Ms Zoe Hughes:

I am pleased to be here today to represent Care Alliance Ireland and make this statement to the joint committee on the impact of means testing on carer’s allowance and other social welfare schemes. I thank the committee for the invitation to be here today.

For those who may be unaware of the work of Care Alliance Ireland, we are an umbrella organisation, with our 90-strong member groups drawn from across the caring, disability, addiction, mental health, chronic illness and broad community sectors. We provide research, policy and governance supports to our membership, as well as providing online supports to a growing number of family carers across the country. As an organisation, our vision is that the role of family carers is fully recognised and valued by society in Ireland.

That recognition of family carers that we highlight in our vision and mission as an organisation is a key concept in our core message to the committee today. Recognition of family care may come in many forms: recognition at national policy level, such as in the national carers strategy, which has not been updated in 12 years despite a commitment in the current programme for Government to do so; recognition through spoken and written rhetoric, including phrases such as carers being the backbone of Irish society or lauding the selflessness of family carers; and recognition of the practical challenges facing those providing care, including the significant financial difficulties many families experience when a member requires care and support above the level expected. It is this final aspect of the recognition of care that I would like the members of the committee to be most aware of, as it is the type of recognition that this particular committee can address in a meaningful way through changes in how the means test and applications for carer's allowance can be administered.

Significant research points to the financial difficulties which many family carers find themselves experiencing, which can include higher heating costs, higher food bills, and increased and inescapable travel costs, including adapted vehicles and hospital parking. This is exacerbated by the decreased earning potential for many family carers, in particular for those with the highest levels of caring responsibilities. Living on a fixed income as a single person is not the same as living on a fixed income as a family with these additional costs. Most significantly, our colleagues in Family Carers Ireland have recently undertaken a number of research studies specifically investigating the financial impacts of family care, along with the impacts of means testing of carer's allowance, which no doubt the committee will hear about in much more detail this morning.

As Care Alliance Ireland is an umbrella organisation, we do our best to represent the views of our members in discussions like this. Most recently, in our preparations for budget 2025, we asked our membership what some of the core issues facing the carers they support are. The abolition of the means test for carer's allowance was highlighted by over half those organisations who responded as a key issue.

In addition to the work we do with our member organisations, in March 2020, in response to Covid-19 we established our online family carer support group, which has since grown to a membership of over 8,100 family carers who get support, advice and access to social activities on a 24-7 basis. In recent years one of the key aspects of care which unites the membership, and causes by far the most anxiety, stress and confusion, is the means test and related reviews for carer's allowance.

My colleague, Ms Tara O'Connor, project co-ordinator for the group, can discuss the issues that come up in more detail during our discussions this morning, but the key messages we hear from our family carer members are the following. First, the means test is viewed by most family carers as an invasion of privacy. In the very helpful discussions we have had with Department officials who oversee the team managing the means tests and reviews, we know that the details of everyday spending are not of interest to the assessors. However, this is not always communicated to those undergoing the assessment at what is very likely one of the most stressful times of their lives. Many carers are angry at being asked to prove how they spend their money, even if the purpose is to show they are not above the means in savings or not earning additional salary when in receipt of carer's allowance.

Second, we know that carer's allowance is positioned in Irish policy as an antipoverty measure rather than as payment for work undertaken. However, currently family carers are the only social protection customer group required to not only be close to poverty to receive it but also to work full time and still be at that line of economic struggle. This is seen as insulting to many family carers, as grateful as they are to have this protection measure in place. In addition, those just on the higher side of the means cut-offs describe feeling like they get no recognition at all for what they do simply because they have a partner who earns enough or who was perhaps lucky enough to have savings before they became a carer.

Third, the process of the means test is experienced by many applicants as overly burdensome and difficult to navigate. Carers already spend large chunks of their day providing significant physical, medical and emotional support, and the additional administrative burden of ordering and paying for bank statements, filling in forms and paying for postage is significant for many.

The final point I wish to raise before I finish this statement is that we in Care Alliance Ireland understand that there is no pool of infinite money to be spent by the Department of Social Protection. We know that as the system is currently configured, some type of triaging system needs to be in place, which is how the means test currently functions. It is a blunt tool, but one we no longer believe is fit for purpose in the 21st century.

If the Government is to truly live up to the statements made across the political spectrum that family carers are the backbone of care in this country, that they are some of the hardest working and most dedicated citizens, and that they should be respected as key partners in care per the national carers strategy, a radical rethink of how carers are supported financially must take place.

I thank committee members for their time and I am happy to answer questions and discuss such a rethink in the time to come.

Ms Catherine Cox:

I thank the committee for the opportunity to speak today regarding the impact of means testing on carer's allowance. I am head of communications with Family Carers Ireland. I am joined by a family carer, Ms Moira Skelly, who will speak from her personal experience on this topic.

The State has reached a critical juncture in its treatment of family carers. While heavily defeated, the referendum on care earlier this year ignited a national conversation about crucial issues surrounding care and disability. It brought to light the many challenges faced by family carers and those receiving care and highlighted the need for a more ambitious, progressive and rights-based care system, which has resulted in an unequivocal wake-up call that the State can no longer be complacent in its obligation to support the hundreds of thousands of family carers to whom it is indebted due to the unpaid care they provide.

Why is reform of carer’s allowance needed? Despite improvements in recent years, the carer’s allowance means test remains one of the most contentious issues among family carers. Thousands of full-time family carers caring for people medically in need of full-time care do not qualify for carer’s allowance or receive a reduced amount of carer's allowance due to their modest household income. While carer’s allowance has served the needs of many carers for over three decades, we believe the scheme is now overly restrictive, gender-biased and no longer fit for purpose.

Why is that? First, it is outdated. It was introduced in the 1990s for people living with and caring for a relevant pensioner. It was never designed to meet the very different circumstances of carers who care for prolonged periods and need an income support that encourages, rather than restricts, their participation in work and education. Second, it undervalues care work. Carer’s allowance is the only social welfare payment where recipients are expected to work full time - more than 35 hours, many doing 24-7 - and, in return, they receive €16 more than the basic social welfare rate. Third, the payment itself is inadequate. Even before the cost-of-living crisis, households caring for a child with a profound disability faced additional weekly costs of up to €244, which is more than the maximum level of carer’s allowance. It is essential that a progressive welfare system keeps pace with inflation and ensures welfare rates are appropriately benchmarked to safeguard income adequacy, and that is not being done in this case. Fourth, the means test also forces carers to be financially dependent on their partner. Means testing based on household income leaves family carers - the majority of whom are women - who do not receive carer’s allowance financially reliant on their partner. Fifth, it also discourages employment. By imposing an 18.5-hour ceiling on work or study, this traps many family carers, forcing them to remain welfare-dependent and unable to prepare for life after care. Last, the taxation of carer’s allowance is unfair. Making carer’s allowance a taxable source of income when other comparable social welfare schemes are not taxed - like, for example, the jobseeker's allowance, disability allowance and the part-time jobs incentive scheme - is simply unfair. It imposes an undue penalty on family carers and reduces the monetary value of carer’s allowance.

Family Carers Ireland acknowledges the efforts made by the Minister, Deputy Humphreys, and her Department to increase the income and capital disregards for carer’s allowance in both budget 2022 and budget 2024, and the Minister's commitment to review the entire system of means testing for family carers. We believe fundamental change is urgently required and are calling for a transition from the outdated means tested carer’s allowance scheme towards a more equitable and gender-balanced family carer payment - what we would call a participation income - for full-time family carers 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 our State’s reliance on them.

A participation income is a form of State income support that enables and values certain forms of unpaid work. It is similar to a universal basic income; however, the main difference is that individuals have to do something socially valuable in exchange for the money they receive. Care work is often referenced as one of the most deserving forms of unpaid work that would be well suited to a participation income. Both the National Economic and Social Council, NESC, and the Oireachtas Committee on Gender Equality recommend that consideration be given to a participation income for carers, and research undertaken with Maynooth University also supports this recommendation. Under this new scheme, other existing eligibility criteria attached to the carer’s allowance scheme could remain in force, which would mean that the scheme would not be open to potential abuse.

How much would it cost to abolish the means test for carer's allowance in the morning? In 2024, a Parliamentary Budget Office estimate ascribed a full-year 2024 cost of €375.3 million to abolish the carer’s allowance means test. Given that our family carers save our State €20 billion each year, we believe that is more than worth it. These estimates are considerably less than €1.2 billion that was suggested by the Department in 2022.

We believe now is the time to reassess the value we place on unpaid care and review how family carers are recognised and supported financially by the State. We believe this review must lead to fundamental changes in carer’s allowance, including the reclassification of the scheme, the abolition of the means test and the establishment of a participation income for family carers.

I will now hand over to Ms Moira Skelly, who will share her experience of the impact of means testing.

Ms Moira Skelly:

I thank the committee for the opportunity to speak before it. I am a full-time family carer for my daughter Ciara. My husband Paul had to take early retirement in order to help me care for Ciara as her needs are so high and she requires 2:1 support.

Caring is not something I chose. I did not wake up one morning and decide that I wanted to be a carer. Life happened. Our beautiful daughter Ciara was born profoundly physically and mentally disabled. Ciara has very complex medical needs. She has cerebral palsy, epilepsy, autism and global developmental delay. She is PEG-fed, non-verbal, a wheelchair user and incontinent. She requires 24-7 care.

Life as a family carer can be rewarding and joyful but it has also been very difficult. We have to fight and wait for everything - for a diagnosis, therapies, assessments, appointments and appropriate school and adult day services. Everything we have had to do has been a battle, and it should not have to be.

On top of these daily battles, we are forced to undergo degrading financial scrutiny in order to justify our right to receive carer's allowance.

Filling out that form was soul destroying, humiliating and felt so invasive. I felt like I was begging for something that I should be entitled to. I had to give up work full-time to care for my daughter. My career had to be abandoned. A system like this forces many family carers into poverty. It does not recognise or value the work we do. Means testing caused so much stress and stigma for family carers like myself, compounding the exhaustion and pain we already feel.

To add insult to injury, the means test does not take into account the cost of caring in a household like ours. It does not allow for the cost of buying an adapted car, transport, medical expenses, special food supplements, additional heating and electricity required to heat our home, run Ciara’s hoist and charge her electric chair. It is also very difficult to keep her room warm all of the time because she does not move and she feels cold, even when the rest of us are feeling warm. It does not recognise the hidden costs of caring and the impact it has on our mental and physical health and well-being. We are exhausted and sick of fighting. I mentioned the word "begging" earlier. Here I am today, again begging our Government, politicians and officials to listen, act and abolish the means test for the carer's allowance, showing us they really do recognise and value the work that we do every day.

Mr. Joseph Musgrave:

I thank the committee for inviting Home and Community Care Ireland, HCCI, to appear before it. HCCI is the representative body for the private home care sector in Ireland. Our members, and their 15,000 carers, enable more than 25,000 people of all ages who need care to stay living in their own homes. I am joined today by HCCI’s policy and communications manager, Mr. Jamie Farrelly, and by Ms Paula Maher, who is the operator of Care at Home, an SME provider which employs more than 100 carers and provides care for 250 clients, mainly across south Dublin. We are grateful for this opportunity to discuss a major barrier to employment in home care. I will focus our contribution on the impact means testing is having on the sector, including on recruitment, the existing workforce and on our clients.

