, the committee had carers in last year and that highlighted the difficulty. We get many people coming to my constituency office who are dealing with difficulties relating to carer's allowance and the means testing. It is important work that needs to be done in respect of carers and all means testing and how that works and impacts on people. I appreciate Ms Thyne taking the time to speak to us. She gave an example of the difficulties and intrusion relating to trying to access a simple basic payment of €11 that comes down to €4 if one adds in all the hours of caring. She probably underestimated the number of hours on top of that. Through engagement with people who are appealing a rejection of their carer's allowance application, I am aware of the intrusiveness of the process. It absolutely needs to be addressed.

I have questions relating to the report. What is the overall cost of the means testing? That cost includes those employed by the Department of Social Protection to do all this work. What is the overall cost?

There is another important aspect we need to look at which really upsets people. One section of the report refers to the once-only principle for data gathering and that there may be just one document or one connection with the Department of Social Protection. The important part of this is the "do not review" provision. Many people can find it really upsetting when there are constant reviews on whether circumstances have changed, while knowing from the evidence and from the medical evidence that circumstances are never going to change. That can be really upsetting for people. What can we do on that?

Reference was made to costings. If it was reviewed or abolished the cost would be in the region of €1.2 billion. Have the witnesses ever done a costing for a situation whereby everybody was to withdraw their services in caring for their relatives, which obviously is not going to happen. What would the cost be if the State was to move in and actually replicate that service? Has there ever been a costing done on that? I would say it could be massively more substantial than the €1.2 billion it would cost to remove the means testing.

I appreciate the witnesses taking the time to come and talk to us today.

Ms Catherine Cox

I thank Deputy Donnelly. To answer his last question, we estimate that carers save our State €20 billion every year. That probably takes into account only 37 hours per week - and Ms Thyne spoke about the hours of care - so in fact it could be quite a lot more. The Deputy is right to say that carers are not going to down tools in the morning. Unfortunately, this is taken for granted.

The Deputy also asked the question around the cost of administering the carers' allowance. We put this to the Department previously, but the Department that looks after this payment also looks after other payments so it would be difficult to break down. There is no doubt, however, that there would be less cost involved if they did not have to undergo the stringent means testing that is done.

I will go back to a figure mentioned by Deputy Donnelly of €1.2 billion. Thanks to Deputy Pauline Tully we have had costings on abolishing the means test, as Professor Murphy said. The figure is actually €397 million and not the €1.2 billion the Government had predicted.

Professor Mary Murphy

The academic literature would suggest that the administration of welfare payments adds about 4% onto the welfare budget, which is about €20 billion, so a rough estimate of that cost could be €64 million. One could take it that the carers' allowance is more difficult to administer than the average payment because it is more intrusive so the cost would be greater. In the merging knowledge exercise for civil servants one aspect they looked at was what time would be saved for civil servants if the means test was taken away, what would be added if there were more stringent eligibility testing from the care and the medical side, and whether there would be some trade off there. Definitely, if one were to abolish the 4% of the means testing cost there would still be some eligibility administration costs in it for sure.

Does Deputy Donnelly have further questions?

Professor Mary Murphy

The Deputy referred to "do not review", which is a really important recommendation. It is the very type of recommendation that we believe a navigational group would quickly get to grips with because there are a number of practical things that can be done such as a "do not review" provision. This would make sure that we are taking away the more demeaning, frustrating and soul destroying aspects - as well as the costs - of the administration of the payment as it is at presently. It would also go into a new payment if one did not take it out now. I believe measures such as "do not review" would be seen by the navigation group. Perhaps Dr. Cullen or Mr. Gough would like to come in here.

Dr. Pauline Cullen

Apart from the financial cost there is a whole literature that looks at the notion of the structural burden of what is involved in navigating not just the form filling but also the pressure that is placed upon the carer in a very individual way to record the cost of care and then to communicate that in ways that fit into the bureaucratic requirements. We heard this morning from Ms Thyne on the complexity of care, and certainly the qualitative research revealed this in clear terms. There is an unpredictability to care and there is also a routinised element. It can be very difficult to translate and communicate that information into the kind of bureaucratic metric that is required for assessing carer's allowance.

When we talk about the financial side that is the kind of cost we just need to keep in our minds. It is a cost to the people administering it as well. In that merging of knowledge space we talked to front-line street-level bureaucrats who are involved in that assessment. They did communicate the difficulties they had sometimes in trying to understand and translate that complex equation of care work into the metrics that they were confronted with. They had difficult choices to make sometimes. There is also international literature, particularly in the Canadian case, that talks about the notion of tasking people within the State bureaucracy to work as navigational supports. The work done by Family Carers Ireland is amazing in this regard, along with other civil society organisations. They are working as navigators and trying to be the interlocutors between the carer and the State. There is really good practice there on the systems where they have looked at releasing folks working within the State machinery from that burden of assessing those kinds of metrics to do more useful kinds of work that is supportive. The power of that, to offer a recognition to carers of their worth and value is something that cannot get lost when talking about the costings. That is enormous: the notion that they have worth, that they are recognised, that they are visible, and that the State is responsive and reacting to their needs in this kind of nuanced way outside of the metrics we know are embedded in a very long form. There are other systems, and perhaps Mr. Gough could speak to it as he has looked at this. In the Finnish system there is a four-page form - at maximum - that one fills out. In the Irish context it is multiple forms and multiple documentation. That burden on carers is complex. It is not just time, it is also emotional investment, along with the waiting and the uncertainty. We also do not know how many people cannot face the process, are suppressed and do not apply but who need that support. They cannot face the intrusion or they have difficulty with documents or even with literacy. There is a disadvantaged group of carers out there that are quite minoritised and marginalised who would find that entire process itself very challenging. Then they disengage and their needs are not being met either.

On the funding aspect and if the funding was removed there were two figures for the total cost. The additional costs - as Deputy Tully acknowledged with a reply back from the Department - would be €300 million, bringing it up to some €1.2 billion.

The report referred to other international experiences - it may have been Belgium or another European country. It talked about a setting up a company or a not-for-profit state-controlled company that, essentially, employed people as carers. This meant there was holiday pay, respite and pensions and so on. It is a really interesting idea that the state would take on the role as an employee of people and give them recognition that this is work, and it is people who are doing really important work, first and foremost for the people they love but, second, that this is work that needs to be done to support people.

