Léim ar aghaidh chuig an bpríomhábhar

Joint Committee on Social Protection, Community and Rural Development and the Islands díospóireacht -
Wednesday, 18 May 2022

Policy Issues for Carers: Family Carers Ireland

Before I commence, I remind members participating remotely they must do so from within the precincts of Leinster House. I ask members and witnesses to turn off their mobile phones as these interfere with the broadcasting equipment and that members participating remotely please use the raised-hand icon on Teams if they wish to contribute.

This morning's meeting has been convened to discuss the State's national carers policy and the means assessment criteria administered by the Department of Social Protection. Ireland has over 500,000 family carers, or one in three households. They provide an essential service by allowing older people and people with a disability to live in their own home and in their own community.

The carer's allowance was first introduced in 1990 and has been a valuable support to family carers throughout the country. While the pandemic has been incredibly difficult for family carers, it has shown us how vital their care is in order to protect our most vulnerable citizens. The pandemic has also demonstrated the speed at which our social protection system can be transformed and adapted. The members of this committee and Members throughout the Oireachtas, in Government and outside it, supporting the Government and those in the Opposition, are all of the opinion we must work towards a financial support system for family carers that is designed around the care given and not dependent on the bank account of the spouse of the full-time carer. This committee has already received evidence of a carer with three profoundly disabled children who is ineligible for the carer's allowance. This clearly indicates to me the current eligibility test for the payment is little more than a means test that denies people financial assistance to support them in providing such vital services in our society. At present there are 116,000 full-time carers in Ireland but only 80,000 are able to access the carer's allowance as the current means test assesses all income coming into the household and not just that of the family carer. Of that 89,000, almost half do not get the full amount because of other household income. It is important we recognise the carer's allowance was not designed solely as an income support but to also recognise the importance of supporting as many older people and people with a disability as possible to remain in their own homes. This benefit was even more pronounced as a result of Covid-19. We must ensure the vital role that has been played during the pandemic is reflected in a proper support structure to protect our most vulnerable citizens.

Today we will hear direct evidence for the very first time from three family carers. Some of them will be addressing the committee from their own homes because up to now their roles as family carers did not facilitate them giving direct evidence. The committee is reviewing the current means assessment system to ensure carer's allowance supports all those who make such a vital contribution to society by performing the work of acting as family carers. We look forward to discussing the potential changes to the carer's allowance and changes to the means assessment system amid rising costs and inflation. We especially welcome the opportunity to hear directly from three family carers. They are Ms Anna Budayova, Ms Niamh Ryan and Mr. Damien Douglas. I thank members of the committee for raising these important issues as a priority item in our 2022 work programme. A briefing from the Department to the committee secretariat was issued to members and I particularly thank the committee's policy adviser, Ms Haley O'Shea, for her work on this. As we continue in this regard I welcome our witnesses from Family Carers Ireland to the meeting. In addition to Ms Budayova, Ms Ryan and Mr. Douglas we have Ms Catherine Cox, head of communications and policy, Mr. John Dunne, CEO and Ms Clare Duffy, policy and public affairs officer. All are very welcome.

Before we commence I must give a note on privilege. Witnesses are reminded of the long-standing parliamentary practice that they should not criticise or make charges against any person or entity by name or any other way to make him, her or it identifiable or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. Therefore, if witnesses’ statements are potentially defamatory in relation to an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative they comply with this direction.

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

I call on Mr. Dunne to make his opening statement on behalf of Family Carers Ireland.

Mr. John Dunne

I thank the Deputies and Senators for the opportunity to speak to them about our suggestions for a radical review of policy on income protection for family carers, in particular the carer’s allowance. Carer’s allowance was first introduced in 1990 and it has benefited from periodic improvements since then. We believe, however, that the fundamentals of the scheme, which have remained unchanged for 32 years, now fall well short of current best practice.