In October 2022, the Department of Health published the cross-departmental strategic workforce advisory group, CD-SWAG, report to address recruitment and retention in the home care sector. HCCI both called for CD-SWAG to be formed and was heavily involved in the consultations it undertook. Recommendation 8 in the report recognises that those in receipt of State benefits are an important recruitment pool for the care sector and, as such, State benefits, particularly carer’s allowance and jobseeker’s allowance, should be reviewed to ensure they do not disincentivise employment. Yet, more than 18 months later, the Department of Social Protection has made little progress on this review and has not shown an eagerness to engage with the sector on this issue. Discussions about home care recruitment often centre on pay. This is something the sector has made a lot of progress on. HCCI members pay an average of €14.50 an hour. Home care workers are guaranteed the living wage and travel time, something HCCI advocated be included in the HSE authorisation scheme, which is the new mechanism that governs how home care is procured. Home care is also, by design, a part-time occupation, with visits peaking between 8.30 and 9.30 in the morning, plummeting in the afternoon and then peaking again in the evening between 6.30 and 7.30. There is more to be done in this area. Home care workers should get further wage increases and be paid for mileage. Nevertheless, it is structural problems like social welfare, lack of a career structure and how home care is commissioned that is driving recruitment and retention issues today. Members of the committee should be in no doubt that social welfare rules around means testing, income and working hour limits are inextricably linked to recruitment challenges in home care, workplace stress, staff leaving the sector and the persistently high waiting lists we see for HSE home care.

National and international evidence shows that people on State benefits and people returning to work are potential recruits. Current means testing deters people from ever entering employment, as even a modest income may disqualify them from essential social welfare supports. We should, at the very least, means-test the individual, not the household, to prevent this. Means testing impacts those in work too. For example, home care workers claiming carer’s allowance face a precarious balance trying to work just enough hours to maximise their income but avoid disqualification from their payment. We know this stressful situation can lead to burnout and to home care workers leaving the sector. That is, they fall into a social welfare trap. This carer turnover affects continuity of care, something that is critical for home care clients. Means testing even impacts those who do not claim any social welfare benefits. When Jamie and I travelled recently to meet home care workers in Monaghan, they were aware that some of their colleagues claim social welfare. They were not resentful of that, but they did say they felt pressure to cover shifts when their colleagues could not because of rules like means testing and working hour limits. There is a certain irony in that when wages recently increased due to the guaranteed living wage in the contract I described, some home care workers had to reduce their hours because that extra income would put them over the means test threshold.

We should end these cliff-edge cut-offs in payments and move to a tapered approach. A HCCI survey found that 85% of home care workers who claim a social welfare support would work an additional three hours per week if their social welfare benefits were unaffected. Increasing the hours a home care worker can work is very achievable. To increase the working limit on carer's allowance by three hours would cost between €50 million and €54 million. This should be done in conjunction with changes to means testing. Those three hours could be the difference between a vulnerable older person leaving hospital with a home care package or joining the long waiting list for home care which currently stands at 5,500. We will struggle to properly tackle waiting lists until we reform our social welfare system.

When looking for solutions to tackle chronic problems in the home care sector like recruitment and waiting lists, we must accept they are intrinsically linked to social welfare rules like means testing. We must also accept that many benefits were designed for a very different labour market than we have today and that the social protection system needs to modernise. We have solutions to reform social welfare so that it fulfils its true purpose to encourage, rather than restrict, participation in the workforce. We would like to see the Department of Social Protection address the recommendation of CD-SWAG to review eligibility criteria for State benefits to ensure they do not disincentivise employment. We join our colleagues in Family Carers Ireland to call for the abolition of means testing for the carer’s allowance. The working limit for those in receipt of carer’s allowance should be increased from 18.5 hours to 21.5 hours. The Department of Social Protection should bring forward proposals to develop the working age payment to replace the outdated jobseeker’s allowance.

I thank the members of the committee again for the opportunity to appear before them. We look forward to the members’ questions.

Ms Carly Bailey:

One Family is grateful for the invitation to be here and we are pleased the topic of means testing is being considered by the committee. We are keen to bring the experience of one-parent families into this important discussion. We acknowledge the recent changes made around child maintenance and the liable relative provision, something One Family and other organisations have long campaigned for. It demonstrates that reform is possible if the political will is there. Lone parent households are consistently over-represented across all metrics: poverty, deprivation, housing insecurity and family homelessness, to name just a few. Lone parents and their children remain one of the most socially disadvantaged groups in Ireland today and have been for decades. Our staff regularly hear from parents who talk of feeling distressed and anxious. They tell us how fearful they are the system will let them down. Too often it does so when they need compassion, trust and support the most.

The social protection system has to be flexible and adaptable. Regarding means testing, we currently have an all-or-nothing situation. If a person earns €5 a week more than the threshold, he or she is entitled to zero. Tapered supports should be considered to prevent cliff edges and provide more certainty. The committee recently heard from Dr. Ray Griffin from SETU, who told them how he had measured the Department of Social Protection’s written guidelines and found that a person would need a university standard of education to understand it. That is a sad reflection of how complex and arbitrary the system is. Parents regularly tell us that even Intreo staff have provided incorrect or insufficient advice to service users. What about parents with low literacy levels, learning disabilities or language barriers? This only adds to feelings of shame, fear and anxiety.

We agree with other stakeholders, including the Citizens Information Board and the National Economic Social Council, that a centralised means testing system is required. Currently, if a person is applying for more than one means-tested payment, he or she must complete multiple applications. This creates undue stress on parents and is an inefficient use of State resources.

Across social assistance schemes, income disregards, income thresholds and the exclusion of particular social welfare payments can differ. We need to ensure any disregards on income thresholds for secondary benefits, including back to school clothing and footwear allowance, national childcare scheme and the medical card, are automatically raised in line with any core social welfare payment rises and the national minimum wage.

Even within schemes, how you earn your living can determine the payment you might receive and can impact on eligibility for secondary benefits, including the medical card. Cliff edges exist in the form of arbitrary age thresholds for the one-parent family payment and the jobseeker's transitional payment. Is it assumed that both the development of the child and the material circumstances of lone parents magically alter once a child moves from six to seven or 13 to 14 years of age? A review of income disregards is needed and the jobseeker's transitional payment should be extended until the youngest child finishes secondary level education.

In certain situations, parents need to apply for basic supplementary welfare allowance, SWA, while waiting for a decision or maybe an appeal for another payment. However, capital thresholds for SWA disregards are much lower than for other payments. Working family payment rules state that a person has to work 38 hours or more a fortnight or 19 hours a week. These hours apply whether the person is part of a two-parent household or is are parenting alone. This situation fails to consider the extra caring responsibilities that a lone parent has. A tapered or graduated version of working family payment should be considered for anyone working, for example, more than five hours a week, but at a minium the hourly threshold should be reduced to 15 hours a week for those working lone parents.

Some child maintenance payments are still assessed as means, irrespective of whether maintenance is paid on time, in full or if it is even paid at all. When assessing for HAP, RAS, the social leasing scheme or local authority differential rents, each council has its own scheme in place. Many still classify child maintenance as assessable income. Income percentages and rent caps can vary, which means that rents can be much higher for some lone parents.

Social housing eligibility is assessed on the basis of strict income thresholds that continue throughout the entirety of people's time on the social housing waiting list. Many feel they have no choice but to limit their earning potential as a result in order to remain eligible. If they are involved in irregular, casual or seasonal work, the Department extrapolates this across the rest of the year when calculating payments. Where employment has ended or hours have been reduced over the course of the year, parents still receive a payment based on an income they may no longer be receiving. We know these anomalies are a result of ad hocand incremental policy changes made over the years.

We believe that a full analysis of the entire Irish social welfare system, including in the context of issues relating to means testing, is necessary if we want to create a fair, equitable and efficient system that is dedicated to looking after us all from cradle to grave. It is our belief that the social protection system should act as a safety net that protects, reassures and helps to build people back up, not one that stigmatises parents, pushes them and their children further into poverty and traps them there for years to come. This, of course, will require significant investment by way of more targeted supports for lone parents and their children, including increases in benchmarked core social welfare rates.

I thank the committee members for their attention and time. We will be happy to answer any questions they may have.

Éamon Ó Cuív (Galway West, Fianna Fail)
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We have two challenges here in the long term and the short term. The question is how you get to a long-term aim in the short term. What we are trying to do on this committee is to balance both. We will make a submission for the budget. The budget is finite. One of the challenges in the budget, if you are Minister for Social Protection, is that you are given a wad of money. Then you have the challenge. Do you raise basic rates or do you change the structure of schemes? Do you focus on a lot of changes across a whole lot of flaws, that have been rightly pointed out here, or do you pick one scheme and go for it? It is all very complex.

We made a recommendation the first year this committee came together to raise the income threshold for carer's allowance to €1,000 for a couple and €500 for a single person being assessed. The other issue we highlighted was the capital. If you had capital in the bank, the way it was calculated right across the system was quite bizarre. They were effectively charging you 20% once you reached a certain threshold. The Minister moved slightly on that. She raised the basic level that is disregarded from €20,000 to €50,000. That made a difference, particularly for a couple, because you can double the figures when you are doing the calculation. The income thresholds have gone from €375 to €450 and from €750 to €900. It has not reached where we were going and that was step one.

A number of points have been raised. I know what everyone wants is to abolish it. That is fine, but then we have to discuss disability allowance and lone-parent allowance and the means tests relating to them. Then there are groups who are in receipt of jobseeker's allowance, and right across the board. There are many things we have to try to cover with a finite amount of money. This is a challenge. The reason we are interested in this in both short term and long term is that if we make a budget submission to the effect that we want €2 billion and a €20 increase in every payment, the Minister is not going to get a blank cheque. As a result, she will disregard what we say. This is the mind game we have to play here. I want to put context on it. The Minister may just abolish the means test next autumn but just for a minute let us presume she does not. Then our choices are to just raise the thresholds, as the Minister has been doing, and reform the means-testing of capital further. I have been a long time proposing that we get the €4 rate and bring it down to €2. I do not like the system at all but most times here things are incremental. As I said, we wanted a higher rate. Obviously, inflation is eating into the rate of €1,000 we set initially. It was a bit more generous.

The third choice, which has been suggested in respect of carer's allowance, is more disregards of tax such as USC, which is not disregarded, and of, for example, mortgage payments. I am actually quite attracted to this proposal because it would help people who are in the situation of caring for younger people - a son or a daughter - over a long period. It helps them because they have housing costs that an older person who would be caring may not have. In many cases, they would own their own homes and if they did not they would obviously be helped in the same way. These are real world, not ideal world, choices but this is not an ideal world. Certainly, from where we are sitting, there are competing interests.

Jobseeker's benefit - although it is actually meant to be the jobseeker's allowance - is the one that has the X's and O's, as I call them, or, in other words, the three working days. The witnesses have rightly asked for reform in that regard. I wonder do they, particularly in the rural communities, come across another syndrome. This is where you would have a couple, one of whom is in receipt of a payment such as farm assist, jobseeker's allowance, disability allowance or whatever. Then the partner wants to go working. The first €60 is disregarded. After that, 60% is taken. The richest person in the country does not pay tax at a rate of 60%. As stated, 60% is taken off the payment and then you hit a wall. Is that an issue in the context of recruiting carers? As I said, it seems to be more of a rural than an urban issue in my constituency, and my constituency is 50-50. I will explain what happens in those cases where you have somebody on farm assist. How the means test relating a couple is carried out is that all the means are taken into account. However, if the partner is working, they disregard €20 for three days a week, which is €60, and then they take 60% of the balance as means.