Mr. Shane Gough

That system is in Austria which is currently running a pilot scheme in the Laendar of Burgenland. The Deputy is absolutely right in that they set up the not-for-profit state company and they set up an employment relationship with carers. They also pay them at the rate of the minimum wage in Austria. There are other systems as well. Dr. Cullen has talked about Finland, the navigational agency piece, and the structural burden on carers. In Finland just in January 2023 they moved all of their social protection systems into what they call "well-being counties". The well-being counties are in charge of social protection, rescue services and hospital services for bigger regions under the municipalities.

They also provide a high level of informal carer's allowance but also a lot of the wraparound supports carers need and help in navigating the system, with much lower levels of structural burden than in other countries.

Dr. Nikki Dunne

I might add a breakdown of that additional €397 million. The PBO has looked at carers who are currently receiving the carer's support grant and used that as a proxy. That is a stand-alone payment where carers still have to meet all the medical and other additional eligibility criteria, except the means test. It is looking at bringing anyone who is in receipt of the carer's support grant but not the carer's allowance into the bracket. It is also looking at bringing into the bracket carers who are in receipt of half-rate and reduced-rate carer's allowance, parents who are receiving the domiciliary care allowance who are not currently receiving the carer's allowance, and carers who have been in receipt of the carer's benefit for two years.

Professor Mary Murphy

One of the immediate benefits is that all carers who are on a reduced-rate payment, if we abolished the means test, would then be on the full-rate payment and that includes the cost of bringing up their payments as well. It is quite a comprehensive cost and it is €397 million, to reiterate the sum.

On employment and the different examples Mr. Gough gave, when we carried out the merging and knowledge exercise, we explored the possibility of having an income support, on the one hand, or an employment support, on the other hand, and both of them could be understood as valuing people’s participation. There is no contradiction between doing them in that way, but we felt the primary step we needed to take, first and foremost, was to abolish the means test and put in place a non-means-tested participation income for family care. After that, there are a number of creative ways of recognising that some people may well prefer to receive their income in the form of a wage and there are options and mechanisms to do that from the international literature and, indeed, from our own experience in Ireland, given we have good experience of active labour market measures as examples of how those kinds of well-being institutions might be set up at a county level, for example. We felt that the first job, however, had to be abolishing the means test and getting us into the next space.

I thank the witnesses for the interesting presentation. There is a lot wrong with the system and it is not just the carer’s allowance. There was an interesting comment earlier about marginalised people applying for the carer's allowance and the challenges of bureaucracy . As members of this committee will know, it is my hobby horse to point out that marginalised people face significant intrusion, whether they are going for social welfare, a means-tested payment or whatever they are going for. People on the disability allowance go through this rigmarole too. It applies to a huge class of people politicians such as us deal with, because we deal with every system where people are means tested, and they tend to be the most disadvantaged in our society. It is well known in this committee that I have a hang-up about means-testing. It is totally iniquitous and unfair and needs significant reform, and I have put a lot of time and effort into trying to bring that reform about.

There are always choices to be made, and when you are sitting on this side of the table, you have to look across. The issues that arise, when we come to disability, illness and so on, relate, for example, to the cost of disability, which is a massive issue, and the means-testing of the disability allowance. I have often given the case of somebody who is born with a difficult disability, such as Ms Thyne’s child. If, when they get to 40 or 50 years of age, please God, someone passes away and leaves them a legacy, they will lose their disability allowance and will never have an opportunity to get the invalidity pension, in a lot of cases. There are huge injustices, and if we try to sort them all out in one year, we will hit the wall because for everything we give out, we have to get the money for it somewhere, and that is taxation.

There is no third way. If we borrow in the short term, we will pay in the long term.

The committee has discussed the issue of means-testing and we are very cognisant of it. The uncertainty of just abolishing it overnight is going to be a huge barrier to any Minister within a Department trying to make progress. When this committee was formed, we proposed in our first budget submission means tests of €500 and €1,000, which would cover a lot of people. If a couple were involved, they would take half the income, so that would amount to €2,000, which is beginning to move up considerably. One of the advantages of going that way, and I would be interested to hear the witnesses' views on this, is that if we increased it incrementally and set it at €1,000, and €500 for a single person, we would need also to reform how issues would be assessed such as a second property, where a capital value is taken on an absolutely farcical notion of value. The same is true if the person happens to have savings and the way they are assessed. In fairness to the Minister, she did improve it and she has done things for the carer’s allowance. She has not done them for all the other means-testing and we are still arguing about that, but it has been changed slightly for the disability allowance as well. The idea of assessing at €4 per €1,0000 is ludicrous after €70,000. There are some aspects, therefore, that need to be reformed.

If we look at the €1,000 we were aiming for, we will then find out what the decrease is in the number of people getting the carer's support grant only. That would give us a much better fix on our next step, if we were trying to get to the point of abolishing the means test, whereby we would be able to assess a little more accurately whether it was worth having a means test for the remainder. It goes back to the old argument about the child benefit.

These look like modest reforms but they involve going inexorably in one direction and, in fairness to the Minister, she has raised the figure twice this term. The other reform that could take place immediately would be to increase the carer's beneift to five years. There is no means test for the carer's benefit. Again, this would give us a figure. Very few people come to my office regarding the carer's benefit, partly because there is no means test and partly, perhaps, because it relates to a demographic that can do their own business with the State. If we extended the carer's benefit to five years and had no means test, we would again get some sense, in a controlled way, of the potential costs and we would move away from the argument of whether it was €1.2 billion or €379 billion, which the big bang theory gives. The public service will always warn about the higher number and that will go to the Department of Public Expenditure, National Development Plan Delivery and Reform, and if any of the witnesses has had experience with that Department or the Department of Finance, they will know they would want to have their arguments lined up because those Departments just look at figures and they do not want something like that. Could the benefit be changed in one go or should we know where the end game is and work incrementally towards it?

My second question relates to what would happen if a lot of money were available and concerns widening the eligibility versus increasing the rate. That becomes a challenge. Everything is finite from the Department's point of view. There are endless demands and it does not matter which Department it is. We can play around with Departments and call it what we want but it is still money and the Department of Public Expenditure, National Development Plan Delivery and Reform does not care what we call it. It is always money. If the witnesses had a fixed sum available to them, would increasing the payment or the eligibility be the more urgent action to take?