The State recently launched a pilot basic income scheme specific to the arts sector. This will provide a basic income of €325 per week for people over three years. By way of comparison, had the State decided to introduce an artist's allowance modelled on the carer's allowance, artists would be eligible to receive a means-tested maximum of €224 per week, with a requirement that they demonstrate they are working full-time at their artistic endeavours and a prohibition on them spending more than 18.5 hours on income-generating activities. The pilot scheme was presented to enable artists "to focus on artistic production/practice without having to enter into employment in other sectors to sustain themselves". This is quite similar to the intent of the carer's allowance scheme, which is to allow carers to focus on their caring, without having to enter into employment in order to sustain themselves. The different income levels that are set suggest that artists have higher levels of sustenance needs than family carers. The other point to note is that the scheme was introduced as a way of recognising "the value of time spent on creative practice" by artists. I wish to be clear that in no way are we begrudging artists the benefit of what is an innovative and enlightened approach to income support, but we invite a reappraisal of how we as a State recognise "the value of time spent" on family caring, to use that phrase from the artist's scheme.

The State has reached a critical juncture in its treatment of family carers. Even before Covid, it had been agreed that a broader discussion was needed on the role of family caring, including the rights and needs of family carers and the financial supports available. The report of the citizen’s assembly is resolute in this regard expressing a high level of ambition for change. It recommends the reform of carer’s allowance including: changes to the means test and individualisation; increasing the hours that carers can work or study; reimbursing the costs associated with care; increasing the carer's support grant; and providing a dedicated pension solution for carers. Of particular significance is the assembly’s recommendation to replace Article 41.2 of the Constitution to recognise the care provided by both men and women, while obliging the State to take reasonable measures to support carers.

I shall now address what it is that needs to change. The classification of the carer's allowance as a social assistance payment, and therefore comparable with jobseeker's allowance and supplementary welfare allowance, is problematic. The classification does not recognise the uniqueness of family carers within the social welfare system, and it is hampering efforts to make carer’s allowance more accessible to full-time carers who we believe should qualify. Consistent references to the carer’s allowance means test as being the most generous in the social welfare system, while correct, presuppose that it should be benchmarked against income supports for people of working age, which is not the correct categorisation or comparison.

We acknowledge and welcome the increase in the income and capital disregards for carer’s allowance announced in last year’s budget but the implementation of these increases has been problematic for a number of reasons. Mr. Douglas, Ms Budayova and Ms Ryan will explain these reasons in their personal statements shortly.

Family Carers Ireland believes that the carer’s allowance scheme is archaic, gender-biased, overly restrictive, and no longer fit for purpose. When the carer's allowance was introduced in 1990, it was conceived as an income support for people living with and caring for a relevant pensioner. It was not designed to meet the very different life circumstances and needs of lifetime carers who care for prolonged and lengthy periods and who need access to an integrated income support system that encourages rather than restricts their participation in work and education. Restricting the hours a carer can work or study is paternalistic and at odds with the Department's mission to promote active participation and inclusion. Imposing the 18.5-hour ceiling traps carers, forcing them to remain dependent on social welfare and unable to prepare for life after care. This is particularly anomalous with regard to education. The inclusion of travel to and from college, as well as course work and class contact hours even where they are performed by distance learning, means the vast majority of education courses exceed the 18.5-hour ceiling. Even more bizarrely, a family carer can spend more than 18.5 hours reading non-educational books or writing fiction but if her or she spends that time reading and writing course work it would affect his or her eligibility under the scheme.

Income support for family carers also reinforces the already entrenched gender stereotype of women as the primary caregiver. It does this in several ways. The absence of a pay-related benefit discourages the higher paid partner from leaving work to care. This is usually the male partner. Means testing carer’s allowance based on the household income rather than on the individual income of the family carer reinforces the male breadwinner model and forces carers, the majority women, to be financially reliant on their partner. As a result, the vast majority of recipients under the three care-related social protection schemes are women, ranging from 77% of claimants receiving carer's allowance to 83% of those on carer's benefit. While other payments such as jobseeker’s allowance, disability allowance and the foster carer’s allowance are exempt from tax, the taxation of carer’s allowance seems a fairly arbitrary penalty imposed on family carers.