That is punitive. As I work on an incremental basis - I know where I am going and that I will not get them to jump - I have proposed for a number of budgets a €100 disregard and 50% of the balance. That is not because I think that is fair, but it might be achievable. It is necessary to dangle something we might be able to get. I would be interested in that and specifically in the carer's allowance. I know what the witnesses want, but I ask them to allow for the fact that we will not get there in one go. As a member of the committee, I am interested in where the priorities lie to get to where we want to go if we are going there in incremental steps. As I said, if some Minister comes in and suddenly finds a pot of gold to give them everything they want, I will not complain.

Mr. Joseph Musgrave:

First, on short term versus long term, I neither envy nor diminish the challenge the Government has to differentiate between different groups. That is why we said we would look at increasing the hours worked while on carer's allowance by three hours first to free up time in the system right now for carers. Our priority is linked to getting that waiting list of 5,500 down. If we could get between 3,000 and 4,000 carers working three more hours per week it would be a good short-term win.

Éamon Ó Cuív (Galway West, Fianna Fail)
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Yes, that is fine, but how would it be done? What would be the changes to social welfare?

Mr. Joseph Musgrave:

As we said in our opening statement it would involve lifting the carer's allowance hours-worked threshold from 18.5 to 22.5 hours. That would cost approximately €55 million.

Éamon Ó Cuív (Galway West, Fianna Fail)
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That presumes that someone who is a full-time carer in a house, works as a carer outside the house doing more caring.

Ms Paula Maher:

We have a number of family carers who are in receipt of carer's allowance for a child or parent and they work outside the home for 18.5 hours per week as carers. For them it is important to be able to work and to have that outlet. The difficulty is that if they work even half an hour longer than 18.5 hours, they get punished quite significantly. I have one carer in mind who is a family carer for her young child. She works 18.5 hours per week and the main client she looks after for us is a young gentleman with a significant disability. He is paraplegic from the neck down and looking after him requires a certain skill set which this lady has. On a few occasions, in order to provide cover when we did not have enough carers to look after this gentleman due to sick leave, this lady worked very slightly longer than the 18.5 hours. When she was reviewed, for any week when she had worked even half an hour longer than the threshold, her entire carer's allowance for the week was deducted. As a result, that lady cannot afford to bring her children on holidays this year. She is paying it back as we speak. The effect is twofold. First, this is a significant hardship for her financially, but it is also a hardship for the likes of the client I am speaking about. In order to provide real consistency for people who have significant needs there has to be some flexibility. Increasing the threshold slightly would help in some way towards providing consistency for vulnerable people.

Éamon Ó Cuív (Galway West, Fianna Fail)
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Does Ms Maher have any idea how many people who provide professional care outside the home are also carers within the home taking care of others?

Ms Paula Maher:

I will hand that question over to Mr. Musgrave.

Mr. Joseph Musgrave:

Approximately 60% of our staff claim some kind of social welfare payment.

Éamon Ó Cuív (Galway West, Fianna Fail)
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Yes, but how many get carer's allowance?

Mr. Joseph Musgrave:

It is impossible for us to tell which specific payment they are on.

Éamon Ó Cuív (Galway West, Fianna Fail)
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That is fine. If the witnesses do not know, they do not know.

Ms Catherine Cox:

To go back to what Deputy Ó Cuív said about short-term and long-term goals, I agree to an extent. That is why we are calling for the abolition of the means test and for a new fairer payment to be introduced. In our pre-budget submissions over the past 20 years, we have also asked for increases in thresholds so that we at least bring more family carers into the net. However, we have been calling for this for more than 20 years and honestly the time has to be now. As I said, family carers save our State €20 billion. They feel degraded by the questions. It is a stress on top of a very stressful situation many are already in. It would be very targeted towards full-time family carers providing 24-7 care and we feel the time is right now. In the short term, we want to see more increases in the income threshold and more carers brought in, but the means test needs to be abolished. It cannot be in five or ten years' time. We need to see it in the next two years.

Ms Zoe Hughes:

The Deputy mentioned more disregards around tax, mortgage and extra payments. The important thing to remember is that there are many examples - the Deputy would probably know better than I do - in the group of people who talk about how it is upsetting that there does not seem to be any recognition of the significant additional costs families in these situations who are in receipt of carer's allowance face, not only because they are not working, but because they face additional costs. I am not an expert in financial policy. That is not my area. I am in social policy. However, if there were some way to account for that in the disregarding process that would be very helpful. That has to be balanced, however, with potentially becoming a more invasive application procedure. If people have to go through exactly how much everything costs, that puts additional costs on everyone's time. We need to find a balance between acknowledging that people need money to live and be supported and that families in receipt of carer's allowance have additional costs that other families simply do not have.

Ms Karen Kiernan:

One of the things we know is that child poverty is an important framework for the Government. The new child poverty and well-being programme office in the Department of the Taoiseach is welcome. We have used that as a guide in thinking about invidious choices that Departments like the Department of Social Protection and the rest of the Government have to make about how to spend money. Where are the poorest children? How can we provide the biggest impact and support for them? I encourage the committee to also consider that. The Department has gone through a slow but welcome process and is now removing the assessment of child maintenance from social welfare payments which is fantastic. It means parents are now not forced to go to court. There are many benefits to that, but there are a lot of secondary payments and more needs to be done in that area. That will all have a positive impact on child poverty levels.

We encourage the committee to look at the non-care issues. Many lone parents are carers. There are more people with disabilities in one-parent families than in two-parent families. Part-time careers, such as being a professional carer would suit many lone parents if the system permitted it. There is a lot of intersectionality between people whose families are reliant on social welfare in the short term or long term, depending on their circumstances.

Éamon Ó Cuív (Galway West, Fianna Fail)
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When you look at the literature, one thing that becomes absolutely obvious is that single parent families are the poorest in the State. Again and again that comes out in all the literature. This committee is conscious of that. General rates of social welfare are important but also anything that inhibits additional income - you start climbing out you get clawed back - has to be absolutely recognised. That goes for means disregards and so on. Ms Kiernan made the point well about what the statistics and all the reports tell us about single parent families. I wanted to make that point. It is not really a question. It is something that often gets overlooked. I remember over the years when budgetary issues come up, the finding the pot of money syndrome seems to always be there no matter how good things are. There are more demands than money. The inhibitors to people getting involved have not been tackled to the level they should be.

Donnchadh Ó Laoghaire (Cork South Central, Sinn Fein)
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That is a good place to puck off. The Barnardo's report published this morning highlights the risks of poverty that exist for many families. People with disabilities and single-parent households remain most at risk.

I have a number of questions. Before posing them, I take this opportunity to thank Ms Skelly for her contribution, which reflected the fact that we have a number of matters to consider from a policy point of view. The first of this involves doing what is right by carers. Second is the need to look at the big picture in order to ensure that there is enough support and coverage in terms of the carers. In my experience, nobody is involved in caring for the money. Most people are doing it out of love, duty and responsibility among other reasons. I am conscious of the fact that other western countries are increasingly talking about a crisis in care. We have a system whereby, in one way, we are fortunate that so many family carers are in a position to assist. In other ways, we rely too heavily upon that and expect too much of family carers. The system is not helping them in an adequate way. The proposal relating to the means test is well worth considering. The committee consider such a proposal in the past. It will form an important part of our report at the conclusion of this process.

I have a specific question for the HCCI. In the context of the hours we are talking about, I am trying to imagine the direction from which the Department of Social Protection, Community and Rural Development and the Islands is coming at this matter. I have not had a direct conversation on the matter with the Department, but what is happening closely resembles the position relating to cut-off for the working family payment. Is that a coincidence? It might be a complete coincidence. However, is the Department conscious of a relativity in that regard when that cut-off point is reached? This is something the HCCI has talked about for some time. It certainly does not suit everybody, but it makes sense for those people who are caring at home and who want to work as carers outside the home, be paid for doing so and have an independent income. That is how they choose to get it. Obviously, the rigidity that exists is a major obstacle. Does the HCCI have any indication that the Department is going to budge on this matter?

For the other organisations represented here, have there been any encouraging discussions regarding the means test? I welcomed the fact the threshold relating to the means test was increased last year. However, the witnesses' organisations are looking for it to go a bit beyond that. Have there been any encouraging discussions with the Department in that regard? Do any of the organisations have observations on the mix of doing what is right and supporting carers properly and the strategic challenge that exists in other countries but that could arise here in terms of the care system generally? Is that something the Department needs to consider when it reflects on the means test and whether the current system is sustainable? Is the system sustainable? If it is not, are the Departments of public expenditure and Social Protection aware of that?

Mr. Joseph Musgrave:

The short answer is that we have not had encouraging conversations with the Department of Social Protection. We have written twice to the Minister saying we would like to meet her or her officials, because we understand she is busy. Both times, they did not agree to meet. The Department's position seems to be twofold. First, in the context of CD-SWAG recommendation 8, it some of its remarks, it has mistakenly stated that this is eighth on the list of things to solve. That is not how CD-SWAG worked. It said there are a number of recommendations which need to be progressed. The Department is hiding behind that quite frankly. Second, being too conservative is the enemy of the good here. The Department is so worried about the systematic implications of doing this for certain segments that it is paralysing it from taking action at all. Rather than try it and see whether it leads to the sort of systematic implications we are worried about, it just is not doing anything at all.

Donnchadh Ó Laoghaire (Cork South Central, Sinn Fein)
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Will Mr. Musgrave elaborate on that? Does he have a sense of the systematic implications that the Department, rightly or wrongly, is conscious of? What kind of issues is it considering?

Mr. Joseph Musgrave:

One of the issues it is worried about is what will happen if it increases the hours in particular or the income limit. It is concerned that if it makes this specific to something like home care, other industries and sectors will say that it should be bumped up for them as well. The Department would then be in a position where something that should have been a support would, from its point of view, turn into an income support or a work support. One of the Department's points is that it would be subsidising low-wage work. The point we made is that members of our organisation, such as Ms Maher, pay €16 or €17 an hour. She pays more than is paid by the nursing homes in her area pay. The debate in our sector has moved past this old view that it is just low-or minimum w-age work, which is not the case.

Ms Carly Bailey:

To broaden it out and look at the bigger picture - potentially, this is what the Deputy is trying to get at there - it is about how the Department of Social Protection operates and about the siloed nature of that. It is also about how, for the families we are all here to represent, we have to deal with different Departments. For example, the Department of Social Protection is responsible for certain payments and the Department of housing is responsible for others. Then there is the lack of accessible housing, potentially, and of publicly funded childcare, and the costs relating to both. It is even difficult to access childcare anymore. There is a lack of services for children and adults with disabilities and complex needs and of resourced schools with enough special education teachers and special needs assistants. It is all interconnected. That is why we are looking at the system as a whole. I am not suggesting that it will be fixed overnight in one budget. However, it needs to be looked at in the round because, otherwise, it will not be possible to fix the system effectively in order to make it work for families and individuals.