I would be interested in getting the witnesses' view on that.

The issue of a working age payment was mentioned. How would that work? Many pensioners receive half-rate carer's allowance because many people are looking after their partners or spouses, doing incredible work for their families, themselves, the people they love and society. We found during Covid-19 that, all things being equal, the State should facilitate people caring at home where that is their choice. I would be interested in the witnesses’ reaction to extending carer’s benefit to five years, as a first step, continuing to increase the means-test threshold and amending the means test in terms of capital. That is a big issue, particularly as it can happen that a person being cared for has suffered a trauma and become severely disabled due to an accident and could, as a result, get a large award that would go against him or her. It can get very practical and technical but we keep coming across these cases.

Medical criteria were mentioned. We had a big debate and found recently that the means test is relatively easy compared to satisfying the medical card criteria. In the old days, a person got the rub of the green at oral hearings and so on. I raised a case here previously where a carer's mother had terminal cancer and was receiving hospice care, and the carer was refused for the third time three weeks before she died. That is becoming an intrusive and difficult area. These are the real cases. Someone spoke of having a State agency. There is already a great State agency, known as public representatives who are paid by the public purse. The great advantage of our doing much of this work is that it informs our policy development. When I was doing science we were taught about working things out in theory and then doing the practical to see whether it would work in practice. We are working all of this out in practice because we face all the people in difficulties and with literacy issues. I have some constituents who are not familiar with reading and writing, never mind State forms, and I try to explain it to them. We do much of the work for them. It seems we are always in the laboratory, even though we are not theoreticians in this. Those are some of the issues.

I will give the example of a farmer who looks after his mother. He got a form about a review. The reviews are constant. He was asked how many hours of work he did on the farm every week. It is a small farm in Connemara, which is around the house. He is in and out. Obviously, what he did was put down three hours a day, seven days a week. That totals 21 hours a week and exceeded the 18.5 hours allowed, which means, technically, "Out you go”. There are difficulties. I am not blind to them. I would be interested in the witnesses’ responses to those questions because these are where we all move forward together in a practical sense.

I ask Maynooth University to respond first.

Professor Mary Murphy

I welcome the questions. They clearly are grounded in reality and that is important. I would like to think that our capacity to do research is informed by our own life experience. I worked as the welfare officer with the Irish National Organisation of the Unemployed, INOU, in the early 1990s. I then worked as the policy officer for the Society of St. Vincent De Paul in the late 1990s so I come from a welfare practitioner background. I appreciate that what you can do in theory often cannot be done in practice.

Trying to bridge those two spaces is really difficult. I was also on the expert working group of the Commission on Taxation and Welfare from 2011 to 2014. It did copious amounts of spreadsheets about everything that could be done and made hardly any recommendations that were used.

In regard to the first of the five issues the Deputy raised, the incremental approach versus the big bang approach, how we are trying to frame this research is that if an implementation group, which may have been announced in the budget yesterday, were set up now, we do not anticipate that any payment could be introduced until 2027. We are not suggesting a big bang but a pathway approach. That would take a number of years to craft, step by step, until it reached a fully-fledged implementation timeframe, which would be around 2027. We are conscious that the income disregards increased yesterday, in part due to the work of Family Carers Ireland and the committee's recommendations. That is inching in that direction. The €1,000 per household is a really important way of inching up the income towards-----

No, the €1,000 is divided by two.

Professor Mary Murphy

Yes.

That is crucially important because if it goes up by €100, it means it is up by €200.

Professor Mary Murphy

Yes, the money is divided by two. That is what we believe the implementation group needs to do. It needs to sit down and ask how we get to a stage where the income disregards are increasing. At some stage the potential to do that is maximised. It is difficult to do it in the context of keeping pace with income disregards as designed into other welfare payments. At some stage we have to break from the working age welfare payment model, which is eventually going to restrict capacity, to increasing income disregards continually. We argue that at some stage we need to break from the means-tested idea of the working age payment system we have and introduce a new way of looking at carer's allowance. When and how that is done is an incremental choice of an implementation process that we estimate could take three, four or five years. We are not saying it can be done tomorrow or indeed in one bang in 2027. There would be a staged process to do that work. It would be somewhere in the middle of incremental versus big bang.

On widening eligibility versus increasing the rate, we are clearly coming down on the side of widening eligibility in how we have framed the proposal. We have said the proposal should be implemented at the current rate, anticipating that the extra cost of bringing in all those extras that Dr. Dunne just mentioned, will cost €397 million in the first instance. We are prioritising the use of resources by keeping it at the same rate but widening the eligibility in the first instance and then seeing what the rate should be in the context of the wider politics of income adequacy and the recommendations in the Commission on Taxation and Welfare for a mechanism to assess benchmarking and indexation. We are clear that the difficulty that so many people are frozen out of any support at all for their caring work requires that eligibility be widened in that way. That is the first point.

On the idea of the carer's benefit being increased to five years, I would not be averse to that. From a gender equity point of view, as a general yardstick, and this is where the Deputy will agree the theory and practice begin to get problematic, there is a sense that payments derived from a previous engagement with the labour market will generally tend to disadvantage people who have not had that engagement with the labour market because they will not have built up the entitlement in the insurance base. The Deputy talked about marginalised people and people with literacy issues, and we are talking about migrants, women, small farmers. They will tend not to have the entitlement to carer's benefit in the first instance. It will privilege a certain cohort of carer.

With respect, I work with marginalised Travellers and all sorts of groups for whom the means test is not a challenge.

Professor Mary Murphy

It is a challenge in other respects. They will generally pass the means test on a financial-----

If I could invite carers into the group, caring for the elderly, for example, tends to be time-limited. I am probably the oldest person in the room but when you reach a certain age you see your friends die.

Caring for a child born with a significant disability is a totally different situation. In my experience, in many of those cases, that is where we tend to come up against the issue of income. Many of these people have had good careers, in many cases. They are people getting on with their lives, paying a big mortgage. Suddenly they are confronted with this new challenge in their lives. Most of those people have a work record at this stage, but not all of them, of course. Therefore, qualifying on the benefit grounds rather than the means grounds is an easier way to go, certainly in the short term, if you extend it to five years.