Now is the time to reassess the value we place on unpaid care and to review how carers are recognised and supported financially by the State. We believe this review should lead to fundamental changes in carer’s allowance including: the reclassification of the scheme; the abolition of the means test; or the establishment of a participation income for carers, as recommended by the National Economic and Social Council in 2020. We believe that the requirement to satisfy strict medical eligibility criteria and the requirement that applicants provide full-time care should be sufficient to protect the carer’s allowance scheme from potential abuse.

We acknowledge that a fundamental review of income support for family carers would be a substantial and technical exercise that would require careful consideration and reflection. Our first call today is that such a process be initiated and a reasonable timeframe set for its completion. Our second call, having regard to the fact that we must continue to live with the current carer's allowance system for a few more years, is for a significant increase in the levels of carer's benefit and carer's allowance in this year’s budget.

Research by the Vincentian Partnership for Social Justice published in April shows that even before the cost of living crisis, income supports for family carers caring for a child with a profound intellectual disability were inadequate in supporting low-income households to meet the minimum essential standard of living. These households, which are representative of many caring situations, incur additional weekly costs of €244 per week compared to a similarly composed household with no disability or care needs. The research also shows that the disadvantage experienced by caring households does not end as income increases. Even caring households with higher income levels have significantly less disposable income to meet the need for contingencies such as car or house repairs, medical expenses, or unexpected bills. These families, who often rely on a single income due to their caring responsibilities, face a financial battle as they are ineligible for almost all carer supports, yet face the same crippling costs of caring without recognition or support from the State. It is untenable to think that families earning a gross household income of more than €65,000 are considered sufficiently well-off to meet these additional costs themselves, regardless of their mortgage repayments, loans, children's education expenses, and other outgoings.

The gross inadequacy of carer's allowance when compared with the Government’s own benchmark for artist sustainability is insulting and unjust. The maximum rate of carer's allowance of €224, which is just €3.50 more per week than it was in 2009, represents a loss of €25 per week in purchasing power when inflation is taken into account.

The introduction of a basic income for artists of €325 and the establishment of the pandemic unemployment payment, PUP, at €350 highlight the inadequacy of carer's allowance to provide a basic standard of living, even before the additional costs of caring are considered. The foster carer's allowance is not means-tested and is rightly set at a rate of €325 for the care of children under 12 and €352 for older children, with the payment exempted from social welfare means testing and tax-free. Furthermore, if the foster carer is caring for a child with additional needs - we must bear in mind that every family carer is doing so - the payment can increase to €549 or €576 per week, depending on the age of the child, whereas a parent forced to give up work to care for their own child with additional needs receives up to €352 less per week.

The Assisted Decision-Making (Capacity) Act, due to be commenced next month, is dependent on family carers assuming the role of a decision supporter in many cases. While professionals appointed by the decision support service to act as a decision-making representative, will be paid for their time, family carers acting in this same role will not. The argument is that many family members undertake unpaid roles such as executor of an estate and the State does not want to undermine such volunteerism. However, family carers receiving only €224 per week for a full working week are surely entitled to question why they should be expected to carry this extra burden in terms of time and responsibility with no financial acknowledgement. An appropriate increase in carer's benefit and allowance would avoid any such risk to volunteering within the wider population.

Despite the additional and often unavoidable costs faced by family carers, the Government's package of cost-saving supports did little to mitigate the cost-of-living increases for carers. Indeed, despite the fuel poverty many carers face, they are not eligible for the fuel allowance scheme. For all of these reasons, the Government must urgently address the inadequacy and unfairness of carer supports by increasing the rate of carer's allowance and benefit to €325 per week in budget 2023. I thank members for their time and attention this morning. My colleagues and I will be happy to answer their questions in due course.