Ms Zoe Hughes:

I will answer the question on the strategic challenges that exist. I would say that it is definitely outside of the Department of Social Protection. At the various events we attend in order to advocate for change around social protection, we are often asked whether a €5 increase in a weekly payment would be what we would like or would we like an increase in funding for services across the board. Most family carers, from a strategic perspective and from experience, would say that having better services across the board would be more helpful in the long run. That is not to say that an increase in rates would not be welcome. Of course it would, particularly because of the financial challenges people face. Looking across health, education, transport and housing, however, those are all issues that family carers also struggle to manage. An extra €5 or €20 a week would obviously be welcome, but it would be better if people did not have to pay extra out of pocket for things such as transport. For example, the new scheme for transport still has not come in as a replacement for the motorised schemes. That has been going on for the past ten years. Transport is a major problem, particularly in rural areas, in the context of people who need to attend medical appointments getting access to vehicles, etc.. An increase of €5 a week will not necessarily help in that regard, but having access to transport and proper infrastructure would be extremely beneficial for so many families and carers.

Ms Catherine Cox:

Going back to the question as to whether the Minister and the Department are engaging, I would say that they are. The Minister set up a cross-departmental group to look at the impact of means testing on carer's allowance. We will be making a presentation to that group in the next two weeks in the context of the participation income scheme and what that might look like. A really good paper on that was compiled by us in conjunction with Maynooth University. Members of the Regional Group, including Deputy Naughten, support the introduction of a participation income and what that would look like. The latter would allow us to get over many of the problems we are talking about in regard to the system of means testing. It would also put care work where it should be, namely as a valued contribution to our society. That is positive.

The other question was on whether the current system is sustainable. No, it is not. There are 500,000 carers. Many reach burn-out because they are not getting the supports they need - not just financial supports but also services, such as health services. People are obliged to pay for therapies privately because they cannot get them otherwise.

Have things improved? Yes, but many family carers are not yet feeling that.

On another point raised by Mr. Musgrave, as well as the issue of family carers wanting to take on employment outside the home there is another social welfare rule which completely eliminates people working outside the home for more hours than they do. At the moment, if somebody works three full days a week and work seven hours each day, he or she can still get social welfare for the other two days. However, if that person decides to work two hours a day, say, for five or seven days a week he or she could not do it. Such an arrangement would work really well to attract people to our care sector, where we are urgently crying out for home care workers, for example. A simple solution would be to change the social welfare rule from days worked to hours worked as it would encourage more people to work in the home care sector and, in turn, support family carers in the home.

Donnchadh Ó Laoghaire (Cork South Central, Sinn Fein)
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I must leave but I will return for the end of the second session. I would like to ask HCCI about that point, which has been really well made. I have talked to somebody from the Citizens Information Board who highlighted how the policy is arbitrary and illogical. Can our guests state whether there is a sense of what additional capacity would be created by a shift in the policy?

Mr. Jamie Farrelly:

The working age payment is in development and it would address a lot of the issues. We were supposed to hear more about the payment by the end of last year. I hope that we will hear more on the payment soon because it would make a huge impact.

It is difficult to get a sense of the impact of the payment. For example, we know that 85% of home care workers who claim a State benefit would work two more hours. There is also a cohort of people who are completely outside the workforce which means they do not engage with means testing and these rules. All the international evidence from the OECD and the Cross-Departmental Strategic Workforce Advisory Group, CD-SWAG, report says that people in receipt of State benefits are an important recruitment pool. Therefore, the payment could have a huge impact.

Mr. Joseph Musgrave:

I will discuss the possible ballpark capacity figures. Let us consider the most conservative estimate. Half of the people said they would work additional hours. If only half of them worked additional hours, that would be 10,000 additional hours per week. If we take into account four weeks of annual leave, that is 400,000 hours. So this one change would give an uplift of 5% in care hours across the system.

Mark Wall (Labour)
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I welcome all our guests. Like Deputy Ó Laoghaire, I welcome Ms Skelly, in particular. I thank Ms Skelly, Ms Bailey and Ms Maher for their testimonies. As we always say here, lived testimony is very important when it comes to everything we do here. It was very important for us to hear their testimonies this morning.

I have encountered multiple issues with carer's allowance in the recent past. One of the biggest issues to arise - I am sure our guests have encountered it as well - is that a person in receipt of a jobseeker's payment who applies for carer's allowance gets his or her jobseeker's payment cut straightaway and then must apply for an SWA. In the last two or three months I have encountered multiple cases of this happening. This situation is causing immense stress to the people who have applied and are looking after loved ones. I do not understand why the jobseeker's payment for these people has been cut. I understand the reason given by the Department but I do not understand the discrepancy. People in receipt of disability allowance continue to receive that allowance until a decision is made while a person in receipt of a jobseeker's allowance who applies has his or her payment cut straightaway, thus creating the necessity to fill out more forms, which is a huge problem for all of the families I am dealing with. Therefore, we, as a committee, need to examine the matter.

This morning the cliff edge was mentioned. Yesterday I spoke to a lady who told me about her carer's allowance being under review. This is an issue that crops up repeatedly. She said: "It feels so degrading to be targeted. I am burnt out and tired, and I am being questioned on the little bit of money I get every week, which is never enough to pay for all the bills and the costs of living." That is exactly one of the issues mentioned by our guests this morning. I do not understand why these people are targeted because those who receive the carer's allowance and the people who care for loved ones have not seen any changes in the care they must provide 24-7. That is the burnout that has been described by our guests here this morning.

I wish to ask a few questions. On the participation income, I am aware of the recent Dáil debate and we had a debate in the Seanad as well. I would like Ms Cox to give details on the income, such as how much would it be and, for anyone who is unaware of the Dáil and Seanad debates, some more details.

Deputy Ó Cuív has mentioned the choice concerning the unlimited or limited pot. Ms Cox mentioned the PBO estimate of €375 million. She also mentioned, as she always does, the €20 billion that carers save the State. To me, one outweighs the other by multiples. I ask our guests to explain what €375 million would mean for their organisations. Any information will inform this committee when we compile our report.

I wish to mention one-family payment and raising the age limit. The payment is something I encounter in my clinics on an almost daily basis. What would raising the age limit mean for one-parent families? I know from considering the transition and analysing social welfare payments that there is stress. These are the issues that we, as a committee, need to examine because one can put a figure on money and on a lot of things but stress is inflicted on people as they must fill out forms and go to the offices of the Citizens Information Board, and to all our offices. One can never put a figure on that and I know that the organisations present deal with this matter on a regular basis.

My last question is a general one. We touched on this issue this morning. As this committee considers the means test for social welfare payments, is there something outside of that we need to get from yourselves to improve the number of carers who are in the system and, more importantly for me, keep carers in the system? What I hear on a regular basis from people who come to my clinics is that they must give up a payment because of the potential to lose X, Y and Z, be it a medical card or a payment. Do we, as a committee, need to examine this matter? I regularly have this conversation with people who are in the system caring and reach the cliff edge which was mentioned here this morning. Perhaps we, as a committee, should give this matter some consideration because it is a huge issue for many carers.

Ms Catherine Cox:

We have conducted research on the participation income with the University of Maynooth and it was recommended that a group be established. The Minister has started to consider the creation of an interdepartmental group. The PBO has estimated that the cost will be €375 million. Two years ago the estimated cost was €390 million. Given the social welfare changes in the carer's allowance last year, the cost has reduced. Plus, as the Senator has stated, carers also save the State €20 million.

If anybody wants to look at our report, Towards a Participation Income for Family Carers, they will see that it outlines how a scheme would work. In respect of what Deputy Ó Cuív said, we have looked at this over the long term but we need to see this in place in 2027. In the meantime, we need to continue raising issues like the income disregard and ensuring the carer's allowance is no longer a taxable income. It should not be a taxable income. There are lots of tweaks that could be made to the system which would bring more carers in and allow us to move towards the day when the means test on family income is abolished. The means test must be abolished because carers contribute so much to society and health services. The work of carers reduces the need for people to go into hospital. Carers reduce pressures on the health system yet carers continue to be undervalued, unrecognised and unsupported.

On the establishment of a cross-departmental group to consider the means test, it is not just the job of the Department of Social Protection. It is also a matter for health, disability and education. It involves the Department of Education because it is everything that carers fight for to get their child a school place and secure therapies for their child. Analysis by a cross-departmental group will mean the issue is considered in a far more holistic way. Social protection and income support are key to all of that.

Mr. Joseph Musgrave:

The Senator was bang on with his third point, which will be addressed by my colleague, Ms Maher.

Ms Paula Maher:

I would say that, yes, that is an issue. We have carers who feel they need to leave because they feel they are in a trap.

In respect of the current social welfare situation, one of our young carers came to me recently to tell me she is considering leaving. She is a young single mum of three children ranging in age from two years to nine years. She is in receipt of the working family payment. During her renewal, one of her payslips showed that she had worked additional hours. To pay for her child's communion, she tried to earn a bit of extra money. As a result, her payment was reduced from €160 per week to just €60.

That change was flagged to the one-parent family payment office, which cut her by a further €100. She is now €200 a week worse off and is in significant financial hardship. On one occasion, she had worked just under the 19 hours because her infant was sick and she could not leave the child, and she was told she was not eligible for the payment because she had not worked 19 hours that week. She is kind of at the point now where she said there is no point as she is being penalised so much.

Ms Carly Bailey:

To echo that, we talk with people all the time and these ideas around shame, anxiety, fear and uncertainty - basically creating poverty traps. It is really difficult to exit a poverty trap. The system is creating those poverty traps and it is just not doing enough to help people out of those, which is what we are advocating for. There are also many reasons somebody is parenting alone. There are all sorts of reasons, including relationship breakdown or maybe the death of a partner. Very often, it can also come as a result of domestic abuse or coercive control. We already have people who are potentially very vulnerable, upset and there is a lot going in their own lives. If the extra burden of bureaucracy, the uncertainty of it all, the stress, having to reach out to HCCI, One Family Ireland and others is added in, it is a constant issue. We were just talking before we came in about somebody who is having an issue at the moment and I believe my colleague said it has been going on six years. She just keeps giving up multiple ways along the way because it is just too overwhelming and gets too much that she has to put it away for a little bit and get on with something else. It is taking time away from their child. As an example, if a person's youngest child is under the age of seven, he or she is on a one-parent family payment and perhaps eligible for the working family payment if he or she is working more than 19 hours a week, but there are issues around that regarding whether he or she is employed or self-employed and whether it is seasonal, it has to be almost like a constant fixed income and this is what we are talking about here.

There is no in-between or flexibility allowed in the system and that often does not work for parents in our situations. When that child moves to the magical age of seven, suddenly everything changes. Of course, it does not. If anything, as the child gets older, we know from all of the evidence that it actually costs more for children who are over the age of 12, which is why the qualified child payment has been differentiated in that way. The evidence is proof of that. A parent also has to move from the one-parent family payment to the jobseeker's transitional payment at that point in time and he or she is no longer eligible for the working family payment. A parent has to wait, potentially, there might be a review or an appeal and he or she has to apply for a social welfare assessment, which is another means-tested payment and a parent is only allowed to have a certain amount of capital means, which is only €5,000 whereas for the one-parent family payment and other payments, a parent can have €20,000 before it is taken into consideration. There are often many people who end up not being eligible for this emergency payment. It is not being made available for those of whom need it the most because of that. Realistically, for us, the jump to jobseeker's transitional payment would be improved by allowing it to be paid to people with children in full-time education. That is the obvious thing to do. People will then be encouraged to work. Were we to make some changes around the working family payment, it could be made eligible for that particular group. Thresholds can be reduced or tapered in order in a much more flexible system. That is very easy to do and could be done in budget 2025 for sure.