As I said, that is only step one. We have been doing this incrementally. We have gone from €375 up to €450. That does not look so good but when it is doubled, it is a different story. In fairness to the Minister, she has given this priority over other things.

Professor Mary Murphy

The journey is an incremental one. We are trying to get a sense of what the end point of the journey will look like. Our suggestion is that it would be more framed as leaving behind the carer's payments as they are presently constructed and imagining a new type of welfare payment, which is the pension.

I accept that we are in two different places.

Professor Mary Murphy

We are trying to bridge the gap between those places.

I believe strongly in the universal payment. I find as a politician that the challenge is not where one would like to be, but how to get there.

Professor Mary Murphy

The language of the universal payment can raise a lot of alarm bells in people's heads because of the cost implication. However, we are very clearly saying that this is a non-means-tested payment but it is not universal because not everybody can qualify. It is strictly curtailed to a range of people who can pass quite strict medical and care criteria to show that they have an entitlement to the payment.

On the other question the Deputy asked, we are mindful of the medical assessment and the degree to which that is the more problematic thing for people than the means-tested assessment. By taking out the means-test assessment one problem is solved but one is left with the demeaning and navigational issues and information deficits for the medical and carer ends of the tests. Of necessity, they would have to remain. There is even a danger that they could become more stringent because they become the only tool by which one can manage the range of people who will be able to access the payment. That issue needs to be teased out. This is why we feel that the navigational working group is really important. It is not about having a free for all. It is about saying that these are really important and that this payment is not for everybody. It is for people who really need it but there must be a better process by which we make the adjudication of who needs it. It does not need to be so soul destroying and demeaning for people to be able to engage in trying to apply for it.

We are saying that the medical assessment would have to remain, while acknowledging the kinds of problems the Deputy has outlined. As for the example he gave, we came across lots of examples in the qualitative research we carried out. Many of them did not make any sense in terms of what people were required to go through in order to get the payment. There will always be a need for medical and care assessments, even in a totally reframed payment. I hope I did justice to the Deputy's questions.

Ms Catherine Cox

Family Carers Ireland has done exactly what Deputy Ó Cuív said. We knew this would not come overnight so this year we looked at a call to increase the income disregards over the next three years. This would bring us to the point, in three years' time, where the means test would be abolished. We certainly welcome the Minister's announcement yesterday bringing it to €450 and €900. We had looked for €500 and €1,000 but it is certainly a move in the right direction. We knew it would not happen overnight

Regarding the question of adequacy, in our prebudget submission we had asked for the income disregards to be raised and also the amount of the payment. The carers allowance is inadequate and does not support the actual costs of caring and particularly the hidden costs of caring. We know parents are paying privately for vital services such as speech and language therapy. Children are on waiting lists for two or three years because they cannot access the services they should be able to through our health services.

We want to see the amount of the carer's allowance raised. I do not believe it should be a one or the other choice. We have to call for both of those, which we did in our prebudget submission. Going back to Covid, the pandemic unemployment payment, PUP, was set at €350 per week because the Government recognised that people could not live on much less. However, family carers are now expected to live on €248 per week on foot of the €12 increase. We welcome the changes and commend the Minister, Deputy Humphreys, but there is still a huge amount to do. Part of the issue is that in the health service, the systems and supports are not there for carers, which puts even more financial pressure on family carers like Ms Thyne and others. She made a really important point on the carer's benefit. The issue of the five years is something that could be looked at and discussed. Half of the 500,000 carers in this country are juggling paid work with care. Where we can, we want to keep carers in work and support them through initiatives like Caring Employers. We want to support carers to stay in work but we also want to support those who have to leave work for a time. The period of five years might be something the navigational group could look at.

It would also allow people to do up to 18.5 hours work and get the benefit.

Ms Catherine Cox

Yes, it is something worth considering.

My point is that in my experience, what I would call big-bang change is hard to achieve. We then have to decide where we would like to be. One can say that fairly quickly but much more complex are the priorities in trying to get there.

Professor Mary Murphy

Perhaps big-bang change is not entirely accurate. However, in this discussion it is important not to lose sight of the fact that if the payments stay in context of the Department of Social Protection and income support payments, they are seen as anti poverty measures and income supports. They are required to be designed that way, with a host of other criteria that are about targeting money, maintaining work incentives and other objectives of the Department of Social Protection.

The idea of refocusing a payment to socially valued care is that it would be taken away from being an income support, so the payment becomes one of right for people, once they are doing care work. It is a totally different ballgame, so to speak, by taking it from one system where is understood as an income support and moving the payment to a different Department where the value is placed on the caring activity. I would not like this point to get lost in the more minute detail of how the present system could be amended to make it better. Clearly, that can always be done, but the shift would allow us to appraise how we approach the concept of care from a different perspective

Ms Emily Thyne

It did not feel like a choice for me to quit work. I would have preferred to keep working with support but that was not possible, so I had to stop working. I looked for carer's benefit but because I was self-employed, I was not eligible. The idea of allowing carer's benefit to go on for five years instead of two is only still helping a certain cohort of people. Self-employed people are not eligible for carer's benefit.

That is easy to rectify. In the past eight years there has been a huge increase in the ability of self-employed people to access benefits such as unemployment benefit and invalidity benefit. It could be argued that the self-employed contribution is disproportionately actuarially good compared to the normal PRSI. One is 14% and the other is 4%. However, that is an argument for another day. Extending this to carers is the kind of thing that can be easily achieved. We have already been incrementally extending the benefits to self-employed people. It used to just be the State pension.

That is still in the reform package, rather than being predicated somewhere. The advantage here is that the more you widen the eligibility, the more you will find out, through real laboratory situations, the actual demand for this if you did take away the means test completely. In other words, you would get out of this argument about the figures of €1.2 billion versus €397 million. Let us remember that this is an argument over which we do not have a huge amount of control because at the end of the day, despite that, the people will be unilaterally on their own or-----

I am going to move along. The next member indicating is Senator Wall.

I welcome all our guests and thank them very much for their time, as well as for the report, which I read last night. There are a couple of issues. I think it was Dr. Cullen who spoke about worth and value. I deal with carer's allowance on a daily basis and I think in the last statistics I saw that 77% of those who are on carer's allowance are actually women. Many of those women tell me they feel degraded and that they are not worth anything in this system. I have spoken previously to Ms Cox about the means testing, and recently there was a Commencement matter in the Seanad on the whole area of the carer's experience. Did the effects of the fact there are so many women - 77% - come through in the study? That is affecting women more than any other gender.

Dr. Cullen mentioned the form. I did not pick up on the name of the country she mentioned that had a four-page form. As I said, I deal with carer's allowance regularly, on an almost daily basis. We had a 34-page form, which is now 28 pages. To me, it is way too prescriptive, it is way too much and it is off-putting. That is the big question and I know many of the representatives said that. It is off-putting to people to have to fill out 28 pages. Have the representatives looked at that as part of the report, and specifically the issue of the four-page form versus the 28-page form? What is the difference between the four-page form and the 28-page form? It is something I deal with daily.

The big issue is regarding those who are refused carer's allowance and who do not appeal. Unfortunately, I also come across this too regularly. First, they do not have the time because they are caring 24-7 and they just do not feel it is worthwhile to actually appeal it. However, it is worthwhile because it includes, as I have said many times at this committee, the whole idea of oral hearings. It involves actually getting in front of an inspector and telling them exactly what you are doing 24-7 and putting that human story across. This is rather than submitting a 28-page form. It must be done and it must continue to be done. In the witnesses' findings, have they seen why more people do not appeal when their carer's allowance is refused?

A big issue we touched on this morning regarding the carer's allowance relates to those who are over the age of 65. I deal with a lot of people on this. In the last set of statistics we had, I think it was one in five who are actually over 65. The big worry they have is regarding who will look after their loved one when they are no longer here. It is a huge worry. I will go back to what Family Carers Ireland continues to say every time I meet it, which is regarding the €20 billion that is being saved by the State. For me, the State needs to recognise that. It needs to recognise the fact that that €20 billion is there. When we talk about the €397 million that it would cost to abolish the means test, it is something that we obviously support.

As well as that, Deputy Ó Cuív was right regarding the big bang theory versus the instalment. I know Family Carers Ireland have the instalments over a period of time. Thankfully, the €900 income disregard that was announced yesterday is a step in that direction. There is no doubt about that. One case I am dealing with at the moment involves a lady whose husband is a garda. She is down the country and is not in my area. She is distraught because she cannot qualify for carer's allowance. She does not understand. She is caring for her child 24-7, as Ms Thyne is doing, and she has been refused carer's allowance within the last two months because she is over the limit. I could not get back to her until yesterday because I did not know where the new boundary was going to be. I am sure it will help her a little, but not to the extent that it should. We welcome the difference in the means test. We are trying to abolish it, and yesterday was a step in that direction.

Ms Thyne is right that the carer's benefit is only for a certain cohort of people. I welcome it going to five years as well, but it will only affect a certain cohort of people. At the end of the day, I always refer to the fact that this figure of €20 billion must be reflected by us looking after people.

To finish for the moment, I will go back to the issue of worth and value. Every time I meet somebody who has been turned down for carer's allowance, of whom there are too many, they ask me if the State does not value what they are doing for it. Obviously, if they do not look after that loved one, they will end up in State care. That is something we do not want, and no State wants it. I do not want to go into housing adaptation grants, which is crazy at the moment. In my area of Kildare, there are issues being brought up about families who are trying to apply for those. I continue to ask for the housing adaptation grant to be changed. However, the issue here is that we have to recognise those who are going above and beyond to look after their loved ones. This is something they want to do, which must always be said, but they feel that their worth and value are not being recognised by the State at the moment. It is something we need to do more of. I welcome the report from Maynooth University. I would welcome some replies to those few queries.

Dr. Pauline Cullen

Absolutely. The participants, and particularly the women participants, were very sensitive to the issue. The household means test was deeply gendered in its logic. The notion is, of course, is that the policy in itself, as well as the way in which it is administered, reinforces deep gendered assumptions about who should care. The gender pay gap is, obviously, an external structural issue that means that it will be women who will be the ones to care. There is a great sensitivity to that. This was considered to be the normal natural function of women. This is not to say that there are no male carers, but this is a predominately female phenomenon. That definitely came across in the research as a very clear outcome in that sense. The value of that feminist ethics of care approach, which we took, was to bring that to the surface in real ways. Also, it was not to make the analysis into a sentimentalised vocational notion of care, but to raise the issue of its social value. As it is deeply feminised, its value is very low. We know that from looking at the formal workforces where if an occupation becomes feminised, its value is lowered. Certainly, that is something we were keenly aware of. It connects to broader intent to make sure that any changes that happen, such as bringing equality-proofing to the surface. It is very sensitive to the issue of how this can also improve gender equality and justice outcomes as well. I will hand over to Professor Murphy to deal with that.

Professor Mary Murphy

The Senator welcomed the report, as well as its focus on abolishing the means test. I will emphasise that you will not just bring in a wider group of people who will become eligible when you abolish the means test; you will also abolish the demeaning process and the administration costs. That cost of €397 million is therefore actually good value. I wanted to firmly put this on the record. It has been mooted in terms of other costs, such as the figure of €1.2 million, which a couple of people mentioned. That figure of €1.2 million came from an assessment which was based on the notion that everybody who was said to be a carer would automatically get carer's allowance. That is not what we are proposing. Let us be really clear about that. We are proposing that there is to be no means test, but that there should be quite stringent medical and carer processes-----

Can I come back to that point?

Professor Mary Murphy

-----and it is important to do that.

I take what the professor said. Where are the witnesses in relation to the medical assessment? Are they proposing changes or are they looking at changes? Do they think it is fit for purpose at the moment? I wanted to follow up on that comment, and Professor Murphy has just mentioned it again. I know she is not saying that we should carte blanche give carer's allowance to everybody, but where are the witnesses in their research with regard to the area of medical assessments?