Mark Wall (Labour)
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I am happy with that. I do not wish to speak.

Éamon Ó Cuív (Galway West, Fianna Fail)
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May I ask a few questions?

Éamon Ó Cuív (Galway West, Fianna Fail)
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Would it be a help were we to abolish the transitional payment and went back to the one-parent family payment and made it payable up to the 13th birthday?

Ms Carly Bailey:

Yes. It has just added an extra layer.

Éamon Ó Cuív (Galway West, Fianna Fail)
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We could abolish it and cut the messing on it.

Ms Carly Bailey:

It has brought in the work activation part of that. We all agree that there was an issue regarding the low employment rates among people who were parenting alone, but it was brought in during the austerity era in 2013. We were told at the time that childcare would form a massive part of that. It did not and it still has not. There is no individualised subsidy for people who are parenting alone. With one income coming in, however, that is brought in by the social welfare work or a combination of the both. Let people work their way out of this. Allow us to work with people and provide pathways out of that poverty. That would be really important.

Éamon Ó Cuív (Galway West, Fianna Fail)
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The old argument of "the sun versus the wind" comes to mind for this problem. The sun follows the wind.

Erin McGreehan (Fianna Fail)
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I welcome the witnesses and I thank the Cathaoirleach for allowing me this space as I am not a member of this committee. I am on the Joint Committee on Disability Matters and we hear about disability, carer's allowance and how it is designed and as was articulated, quite often it is seen as a punishment and penalty on many families and that the practicality of caring is ignored or not looked at. Ms Skelly spoke about forcing people into poverty and the insult to injury and when we are speaking about caring for a family member and support from the State, those type of terms are not the ones we should use. It should be "We support you", "We understand you" and "We appreciate you" and carers should feel appreciated for that care.

I have a question for Ms Cox. Are there similar payments in other countries or is there a best practice that we should consider? Regarding participation income, the report mentioned assessment criteria. Could she elaborate on what that assessment criteria would be as opposed to means-testing? We all see that means-testing is harsh and there is a cut-off point. If means-testing is incorporated with the ancillary benefits, how does that compare to the participation income? Were we to change means-testing with increased thresholds and the extra supports that are around such that if a person is in receipt of X, he or she would get extra, how would that compare?

Ms Catherine Cox:

On best practice, Finland and Austria both adopt good practice and are mentioned in the participation income report. Austria has a tiered payment. I think it is between €1,200 and €1,750 per month, depending on the level of care. Somebody could be providing full-time care but perhaps caring for a profoundly disabled child and the payment is higher in that situation. They are two countries that would be good to look at regarding best practice. Regarding the assessment criteria, there are a number of issues around the carer's allowance at the moment. First, it is means-tested, but it also looks at how many hours of care are being provided. I imagine something like that would remain for participation income; it would look at however many hours. If somebody is providing more than 35 hours per week, they are caring full time. There are 168 hours in a week and many carers, such as Ms Skelly, are probably caring 24-7. That would be one way of looking at it. The other criteria under the existing scheme include habitual residency and, again, the issue is whether that would remain or change. The one that Mr. Musgrave mentioned is the 18.5 hour threshold. We would like to see the 18.5 hours that can be worked outside the home addressed because, as has been said, in some cases, a carer, perhaps with a child with a disability, may be able to work outside the home and may be able to have additional income in their home, which would support that family. Those need to be addressed as well within the criteria. It would be based on medical grounds, including whether the person is providing full-time care and the need of the person being cared for. It would be a needs test, as opposed to a means test.

Erin McGreehan (Fianna Fail)
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To follow up on that needs test idea, we have a Green Paper on Disability Reform. That is the exact reason the Green Paper was scrapped to ensure a medical assessment of the person as opposed to something else. The best practice that Ms Cox mentioned, such as tiered payments based on medical need, is something that we no longer have, thankfully, as it was a win for disability groups to get that deleted and to examine a social model, as opposed to a medical model. There is a conflict there. I understand why we would do that, but how do we reconcile that contradiction, as advocates for carers and people with disabilities?

Ms Catherine Cox:

It goes far beyond just the medical assessment. It is looking at the medical area as one area. It is looking at needs and the level of care provided, what other supports are in that family and whether people are getting support from the health services or other services. It is absolutely not just a medical model. It is moving towards the social model. There is a model that Ms Hughes spoke about before. It is not purely based on medical needs.

Ms Zoe Hughes:

In regard to best practice, those examples are really good. The Nordic and Alpine countries are the ones to look at. A really important aspect is that within those countries, health and allied systems are much stronger and much better funded. They are better available to individuals. Many of those systems are run under municipalities so services are local to the area. The level of payment in a particular municipality will take account of what services are available to individuals within the municipality. It is worth noting that it is not just about pure numbers because we have in some ways one of the highest blanket rates of payment for one-off carer's allowance, not bee hives. That does not mean we have the best system by any stretch. That is a point worth noting.

The second point was around the Green Paper being scrapped. I understand exactly what the Senator is saying about this idea of medical need. We are definitely not in support of that hierarchy of needs in particular because that paper was around employability or the ability to work. Looking at assessment of needs and how much medical or allied care that a person needs from a family member will disrupt that family member's ability to go into the workforce or to acknowledge that level of support. Again, the model that crosses the social and medical models is often the ecological model that takes parts of both. It is about looking at people as the whole of their parts. Many disabled people have significant medical needs but there are also many who do not. It is about fixing, such as bringing ramps in and improving accessibility. That is not going to mean the person does not have medical needs that cannot be solved by that means. It is about trying to see that as a kind of a holistic piece. That is an additional piece I would add to that.

Ms Fleachta Phelan:

I thank the Cathaoirleach for the invitation to speak to the committee. DFI is a federation of over 120 disability organisations across Ireland. A handful of members are attending with us today. Both Family Carers Ireland and Care Alliance, which the committee heard from earlier this morning, are members of the federation. To inform our input into this committee, I held a short focus group with members on the impact of means testing on the communities they serve. First, it is important to remember the context. The social protection rates currently provided to disabled people are insufficient, especially given the extra costs with which they live with. Last year, one in two people, or 44.7%, who were unable to work due to a long-standing health condition, which includes disability, lived in deprivation. This means they were unable to afford basic essentials. This is shocking and cannot be allowed to continue. We can and should make different policy choices.

I note that in an earlier hearing, the Department of Social Protection highlighted the effectiveness of our social protection system at alleviating poverty and in that discussion, it cited recent SILC data but the "at risk of poverty" rate for those unable to work due to health problems is almost three times higher than the national average at 27.3% compared to 10.6%. This shows that our system is not delivering for people with disabilities who cannot work and that we need to make changes.

Means testing in particular compounds and perpetuates this. At an operational and administrative level, there are many issues, which Ms Porter and Mr. Hannafin will outline. Echoing what the committee heard earlier in the care discussion, one individual described the experience of submitting to means testing to me. They said, "You feel degraded, like you are begging". Unfortunately, the experience for thousands of applicants every year is that they get refused on the first instance and have to appeal. In 2022, 43.2% of disability allowance appeals were allowed. This was the highest "allowed" rate for appeals across all payment types. We see this pattern year in, year out. The experience of means-testing reviews also causes difficulty for families that are already struggling. Our member Down Syndrome Ireland reports many of its members being reviewed and losing supports in recent years in spite of the ongoing cost-of-living crisis and the many disability-related costs that households live with.

People with disabilities are means tested based on the incomes of those they live with. This includes family members, romantic partners or housemates. This creates a form of financial dependency and denies people’s right to independent living. It perpetuates an assumption that disabled people should rely financially on parents or siblings for the rest of their lives and that families will absorb the extra cost of disability. In the context of romantic relationships, this is often referred to as the "love tax". If a person with a disability moves in with his or her partner, he or she may lose some or all of his or her supports due to his or her partner’s income despite still being disabled and having all the same costs he or she had before. Some European countries like Belgium have changed this in recent years. Unfortunately, this is also, as one of our members describes it, "a recipe for domestic violence" where a disabled partner is in a situation of financial dependency and has to ask his or her partner for money rather than having his or her own independent income. This is particularly problematic because we know that women with disabilities are much more likely to experience domestic violence.

Another issue that came up earlier this morning is the absolute nature of means testing thresholds and the cliff edges. For example, Cystic Fibrosis Ireland supported someone recently who was refused a disability allowance due to their household income being €4 over the threshold. The impact of this for the individual was financially devastating. At a minimum, there should be a tapered approach and a consideration of partial rates.

Ireland has one of the lowest disability employment rates in Europe and this is not unrelated to means testing and the loss of supports. The fear of loss of a medical card is a huge barrier to disabled people taking up work. Medical card entitlement should be based on medical need rather than means testing - something the OECD has also recommended.

In the majority of European countries, disabled people do not lose their disability supports when they work, unlike in Ireland. This is also why the income of people on disability payments tends to stay around the income disregard levels because the risk of losing other supports is too significant. The income disregard levels should increase, as should the means allowance for those who cannot work, to allow for other small forms of income, such as pensions from parents, inheritance and so on.

One positive of the disability allowance is that, relative to other payment schemes, it has a higher capital disregard, which is an acknowledgement of the extra economic vulnerabilities that disabled people live with. However, that has not been reviewed since 2007, despite huge escalations in costs since then, particularly in housing, which affects those saving for a deposit, as well as the recent high levels of inflation. This can also cause trouble for people moving across schemes or awaiting the outcome of an appeal. I have heard from a lot of disabled people who have been refused applications for additional needs payments and told to use their hard-earned savings instead. These are savings that they are keeping to deal with medical contingencies and other unexpected developments.

To better support disabled people with the very significant extra cost of disability and ensure they do not continue to live in deprivation, we could take a range of measures. We should start assessing the cost of means-testing. Deputies mentioned this earlier in the context of removing means-testing for family carers. We should consider moving to universal payments but at minimum, we should have a much higher household income cut-off point and should be explicitly factoring in the extra costs of disability. Disabled people should be means-tested only on their own income and means, not that of their family member, partner or anyone else living in the household with them. We need to provide a medical card and other entitlements like the free travel pass based on medical need and disability status. These should not be means-tested. There was a discussion earlier about 20 years of demands. We need to bring in a cost of disability payment. This demand has been around for at least 30 years, originating with the Commission on the Status of Persons with Disabilities in the mid-1990s. We need to introduce a non-means-tested, universal cost of disability payment of a relatively meagre €40 a week, starting with social protection recipients. We need to develop tapered supports for those who may be just above the cut-off rates to address any cliff edges. Consolidation of means testing would also be welcome. This came up in previous hearings. Many disabled people have to fill out separate forms when applying for different supports from the State such as medical cards, the fuel allowance, or the housing adaptation grant, for example. Reducing this duplication would save time, administration costs for the State and stress for the applicant.