Professor Mary Murphy

It falls into the recommendation we have for the navigational group. The research threw up quite a bit about the medical assessment and the process. We mentioned "do not review" earlier as an example of how it could be improved. There are issues from the point of view of the medical profession in relation to its engagement and its capacity to engage with it. There are repeated forms that need to be filled in when they have already been filled in. There is already a Government policy on reusing existing administrative data that goes from one Department to another. Therefore, we can see a number of ways in which the medical review process could be made more streamlined, efficient and effective. That is the focus of the navigational group, but we still insist that it is necessary to have a medical assessment of eligibility. That is how one can put the boundaries around the number of people who would be eligible for a payment. The costing, therefore, is €397 million, and not the exaggerated cost that may have been put out as a political distraction, at some level.

It is really important to see that the costing is grounded in the Parliamentary Budget Office assessment of what the cost would be.

Ms Catherine Cox

The Senator asked why people do not appeal. I would say it is because it is soul destroying and they are exhausted. Carers have to fight for everything, including assessment, interventions, education and transition to adult services, and, on top of that, they are asked to go through this process and appeal. Quite often they are just exhausted and they give up the fight.

We absolutely believe a review of the medical report is required. Parents tell us about how they feel guilty. They almost have to say what their child's worst days are to get recognised and paid, which should not be the case. Sometimes they want to talk about the good things that happen but they cannot because if they do, they will be turned down. We certainly need to look at the medical form. If other countries can do it with four pages, why can we not do that here? That should form part of what this committee examines.

Mr. Shane Gough

Finland has a four-page form. The difference between the Irish and Finnish forms is that in Finland, officials just ask for basic information such as the name, address and name of child or person being cared for. All the medical stuff is done by a medical professional or a social care professional and, therefore, the parents or the person providing the care does not have to deal with it.

On the adequacy versus eligibility question, it came across in all the interviews that when carers are refused the carer's allowance due to the means test, it is incredibly degrading for them. All the carers emphasised in the interviews that abolishing the means test provides recognition for the vital care work they are doing.

I thank all the witnesses for attending. I apologise for being late. I was on local media speaking about yesterday's budget. I have met a number of the witnesses previously to discuss this comprehensive proposal. As Deputy Ó Cuív outlined, we are all aware that it is significant and has challenges. While I am critical of elements of the budget, I welcome that the thresholds were increased in the yesterday's budget, which is something we have looked for.

As a general observation, it is a somewhat challenging proposal to communicate politically in that there are two balancing factors. One is the principle of recognition; this work is going unrewarded and unrecognised. The second is the strategic issue of whether the current care system and the reliance on families is sustainable. Ireland probably has a higher proportion of family carers than other societies do. Will that continue into the future if they are not properly supported? We need to be aware of both and need to communicate both, but we do not want to lose the emphasis on the principle of recognition, nor do we want to lose sight of the strategic consideration. I offer that as an observation.

I probably should know the answer to this and I was rooting around to try to find it but I was not able to. I think the Parliamentary Budget Office costings that Deputy Tully requested on the witnesses' behalf indicated that there are 90,000 people on carer's-----

Ms Catherine Cox

Yes, the carer's support grant.

The carer's support grant. Ms Cox anticipated where the question was going. How many people does she anticipate would avail of this if the means test was removed? That is where she is going. It is approximately 125,000.

Ms Catherine Cox

There are 125,000 carers in receipt of carer's support grants and that is not means-tested. However, some people might be getting two grants if they are caring for two people.

Therefore, it is not a perfect proxy, but it is an approximation.

Ms Catherine Cox

Dr. Dunne might come in on that as she has the figures.

Dr. Nikki Dunne

I believe there are 5,675 care recipients-----

Ms Catherine Cox

That is where somebody might be claiming for two people.

Dr. Nikki Dunne

Sorry, yes. Some 5,500 people received the non-means tested carer's support grant as a stand-alone payment in 2022, so that is the additional-----

While this is not a reason to fail to proceed with it, it could be an issue if it was introduced further down the road. While I suppose it is their job, there is always pressure from the bean counters in the Department of Public Expenditure, National Development Plan Delivery and Reform. If the means test was abolished, there could be demands for tighter tests on medical requirements and so on. It could be claimed that it is too open-ended and that we need to be more exacting. Has that issue come up in discussions with officials from the Department of Social Protection? Do they have a view on whether the current medical tests are adequate, reasonable and robust?

Professor Mary Murphy

It was discussed at the steering group that did the research. It came up in the process of the merging of knowledge, particularly where departmental officials were mindful and one might say anxious that this could happen. As a cost-saving measure, there could be pressure to make it meaner as to who would be eligible on medical grounds, were it to become easier to pass the eligibility requirements on income grounds, and there might be trade-offs there. That would need to be carefully configured in an implementation stage as to what the balance between the two would be. We are certainly not recommending that. We are recommending that it would be as is, subject to improving the "as is" from an obligational point of view and, as Ms Cox said, from the review of the medical criteria.

However, that is not to move people in or out. It is to solve anomalies and make the process as respectful and non-demeaning as we can; it is not to rule people out. The Deputy is correct that there is always a risk that when something that increases eligibility is introduced on one side, people find other mechanisms or reuse existing mechanisms to close down the eligibility on another side. That would need to be very carefully balanced and monitored.

However, the present system is not perfect either. One could argue that already for a growing number of people who are entitled on medical and care grounds, the means test is being used to screen people out. Getting the balance right is difficult and requires really careful design. That is why we are not talking about tomorrow; we are talking about 2027. We need a good really hard review with the right people. That co-production is important and we need to have the people who will ask the right questions in the room. That includes the staff who will implement it and also the people who will use it, both from an NGO and a family perspective. Their knowledge can help to perfect the system.

Nobody is trying to design something that everybody will get. Everybody is respectful of the fact that there are constraints on public resources and it is about trying to get the balance right. We did research where people told us that getting rid of the means test it would make a big difference to how they feel about being carers. They know they still need to prove that they are carers. They know they still need to prove medical care, but getting rid of the means test would make a big difference to their lives. When we looked at the costings, it surprised us that retaining some element of means testing at a very high level was still quite costly and there was only a €10 million saving from the abolition. That gave us the answer. There is not really any point in spending €10 billion to administer a system when we would only save €10 million in the cost. There was no real question there.

Those concerns later down the road are not a reason not to do it.

Professor Mary Murphy

No, but they are very real and we are cognisant of them.

I have asked this question previously but it might be no harm to have it on the record. In the models being piloted in Finland and Austria, it is more of a salary-based or payment-based approach. While this may be particular to the context in Ireland, why is it better to do it through the social protection system?

Professor Mary Murphy

We argue that the social protection system would administer it, probably on behalf of another agency, so it is not an income support. That takes one a little bit of the way around social valuing. So it is somewhere in between an income support and a wage in terms of how people would feel about their right to it.

The Deputy mentioned the 20% of people who are not of working age because they are beyond the working age. Again, when one asks people, a certain majority say that they want the provision not as a wage but we would be open to the idea that a certain number of people might like to see it as a transitional period in their lives where they could have it as a labour market structured activity, and they may be able to get some education and training that could enhance the skills that they might be developing, and move on from that and progress from it, if and when the caring activity ceases to be a feature of their lives. There are advantages to seeing it for some people as a labour market support and that can be designed into the system that we are proposing. However, we are saying in the first instance that we should get the overall model right and then we can build in these variations on a theme.

My final question is slightly off topic but I am sure that our guests will want to comment. In September 2022, the Minister, Deputy Humphreys, announced the move towards a carer's pension and I think at that stage the Department was looking at this coming January. I did not see a lot about this matter in yesterday's budget but perhaps things are happening in the background. Can our guests give an insight into where things are at and whether this committee can give assistance?

Ms Catherine Cox

I can and it is good news. There will be a pension. Long-term carers, who have done caring work for 20 years or more, will now have their contribution recognised for a pension. It is not a new pension for carers, rather their caring years will be recognised.

We have worked with the Department of Social Protection on a pilot register and carers have registered over the last number of weeks. Anybody who is providing care, even if they are not of pension age or close to it, should register today and over the next few weeks because when they come to pension age, they will have their contributions recognised. The register is on the Department's website and it goes live from January 2024. That is an extremely positive move. We have fought long and hard for such recognition for many years, my colleague, Clare Duffy, in particular. The provision means that carers who have been caring for 20 years or more will have their contribution recognised and valued. I urge carers to register on the website as soon as possible.

That is good news. I congratulate our delegations on their success in the budget yesterday and that caring years will now be recognised.

I second that. It is a positive move. It is great to see forward progress because Family Carers Ireland have had to fight a long time for what seems to everybody at this committee to be the right thing.

I found the presentations really interesting and I apologise that I am going to be a little bit all over the map, because I have noted points along the way. I found a lot of the presentations very thought provoking, in particular the idea of the big bang versus incrementalism. It is important as well to see any provision in terms of whether people are tweaking around the edges of something or do they have a vision that they are trying to get through. Looking at the pell-mell of government, a lot of it tends to be fudging, tweaking and slight improvements as one goes along and it is difficult to find space for that vision piece, which I think is needed more.

I was very struck by the fact that it is 33 years since the carer's allowance scheme was designed and I thought about how different society was back to 1990. My family was a single-income household in 1990. My dad had a job and my mum was at home but in the economic reality of 1990 that was not unusual. For a lot of families, a one-income household was enough to make things stack up.

One could take this kind of means-tested view and say, "if they have enough under one income, they will be grand and mum was probably at home anyway." That situation is very different from the context in which we find ourselves now where if one partner has to step out of the workforce for whatever reason, that very often puts the household into financial difficulties.

I was struck by Ms Thyne's contribution. I live with a full-time musician and it is difficult because of the self-employment piece. As Ms Thyne has said, one does not generate one's own work and must go places for the work. Even that self-definition piece is important for somebody like Ms Thyne, who is a musician because that is how she defines herself, and you want to be able to define yourself as a musician and stack that sefl-definition on top of being a parent, a carer and not have those roles being mutually exclusive and not for one of those things to push out or preclude the other.

I was struck by the idea that what we are talking about is not really a social protection support. It is not a safety net and, as Professor Murphy said, it is not an income support. We are talking about an employment where somebody is working and providing a public good. We are valuing a public good at a scale of €20 billion across our society. I was struck by the thought that if someone sought to have a second employment and to be the second income in a household, we would never ask that person whether, as he or she was thinking of working in a bank, we could do a means-test first before he or she sought that employment. Consequently, it strikes me as strange to apply a means test where somebody is actually working and providing a valuable service to society. It seems strange to say we are going to means-test the person before we decide that is something we are going to allow him or her to do or allow him or her to benefit from.

There are many reasons to consider care as work at present, with demographics being the obvious reason. There are also wider conversations like digital disruption and what are the sectors of the economy where we cannot expect artificial intelligence to take over. I do not think digitisation is going to provide for Ms Thyne's son in the way that she can provide for her son. Unless we think about how we value care work within our society then we will to struggle to remake an economy that adequately provides for those caring needs into the future. That comes back to the vision versus incrementalism piece and whether we are really looking to the future.

Referendum debates always take on a life of their own. Very often they turn into debates about anything other than the actual wording of the amendment being put to the people. The forthcoming referendum offers us the opportunity to seriously talk about how we value the role of caring in society. What would our guests like to see in that debate? If it is an opportunity then how should we do as the people who hopefully will play a role in framing and leading the debate? What would our guests like to see us push for in terms of the discussion on the referendum?

Ms Catherine Cox

Family Carers Ireland is part of a coalition with a number of groups, including the National Women's Council of Ireland and One Family. First, we welcome the referendum. We absolutely welcome the removal of the outdated reference to a women's place being in the home and, hopefully, replacing that with wording that recognises, and values, care in the home and in the community. We would also like to see an obligation on the State to adequately resource that care in the community and home. For now we would like the committee's support on actually seeing the wording. We have called for the wording. There is meant to be a 16-week period between when the wording comes out and when the referendum happens for civil society to have an open discussion and debate.

For us, putting reference to care in the home in our Constitution is in itself recognising and putting a value on that care, so it is hugely positive. However, we need to see the wording as soon as possible. We hope that wording will be as close to the wording that came out of the Oireachtas joint committee where, again, there was recognition of care in the home and the community. We hope we will see that as soon as possible, so this committee's support on the issue would be very useful.

Does anybody from Maynooth University want to contribute?