Finally, I wanted to briefly mention energy poverty because I know the committee has had discussions on this issue previously. I want to draw attention to the much higher levels of energy poverty that disabled people live with because of low incomes, high costs and their higher energy needs and requirements. Every year we see this in the annual energy deprivation indicators. The data shows a very significant increase in energy poverty between last year and this year, so we need to keep a watchful eye on that. We need to consider disabled people's needs when we are developing policy around energy poverty.

Ms Sandra Porter:

I work as the financial well-being officer for the Huntington’s Disease Association of Ireland. Huntington’s disease is a rare, inherited, and highly complex neurodegenerative disease that places a huge burden on families affected. My work involves supporting individuals and their families as they navigate the system and seek to secure their family finances in their changing circumstances. I see first-hand how challenging, difficult and stressful this is for families and it is particularly challenging if they have dependent children.

Many families experience a financial burden ranging from extreme financial stress to poverty due to the degenerative nature of the disease. This is directly linked to both a person’s inability to hold down employment and a lack of access to financial supports due to means testing. Means-testing is a very arduous process for a person experiencing cognitive or mental health difficulties. A claim refusal is devastating for a person in need of support. The disability allowance application process is already very stressful, confusing and difficult, and the idea of making an appeal is exhausting and daunting to most. The removal of means-testing would make supports more accessible and remove this burden for people with Huntington’s disease and their caregivers, who often struggle with their altered family circumstances. The current means test system requires a deep level of household income poverty to be eligible for disability allowance, with household income calculated on a gross rather than net basis, with no consideration of mortgage payments, rent or any other financial obligations. Our social protection system needs to understand that people living with a neurodegenerative disease will not be able to sustain paid employment and, therefore, it is imperative that welfare payments are sufficient and accessible to cover the extra costs of disability to protect them from poverty.

The stark reality is that while people with Huntington’s disease struggle to keep up with prior financial commitments, they also have to worry about a bleak financial future. Families with a parent living with Huntington’s disease may fall into poverty during the period when the person is not able to maintain his or her employment. Due to cognitive or mental health changes a person may be unaware of, or in denial about, his or her condition and so refuse to seek disability supports. This leaves the household subject to extreme financial stress or poverty, depending on each family’s situation and whether they have savings or investments, with mortgage and rent obligations being an immediate area of concern. In the majority of cases, people living with Huntington's disease will leave work due to their undiagnosed symptoms and they often fall through the cracks of social welfare payments. A number of years may pass before a diagnosis is confirmed. At this stage, the person and their family may believe they are not eligible for an invalidity pension as they did not make their claim in the prescribed time. People living with Huntington’s and other neurodegenerative conditions may have worked for all their adult life, for decades, up until the point their symptoms manifest.

I would like to offer some recommendations and suggestions around gaps and anomalies in the system that I have seen in my work supporting people with Huntington's disease and their families. We should remove all means-testing of disability payments for people living with lifelong and degenerative, life-limiting conditions or at a minimum, remove means testing for a household income of less than €100,000 per annum. We should provide an increased universal, non-means-tested, non-taxable payment with an automatic entitlement for people with lifelong conditions and degenerative, life-limiting diseases. We should recognise the cost of caring and living in the allowable deductions and in any remaining means assessment, income should be assessed on a net basis. We should consider the cost of disability and the risk of future disability in the case of hereditary diseases and the resulting need for families to save carefully. Consideration should be given to the provision of an enhanced support system for people with disabilities, including an independent, holistic advice service that helps people with their claims, to replace the current system of signposting with direct referrals and warm handovers for applicants with greater support requirements.

On the issue of savings and the impact on means-testing, in the majority of cases when a family has saving set aside, this is for a profoundly important reason, which is to provide care for adult children, grandchildren or siblings living with Huntington's after this person has passed away. There may also be a fund set aside for funeral costs. There needs to be more consideration of how inheritance and disability allowance can coexist. A person-focused approach is required to understand the long-term needs and costs of a person and their family living with a disability. People living with Huntington's disease and many other conditions will need any savings they have accumulated over their working life to pay for the high costs of the multidisciplinary care that is essential to extend and improve their quality of life or the life of a loved one. Specialist multidisciplinary care is not automatically provided by the State and Huntington’s families have to bear this cost. In many cases, they cannot afford to give the level of care their loved one requires and deserves.

The current means test system also forces people living with a disability to be financially reliant on their partners or family. They will have lost so much already and the removal of their financial independence can cause huge stress and distress, depending on their family situation. This increases financial strain on the family household and sadly, in certain extreme situations, a person may become homeless, malnourished, or vulnerable to exploitation.

A member in the previous sitting mentioned possible incremental changes. HDAI can make recommendations on incremental changes and the gaps we have observed. The introduction of a separate cost-of-disability weekly payment of €40 would be welcome. The homemaker credit scheme should be considered as reckonable for invalidity pension. An automatic transfer from disability allowance to the contributory State pension for people with life-long conditions would remove the burden on families of the pension means test process and the tax on invalidity pension and carer's allowance should be removed.

Ireland should move to a person-centred and person-outcome-focused approach to disability supports, particularly for people who have more complex and poorly understood symptoms. A holistic approach to assessment is imperative, as is enshrined in the UNCRPD.

Mr. Padraig Hannafin:

I thank the Chair and the committee for inviting us to present our views on means testing. I come before the committee with both professional and personal experience of means-testing. I work as public affairs research administrator for Rehab Group and, on a personal level, I have a spinal cord injury. I am paralysed from the chest down and have used a wheelchair since the age of 16.

If means-testing is to remain in place it needs to evolve into a more accessible process for people, any and all cliff edges that decimate a person’s income overnight need to be removed, the independence of the individual needs to be recognised rather than their household income being assessed and the true cost of disability and the at risk of poverty status of so many people with disabilities need to be recognised.

My most recent experience of means-testing came shortly after I got married in August of last year. My change of circumstances led to me being means-tested for my disability allowance in September. My application to retain my disability allowance was refused, my first appeal was refused and only on my second appeal was my disability allowance finally reinstated at a reduced rate the following February. I have no literacy issues or a learning or intellectual disability and my wife is a qualified special needs assistant, yet both of us struggled to fully understand and grasp the information given to us at each stage of the whole process. Much of the information was black and white, cold and blunt. The outcome of my application and appeal was delivered over seven pages of complex information at each stage. While neither of us understood fully what was wrong, we knew that something was not right. In the end my local TD discovered the Department had assessed my wife's fortnightly wages as weekly. Within 24 hours, my disability allowance was reinstated at a reduced rate with a letter of apology. While I was relieved to have my disability allowance and travel pass back, all I could think of were some of our service users. Many of the people I have met in focus groups who have literacy issues, cognitive issues or issues with confidence would not have been able to dispute the original result on their own or have had the confidence to challenge what is routinely a first refusal.

When Rehab advocacy officers help the people they work with to apply for the disability allowance they now tell them they will almost certainly be refused on their first application. The information provided throughout the application process did not come with an easy-read format. It did not come with support information or any direction as to where support could be found. It did not come with a phone line where clarification could be sought on certain issues or with information about outside services that could provide support in the application or in any subsequent appeals. My broadband provider recognises the difficulties some people with disabilities face with complex and technical information, so it provides a disability-specific customer care line in recognition of this. Means-testing does not.

The means-testing process needs to be more person-focused, with an understanding of the individual. One Rehab service user living with her parents lost both her travel pass and her sole income of disability allowance after the household income was taken into account during means testing. This woman’s independence had been limited due to her having to live at home in the first place, but it was shattered after she lost her only income and her travel pass in one go. She had attended a RehabCare service during the week but had to reduce the days she attended due to the €12 total daily cost of travel to and from the centre. Means-testing the household did not take into account her right to be seen as an individual trying to live an independent life and has negatively affected her life dramatically.

The travel pass and medical card are seen as auxiliary supports to disability allowance but for people with disabilities they are lifelines. Recently, six Rehab service users had not applied for medical cards until they met their advocacy officers due to being so daunted by the means-testing application process. Others had not applied for appeal as they did not understand they could do so and another said “Dad said we will leave it alone because we will be means-tested.” The advocacy team’s feeling is that the system is designed to be off-putting and unapproachable.

As I said, if the means test remains in place, the following changes would address some of the problems I have outlined. Communication should be provided in easy-to-read or plain English. A disability-specific phone support line should be provided to guide people through applications and appeals. Guidance on where to find the information required to complete appeals should be included with all communication. Means-testing should only look at the individual’s income, rather than that of the household. All cliff edge removals of supports should stop, a more staggered approach should be taken with reductions of payments and people should be able to retain the travel pass and medical card.

Mark Wall (Labour)
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I, too, welcome our guests. This follows on from our discussion this morning. A few important items have been raised, including the cost of disability. As has been correctly said, we have been talking about this for 30 years and various reports state different figures. Perhaps if our guests have come across an annual figure for the cost of disability they could share it with the committee as I am aware of three or four different reports. That would be important as we prepare our report and get it out in the future. What is their awareness of and what are they coming across on the cost of disability? We deal with it on a daily basis in our clinics.

However, the big issue for me in this session is the person-focused concept. We also come across this on a daily basis. People who have disabilities talk about their lives, rather than those of the people they live with. I mentioned earlier the few quid people get. That comes home readily when I talk to people about means-testing and what they face.

I have raised the area of appeals here before. It was mentioned again this morning that people are afraid, for want of a better description, to appeal a social welfare decision. Unfortunately, disability allowance is one of the areas I and all members, including the Chair, deal with regularly. We have to go through a huge level of disability allowance appeals. A number of solutions were offered today and I was particularly taken by the suggestion of a phone line being provided. I have come across this as well. If people do not come into my clinic or I do not go to their house, it is difficult for them to get to grips with what is being asked for. We raised it with the Minister before and she stated that the Department is looking at the whole idea of appeals and what is being asked for.

However, for me, the issue is that too many people are afraid of the appeals process. Without the support of the advocacy groups in front of us today or a public representative, too many do not go ahead with an appeal. People have every right to appeal and in many cases win.

I thank our guests for their contributions. Could they try to put some figures on the cost of disability? I have raised continuously at meetings of this committee the growth-versus-net argument, which has been mentioned here today, and the problem with using the gross figures. When people see a gross figure on a payslip or social welfare payment and then look at a bank statement, they see that what they get into their pocket is completely different. Unfortunately, many social welfare payments operate on the basis of a gross figure. I have given the example of the fuel allowance, on which people feel they are losing out given the use of the gross figure. In addition to giving me figures for the cost of disability, could our guests give us examples they have come across where the gross-versus-net issue has caused people to lose out on various social welfare payments?

Mr. Padraig Hannafin:

I will refer to the first question, on the cost of disability. The Indecon report Cost of Disability in Ireland shows the additional cost to manage disability falls between €11,579 and €16,284, or an additional €223 to €313 per week. That is the main statistic circulating at the minute. It is very stark when you note that Ireland ranks 22nd among the 27 EU member states on disability poverty, despite its being one of the wealthier EU states. Those are the figures I have concerning the cost of disability.

Ms Fleachta Phelan:

I have a couple of points on the cost of disability. There are many slightly different ranges, so you will hear slightly different figures depending on which version of the Indecon estimate you get. Mr. Hannafin has given the baseline. There are a couple of important aspects. The figures differ for different kinds of disability. There are many data in the Indecon report that are very useful. This is also something that came up in the Green Paper discussion.

Another important point about the report Cost of Disability in Ireland is that it estimates unaffordable additional costs. This is a point many of us made to Indecon when it was going back and forth on the survey that went out to over 4,000 social protection recipients and informed many of the data. There are things that people just forgo because they do not have the money. It was important to give an estimate in this regard. We sometimes forget that the document also gives an estimate for unaffordable additional costs, and this is in the order of €2,706.

Ms Fleachta Phelan:

Per annum. These are unaffordable extra costs. They are not quantified but indicate things people went without, on top of having to meet the additional cost of disability.

Ms Fleachta Phelan:

It could be the adaptation of a car or a house. I do not know what level of detail is in the report on the specifics. Family Carers Ireland probably cited its own report earlier this morning. The Vincentian Minimum Essential Standard of Living Research Centre has estimated that somebody caring for somebody with a profound disability requires an additional €244 per week to have a minimum essential standard of living.

It is really important to mention inflation when talking about the cost of disability. You will hear references to a guide range of €8,700 to €12,300 but I have started adding consumer price inflation to that because the figures from Cost of Disability in Ireland are already significantly out of date. They are based on data from 2020, at the latest, and much of the data is actually from much earlier. We keep repeating a range that has been completely eroded in recent years. As Mr. Hannafin said, we are almost hitting €15,000 at this stage. There has been a significant cost because of inflation.

It is also important to remember that because the range is so significant, as comes up in the Indecon report, some of our members point to costs hitting €100,000 or more. This would be in the extreme case of somebody dealing with extreme and profound multiple sclerosis or cystic fibrosis, given the level of medical and other costs. It is really significant and not sufficiently factored into provision.

I have two other points, and I suspect Ms Porter will have some information on gross and net figures. The person-focused approach is really important. If we come back to the UNCRPD as our guiding light, we recall that one of the concerns about the reform proposal in the Green Paper was the lack of centring of the UNCRPD given that it is supposed to guide us. Article 27 refers to an adequate standard of living but later there is a reference to the “continuous improvement of living standards”. This is really important as well. It is not just about having an income above the poverty line but about having the opportunity, like everybody else in society, to have your living standards improve continuously. In recent years, we have seen the erosion of the real spending power of the basic social protection benefits. Those are my comments on the person-focused approach.

On appeals, year in and year out in my statement I focus on the 42.7% allowed, but there is also a level of deciding officer changes, so it almost hits 60%. The pattern has been the same for decades. It is alarming to hear of Mr. Hannafin’s experience of something so basic requiring so many appeals. As he said, many people would be put off appealing. There are probably people whose applications are declined and who are not appealing because they do not have the supports and the system is so complex. We really need to address that also.

Ms Sandra Porter:

I would like to address the cost of disability. The Indecon report Cost of Disability in Ireland estimated a cost of €16,284 for people with severe limiting diseases such as Huntington’s disease. There are obvious costs and there are also unseen costs. Due to the lack of access to the transport access scheme since 2013, those families who can afford to pay have a huge outlay. With regard to the cost of accessible housing, an adaptation grant of €30,000 will just not do anything. Since weight loss is associated with Huntington’s disease, the costs of necessary additional food and supplements must be met. Given the position on the adaptation of cars, immobility and the difficulty travelling on public transport, having to rely on taxis entails a cost. We have touched on energy poverty. People living with Huntington’s disease face increased heating costs due to changes in temperature regulation.

To touch on the difference between gross figures and net figures, there are the issues of the lack of access to the fuel allowance and huge energy bills. The unseen costs are the costs of incontinence, laundry and waste disposal by weight. There is also the cost of medication, even with the medical card. A generic version of a product may not be suitable. A huge outlay relates to the cost of multidisciplinary care where it is not automatically available and is impacted upon due to unfilled posts and, in turn, long waiting lists. The families who can will go private. If people could claim back expenses related to physiotherapy, occupational therapy, dietary care, psychiatric care and counselling, it would be very welcome.

The application process is incredibly arduous and difficult. According to the social services annual report for 2022 and the appeals office annual report for 2022, approximately 56% of disability allowance applications were refused on first application, so we first support somebody to make this application only for them to then be refused, and approximately 58% of disability allowance applications were granted in whole, in part or revised on appeal. What about the people who did not actually get to the appeals process section? In my work, we have families who will-----

Éamon Ó Cuív (Galway West, Fianna Fail)
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Will Ms Porter repeat the exact wording concerning those percentages?

Ms Sandra Porter:

A total of 56% of disability allowance applications were refused on first application and approximately 58% of disability allowance applications were granted in whole, in part or revised on appeal.

Éamon Ó Cuív (Galway West, Fianna Fail)
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Does that mean 4% extra?

Éamon Ó Cuív (Galway West, Fianna Fail)
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The wording, as Ms Porter reads it out, is débhríoch or ambiguous. It seems to be saying 54% of applications but it does not say 58% of appeals. That would bring it to 75% whereas if it is 58%, it has only gone up 4%. It is 8% of appeals, if they were all appealed, but it is only 4% extra in total.

Ms Sandra Porter:

To move on to the issue of gross versus net, there is the fact that rent, mortgage and other existing obligations like a car loan are not taken into account due to this, in addition to the lack of access to fuel allowance.

Erin McGreehan (Fianna Fail)
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I welcome the witnesses. Following on from our last session, we see the harshness that means testing delivers for many families. As I said, it does not take into account the cost of a mortgage, the extra cost of heating a home or the extra cost of having a disability and having to care. It seems that, quite often, the Department of Social Protection appears to have no sense of how it keeps the disabled community within a poverty trap. You are damned if you do and damned if you do not. If someone is on disability allowance, they get a medical card and free travel and have a standard of living, and while I am not saying it is an adequate standard, it is a standard. However, if someone goes into education or is living independently, they do not get rent allowance and cannot live independently as they go through education because that is taken from them. The Department gives with one hand and takes with the other, and it keeps an individual at a level. As noted in the opening statement, the lack of financial independence means reliance on a partner or spouse and people are penalised. Mr. Hannafin also highlighted this in his contribution.

I have a question for the Disability Federation of Ireland on the UNCRPD. Could the Department be considered to be in breach of Article 28 on the adequate standard of living? It is its responsibility to maintain an adequate standard of living. We have signed up to the convention and we are not adhering to it. We do not have individualisation, and while I know the individualisation of a payment would be difficult, difficult things can be surmounted. People have to submit evidence of other people’s income in the house but if they are living at home as a single person, they are entitled to the full rate. They are not penalised based on their parents’ income and can receive a payment from the Department of Social Protection on an individual basis while living with family members.

Again, this goes back to how the independence of people's income is compromised again and again. If someone gets a job, the medical card or free travel is taken off them. As we say repeatedly, given the cost of disability and the cost and risk of trying to improve living standards through employment, that benefit does not balance out when people lose their medical card and other supports. Given this means testing, will the Disability Federation of Ireland confirm there is reticence among the disabled community to commence employment due to the impact on medical card entitlement, household benefits package entitlement and free travel entitlement? The current income limits are quite restrictive and we are constantly told this adds hugely to anxiety.

There are disabled people who want to better themselves and, like many others, want to enter education to improve their chances of employment, but they would lose their rent allowance. What engagement has the Disability Federation of Ireland had with the Department in that regard? It is a cruel slap in the face. People are doing their best to get on in life yet they could end up not being able to afford a home.

Ms Fleachta Phelan:

I completely agree with all of the concerns the Senator has raised. At a fundamental level, there are two things we need to do. One is we need to support disabled people who can work and want to work and make sure it is beneficial for them and, as the Senator said, that it does make them more vulnerable because of the things they have to forgo. One of the big problems with the Green Paper was that it did not acknowledge all of the structural barriers to employment and it was silent on that. That, along with the focus on the requirement to engage that was originally there, set off a lot of alarm bells based on the experience that disabled people have and the systems they have seen in other parts of the world very near to us.

We need to address the structural barriers to support people who can work. We know we have one of the lowest employment rates comparatively at EU level and we are about 20% below that level. It is clear, when we look at the EU level, that many other countries do not cut off benefits and supports that are disability-specific so quickly, based on income and what people earn. Our colleagues in the European Disability Forum, of which we are the Irish member, are often scratching their heads at the fact we are such a wealthy country yet we come bottom of the league tables both on poverty and unemployment. That is part of the reason. Even not very radical organisations like the OECD are saying we need to decouple medical card entitlement. In fact, the OECD called for a universal healthcare system, but it says that we at least need to provide people with medical cards, transport access and a free travel pass.

We know there have been improvements in the system in recent years and people can hold a medical card for a period, but what happens after five years? I know somebody who had that exact cliff edge, having worked for five years and then lost their travel pass, and I know the financial implications it had. If we do not provide those cost-of-disability supports, the risks are too high and we also see that in-work poverty is higher for disabled people because all of those extra costs are not factored in.

There are examples even in the UK system, where a level of supports are provided in accessing work and as part of the personal independence payment. We are inclined not to appreciate bits of the system across the water. There are many problems with it, but there are aspects that really do factor in the cost of disability and provide support. That is one part.

The second part is that we need to provide an adequate income for people who cannot work. This needs to be much higher than what we provide at the moment. As we heard this morning, the flip side is that, if we address the issue of services and supports, some of those costs will come down significantly.

I want to pick up on the adaptation grant piece. I know the committee has discussed the housing adaptation grant previously but it has been almost two years since DFI made a submission to that review. As the committee will know, the maximum grant a person can receive is €30,000. At the time, we recommended that this needed to increase to €60,000 at the minimum but that was two years ago so the cost has probably increased again. We do not know what is happening with that. It is really important to follow up on that. We need to provide an adequate income. I attended the National Economic Dialogue on behalf of DFI on Monday. We participated in a number of workshops. I was at a very vibrant and engaged workshop with the Minister and many of us present raised these concerns. There is a line that work is the best route out of poverty. I am always very concerned about that because there are many people living in this country who will never be able to work so we need to make sure that we provide them with supports.

The Senator spoke about financial independence and the right to independent living. Article 19 of the UNCRPD is extremely important in that regard. She also asked whether the Department might be in breach. I am not an expert on the UNCRPD so I could not comment on that point in particular but I will say that, year in and year out, the poverty statistics show how much we are failing people. There are also significant poverty reduction targets for people with disabilities in the roadmap for social inclusion. These are fairly moderate and I question the idea that our aspiration is lower for our disabled community and that we will accept a higher rate of poverty for them than for other citizens and people living in the country. During the period we have been tracking this under the roadmap, the poverty rates have been increasing rather than decreasing. The committee on the International Covenant on Economic, Social and Cultural Rights also raised this with the delegation from Ireland earlier this year. That is probably a good bit from me.

Mr. Padraig Hannafin:

May I just come in there as well? The Senator mentioned the reticence of people to enter employment. We in the rehab area are holding focus groups with our service users in preparation for a pre-budget submission and one of the questions we asked them was what is their biggest barrier to entering employment. Our service users believe that the greatest barrier to them entering employment is fear and anxiety about losing supports such as the medical card and travel pass and the fear that they would eventually end up paying to work rather than being paid to work when the losses they would incur as a result of losing supports are taken into account.