Professor Mary Murphy

On what the Leas-Chathaoirleach was saying about tweaking versus the vision, having been involved in the welfare system for the past 40 years, I believe we can only tweak things for so long before we make the system so complicated that nobody can work it. That is what often happens with payments. We fall over ourselves making tweaks and it becomes very difficult for citizens to work their way through to the entitlement. Participation income came into vogue as an academic concept to try to move away from means testing as a general approach to how welfare could be administered. The National Economic and Social Council published a report last week entitled Is Ireland Thriving? It was very interesting and looked at a wide range of social indicator data. There is the idea of the vision we are trying to get to, what kind of society we are trying to create and how something like a participation income for family care could help us achieve that. Whether people are caring or receiving support and assistance to help them live lives they value and want to thrive in, we must ask what are the supports and income they need for us to make that happen. It is about that package and services and supports, as well as income, and we should not forget that.

Care, whether it is caring for, caring about or caring with, is part of our lives. This is about trying to take it out of a narrow view that it is about income support and finding a way of bringing care much more into the open and rewarding and making visible that care work which, as the Leas-Chathaoirleach said, is worth €20 billion overall. I see the referendum as an opportunity to have a debate about what kind of society we want, bring care, gender equality and the diversity and role of different types of families much more into the public view and get a much better understanding of how we see this developing and what kinds of services and supports carers need in order to be enabled in lots of different ways. The definition of care has to be expansive to take into account the variety of ways people engage with care and live their lives. Some people are adamant they do not want to be seen as recipients of care, but as people who need certain supports and assistance to live very valued lives. As such, we need to be careful how we talk about care, even in the context of the referendum, so it is understood to be as wide and enabling as possible for everybody to live an independent, thriving life. Participation has a part to play in the story of the vision we want for society.

I thank Professor Murphy. Do any members wish to put further questions?

Professor Murphy is talking about a participation income. Wikipedia describes it as "similar to Universal Basic Income in that everyone enjoys a measure of financial security, but [it] obliges claimants to actively engage in socially desirable projects as temporary or-----

Professor Mary Murphy

It is not a universal basic income, to be clear, because it is conditional. It requires people to do something.

Yes. That conditionality could cause problems. Again, when we get to the real coalface of the real people we are dealing with there is what I call a Victorian attitude that if a person gets the dole, he or she must be available for work and actively seeking work. There are some people I know who are not disabled, or certainly would not qualify for disability allowance, but who are highly unlikely to even get employment on a community employment scheme. We are not going to deprive them of income. I have a much more liberal view than Professor Murphy; I say we should just give the income. I do not believe there are too many people who are capable of work who do not want to work. I have never found them. I have worked at the coalface of creating employment as a manager of a co-operative society. I have been involved in employment schemes and set them up on behalf of the State. The rural social scheme was set up during my time. I wrote the specification for that, not the Department.

It was messed up subsequent to 2011 and totally destroyed, but that is another day's work. That is particularly the case with couples. We are then back to means testing. Believe it or not, the way I had done the means testing was much more liberal. When Professor Murphy talks about a participation income, is she talking about recipients having to try to engage?

Professor Mary Murphy

I totally agree with the Deputy that the conditions associated with actively and genuinely seeking work are very negative with respect to how they are experienced by people. It is not about that. It is about trying to encourage types of participation that are socially valuable and rewarding, and about valuing that type of participation. In this context, we are talking about family care being the type of participation we want to reward and value. In another context we could talk about the person the Deputy discussed, maybe a small farmer, who could otherwise get caught with dole conditions and actively seeking work. That person might be doing some environmentally valuable work.

Farmers are exempt.

Professor Mary Murphy

I was just giving an example. Maybe the person is very active in his or her local community and we want to reward that type of participation.

Professor Murphy is dead right. People who are self-employed lose 100% of their income if they do any work. It is 100%.

Professor Mary Murphy

Yes, many of the conditions are really not enabling people to live thriving lives. What we are trying to get at here is the design of a payment that is rewarding people who are trying to contribute to society and live a thriving life. We are trying to encourage people to be reciprocal actors in life and be part of society. We are not trying to give money for nothing or to everybody, but trying to put in place some narrowing of the criteria so it is not a universal basic income and it is not for everybody. In this example we are giving, it is very clear the payment is only for those who are living with family members or people who are entitled on the grounds of medical eligibility and that the person can prove he or she is in a caring position for them.

We are back to all this checking and proving and proving and checking.

Professor Mary Murphy

We discussed that while the Deputy was out and we think there are ways to improve that checking. It is, however, inevitable that we will have some degree of checking on medical and care grounds.

Proving and checking. As I said, we are at the coalface of how this plays out.

Professor Mary Murphy

We had a good discussion on that. The trade-off is checking through means testing or other types of eligibility. There are tensions in designing it to get the balance right between the two. There are very real tensions there.

As I said, for many of the people I am dealing with, it is about the means test. Everybody who comes in is unique. There are people in Ms Thyne's situation and younger people caring who have had employment and so on. Means testing is a challenge in such cases. For a lot of people who are in receipt of unemployment payments or whatever and come to me, and there is a fair cohort of them, it is not the means test but other things that are the challenge. We just need to be careful that in solving one problem we do not create another.

Professor Mary Murphy

I agree.

I am always wary of the old Victorian attitude of the deserving and undeserving poor and people saying they made their contribution to society and others did not, and that determines who deserves a payment. I do not buy into that; I am totally anti-Victorian.

Professor Mary Murphy

Is the Deputy suggesting I am Victorian?

I am just telling Professor Murphy where I stand.

Professor Mary Murphy

I am joking. I appreciate that and I agree. The rules the Deputy was talking about as regards being available for and genuinely seeking work have been very negative in people's lives. They are not necessary. Most people, as the Deputy said, are looking to get work and we do not need to police that activity to the degree we are doing so at the moment. I agree with him.

I thank the witnesses for what has been a wide-ranging and thought-provoking discussion. I certainly learned a lot and it has made a significant contribution to the wider debate about where we go, especially in the run-up to a referendum we hope will help air these issues in a more public format. I thank Professor Murphy, Dr. Cullen and Mr. Gough of Maynooth University and Dr. Dunne, Ms Thyne and Ms Cox from Family Carers Ireland for their contributions. That concludes our public business.

The joint committee went into private session at 11.25 a.m. and adjourned at 11.45 a.m. until 9.30 a.m. on Wednesday, 18 October 2023.
Top
Share