Ms Sandra Porter:

I would just like to add some detail on working and living with a neurodegenerative disease. We submitted some recommendations to the Green Paper. One was to highlight the structural barriers and lack of in-house supports for people living with a neurodegenerative disease. The majority of people living with Huntington's disease will leave work with undiagnosed symptoms. If there were in-house supports, a person with a neurodegenerative disease would ideally reduce their hours and stay in work for as long as is possible. There should be a support on the model of the working family payment where the reduction in hours would not result in a cliff edge as regards income. The person would go from full to partial financial independence before becoming dependent on support payments. This would help psychologically and with family life.

Éamon Ó Cuív (Galway West, Fianna Fail)
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One of the issues raised in some of the proposals is individualisation. My view on that is that it would be hard to individualise one mean-tested payment and not them all because that would lead to migration. However, there is a simple solution for many people who worked, albeit not for all. We have discussed it in the committee. I am talking about bringing the conditions for getting invalidity pension in line with those for the disability allowance. At the moment, the invalidity pension payment is basically an individualised payment. No matter what your partner, spouse, cohabitant or whatever else earns, you get the personal rate. If you apply for disability allowance, you have to be unfit for the work for which you are trained but, to get the invalidity pension, you have to be unfit for any type of work. It is a funny kind of distinction. If that test was applied to somebody who had a primary education and who had worked as an unskilled labourer all their life, would it mean that they should be able to go into a university and start giving lectures? They might be able to give better lectures than those currently there but that is another day's work. I do not think they would get past to do so. That is something the committee has proposed, and I would be interested in the witnesses' responses in respect of it. It would not solve all problems but it would solve some of them.

The second issue is how a partner's means are assessed. At present, it is based on a €60 disregard and 60% of the balance. It would help some people if that was ameliorated. We were discussing that earlier on. Again, we do not have to go there in one step.

There is an issue the witnesses did mention. I wonder if they have come across it. I keep coming across it. The Department of Social Protection hates self-employed people. It absolutely detests them. If I have employee income, I get a disregard and then it is 50% of the balance. If I have self-employed income, it is 100% - tough off. If I have an income of €200, I am hit much harder if I am self-employed. These are small suggestions that could be taken without totally reforming the whole system but one of the things we suggested was that this anomaly should be got rid of. I would be interested in the witnesses' view on that.

We are not really here to discuss the medical card because, as is always stated, that falls outside the remit of the committee.

Éamon Ó Cuív (Galway West, Fianna Fail)
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However, I think we would all agree that it is a major barrier. I would have much preferred it if the income limits for the medical card rather than those for the GP card had gone up. If you have a fixed sum of money, you have to make choices in this arrangement. The medical card guidelines are absolutely ridiculous.

I am interested in a wider issue. Other than medical assessment for ability to work, much of the social welfare code is based on money because it is easy to measure. It has an attractiveness because it is easy to measure. With partial capacity, we tried to medicalise people's ability to work. I am not sure it was that successful.

If there are large numbers going for it, there will be a large number of appeals or whatever because it is a subjective judgment.

This leads to my next question around the costs of disability. The witness focused on this issue big time and it is one to which I have not found an administrative solution in my own head. All of us, as public representatives, deal with people with disabilities of all levels, from people with profound disabilities who cannot walk or talk or are incontinent and so forth to paraplegics, people in wheelchairs and people who, on the surface, walk into my office and receive a disability payment, but physically, are not any different from the rest of the disability issues. There is a huge difference in the cost of disability between the various groups.

I have not found a solution to this in my own head and I am anxious to find a one. Ms Phelan talked quite eloquently about intrusion into people's lives. How can this assessment of the cost of disability be done in a graded fashion - if it is going to be done - without being very intrusive and leading to an endless appeals system? Looking again at appeals on disability allowance, I bet they were not about money. I bet that most of them were about the ability to work or not to work. Those are simple black and white cases. Maybe they are not simple, but relatively simple. In the context of trying to assess the cost of disability, have there been any solutions put forward as to how this would be measured in a way that would not be hugely long and drawn out with cost delays and without being intrusive into people's lives? I am totally in favour of the concept. I am 100% in favour of the concept but the challenge is to convert that concept into an operable scheme in a Government Department across a whole State. I wonder can the witnesses guide us in that regard.

Ms Fleachta Phelan:

Those are very easy and straightforward questions from Deputy Ó Cuív. It will not be difficult to answer those at all. I thank him. There were some positive elements of the Green Paper and there were some aspects of it which, possibly, got dumped into the broader discussion. Deputy Ó Cuív described the difference between, for example, the invalidity pension, disability allowance and the partial capacity benefit and whether people should move across to partial capacity benefit. There are questions around whether a person is taxable in that regard. We know the blind pension is taxable, etc.

In the context of the consistent method, the system is extraordinarily complicated to understand for everyone, including for those of us who work in it day in, day out. Potentially, the proposal of making a more systemic and consistent system for people without the anomalies was a positive one. To what extent it would fully address all of the anomalies, I do not know. There are a lot of issues around the invalidity pension and I know Ms Porter has a couple of points to make in that regard as well.

As to the point that the Department of Social Protection hates self-employed people, we have a fairly elaborate submission on the Green Paper which highlights a lot of the issues. The issue of self-employment is a really important one because, sometimes, it offers more flexibility as a way of generating income for people who have fluctuating conditions or for people who may have more flexible working hours as a result. We just seem to assume that disabled people will not be entrepreneurs or be self-employed. As Deputy Ó Cuív may have heard, this issue also comes up in a set of other contexts. For example, grants from the Arts Council received by disabled artists are counted and considered means. They are therefore, financially, in a difficult situation. This issue has come up around the universal basic income for the arts. There have been issues with PhD stipends and this continues to be an issue. Our member organisation, AHEAD, brought up with me the fact that, sometimes, PhD students are treated as employees by the university they are in and that there is a €20,000 cut-off of the disregard which was brought in.

The medical card issue was discussed earlier. When the caring organisations were speaking to good practice, they were pointing to countries which have much better healthcare provision and that makes a huge difference.

On the cost of disability itself, I was searching for good examples to which I could point in our submission, but I found it really difficult to find any good international examples. There are certainly better provisions and that is why we have focused on some aspects which we think addressing can start to do that. The speaker from the OECD, who spoke at the Green Paper event in Dublin, was very clear in his communication that a costed disability payment is needed as it is the fairest and best way to address things. Part of the reason that the continuous ask has been a flat rate of payment so far is for the very reason Deputy Ó Cuív is bringing up, that is, it is very difficult to do the individual assessments. I do not think it is impossible. There is a lot of international guidance on how the assessments should be done. Part of the negative reaction to the proposal was the extent to which a medical model seemed to be very much inherent in the Green Paper approach. In areas where we are doing assessments, people should be able to speak about their own needs and the structural barriers that are impeding them from working or participating. There are guidelines from the International Labour Organization, ILO, on assessments and there are also recommendations from the UNCRPD committee itself. It would be possible. There is also a substantial amount of data in the Indecon report itself which we do not tend to look at. Ms Porter has the specific figures for Huntington's disease. There are broken-down pieces of information on the specific kinds of disabilities and the relative impacts of those. We do not have to go completely back to the drawing board but it has to be done in a fair, inclusive and participatory manner and be based on the principles on independent living and vindicating people's right to an adequate standard of living.

I wish to refer back to the piece on employment. It makes no financial sense, from the State's point of view, at a time when we keep saying we are at full employment, to be preventing a substantial cohort of people from working, many of whom wish to work but are prevented because of those structural barriers such as the lack of services or the risks which we have been discussing. If we were to support and enable those people to go to work, more money would come back to the State by way of income tax. If we were to provide some of those services and not means-test them to the extent we are, it would not be substantial and the money and revenue people earn would come back into the community. It just does not make any logical sense, even from a purely financial point of view, to put those limits in. I am sure I have not tackled everything. Ms Porter may have a few points.

Ms Sandra Porter:

I welcome a solution about the alignment around the invalidity pension and the disability allowance, as Deputy Ó Cuív mentioned. In my work supporting individuals and families living with Huntington's disease, the criteria for the invalidity pension means that people have to be not working for one year or have a diagnosis. People living with Huntington's disease may have worked for many years and by the time they may decide, or have accepted their condition, many years may have passed. They are unaware that they are entitled to an invalidity pension. It is possible to make a late claim.

We know of a number of families who have a late claim application in, but we do not have an outcome on any of those claims yet.

On the self-employed, for example, someone living with Huntington's disease who is self-employed will possibly not access disability allowance because his or her spouse or partner is working full time. Such an individual is not eligible for any other payment and has to wait a year to look for the invalidity pension. There is a language around invalidity pension. People on disability allowance can work; it is not the end. Invalidity pension sounds like the end of someone's working life. People can go to partial capacity benefit but it is very hard to accept. Although families need that support, the individual has to accept it. We definitely welcome aligning invalidity allowance with disability allowance as regards how to access it.

A self-employed person caring for a spouse or partner is assessed on the previous tax year. A lot can happen in a year. That person might be working less in the current year and if somebody is working less, he or she is earning less. As regards means-testing, in order to keep up to date with a self-employed person's working hours, a periodic review of the means test is needed. That is not happening. It is also administrative.

Éamon Ó Cuív (Galway West, Fianna Fail)
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Can claimants not seek, at any time, a periodic review? If their circumstances change, they can.

Ms Sandra Porter:

Yes, but again it is the process and how difficult that-----

Éamon Ó Cuív (Galway West, Fianna Fail)
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Yes, but just as a matter of record they can.

Mr. Padraig Hannafin:

The experience I have is the service user would not be in self-employment. I am not familiar with what the best approach would be in that regard. However, I accept an Teachta's suggestion that the individualisation between invalidity payments and disability payments would be a good start.

Ms Fleachta Phelan:

I will make a couple of final points. The Cathaoirleach mentioned education and training. One of our members, AHEAD, pointed out to us the disadvantage that disabled students can sometimes experience around access to travel for international study and residency requirements around disability allowance. They get knocked off disability allowance if they move somewhere to do a semester abroad. There are many experiences around that. It is not specifically about means-testing but it is relevant.

Part of the reason the standard ask for so long has been the level of disability payment is that at present we have a disability allowance that is the same amount as jobseeker's allowance. We provide the same amount, even though we know and have the evidence base to show all the extra costs that are there. The fairest thing, until we can build the better system that Deputy Ó Cuív is helping us tease through, is to start to acknowledge that through a flat rate.

I will also mention the disability support grant. One of the things that has been built in over the past couple of years as part of the cost-of-living measures is the disability support grant. In the first year it came in, there was an acknowledgement in the Minister for Finance's speech of the extra costs of disability. The grant is nowhere near adequate but it is a good idea and it is a start. We have called for it to be continued but we saw a reduction in it last year, which made no evidential sense. It was reduced from €500 to €400, even though, as we indicated, the costs of disability have gone up.

The final piece, and the committee knows this, is there a very strong public and political mandate to address this issue. The Citizens' Assembly on Gender Equality made very strong recommendations around how we should move to a system that delivers an adequate standard of living for all, and that people are willing to pay extra taxes, if needed, to fund it. The committee and numerous other Oireachtas committees have all endorsed this. It would be great to see more progress because it is clear that what people want is a better system that delivers dignified living for everybody, including those who are disabled or who are caring.