I thank Mr. Dunne for a very comprehensive opening statement. We will now hear from three family carers at the coalface. I invite Mr. Damien Douglas to make his opening statement.

Mr. Damien Douglas

I am 65 years old and a carer. My wife Mary is also a carer but I will not tell the committee her age. We have five wonderful children. Una and Ailis are our youngest daughters. They are 27. They are twins and have a condition called Wolf-Hirschhorn syndrome. Because of this, they cannot eat, drink, talk or walk. They have severe developmental delay, epilepsy and are doubly incontinent. They are non-mobile and use wheelchairs which we have to push. That is grand. They are PEG-fed. They function at the level of a nine-month old baby although they are 27 years of age. We love them to bits.

In 2003, Mary gave up work to mind the twins and our other children full time. Beaumont Hospital lost a brilliant accident and emergency nurse. Mary gave up a career she loved and forfeited a salary and future pension entitlements. In 2013, I had to retire early from my job as an assistant director of mental health nursing because the girls were now at the magic age of 18. I loved my job, but I love my girls more. Being 18 meant the end of school for them. However, no adult day services were available. I retired early to look after the girls and fight for day services. Eventually, we were successful.

Carer's allowance is a means-tested social welfare allowance that is paid weekly to people who provide at least 35 hours care to a person who needs support because of age, disability or illness. Many carers in our situation provide far in excess of 35 hours per week. Often, as in our case, it is nearer to 24-hour daily care. For those who are not wealthy, the carer's allowance is essential to help them manage financially. The new scheme coming into effect in June gives a disregard for savings and investments of €50,000. I thank the Government for that. It is very important. The means test cut-off will be €750 per week per week, allowing an income of €39,000 per annum. For a couple, this works out at €9.38 per person over a 40-hour week. This is far below the minimum wage of €10.50 per hour, which equates to €42,000 if both partners had full-time minimum wage jobs.

In recent times, people who lost their jobs or were unable to work because of Covid were able to claim the PUP. At one stage, this was valued at €350 per week. This would be a fair sum to have the carer's allowance pitched at. Currently, the maximum carer's allowance payment to a carer under 66 looking after one person is €224 per week. If over 66, he or she would get the magnificent sum of €262 per week. That is if the carer is looking after one person. Carer's allowance is definitely a social welfare payment. It is not a payment for work done. It does not compensate for loss of earnings or pension entitlements.

Some carers may have a weekly work pension or work part time. All earnings, income, investments and savings are taken into account in the means test. No allowance is made for the purpose for which the savings are intended. We do not all go on exotic holidays. If people happen to have money that puts them over the means test limit, it does not mean they are rich. It might mean they have more than they need for today but the money is necessary for future needs. It might be for replacement vehicles, wheelchair vans, house repairs or improvements, respite breaks or extra carers to help, especially when it is so difficult to engage in essential therapies due to the difficulty in getting assessments for physiotherapy, occupational therapy and speech and language therapy, all of which are essential.

We know there are about 500,000 carers in Ireland. Not all of them are full-time carers. In 2021, 115,000 carers received the carer's support grant. Only 91,000 received carer's allowance in some form or other. We know that approximately 6,000 full-time carers who receive the carer's support grant did not qualify for the carer's allowance based on the means test, which means the annual grant is the only recognition they receive from the State. These carers continue caring and looking after their loved ones. In many or most cases, if they stop caring for their loved ones, there is no one else to step in to do it. The State is not able to do it, yet the State is saved billions every year by the dedication and love of carers like us. All we ask is to be treated fairly and with dignity and respect. We do not want to face a future of poverty and frugality. Our futures are bleak enough as it is, getting older and frailer and still minding our adult children when we are getting to a stage when we ourselves are beginning to need help. I thank members for their time and consideration in listening to us.

I thank Mr. Douglas very much. We will now hear from Ms Niamh Ryan, a family carer.

Ms Niamh Ryan

I thank members for the invitation to appear before the committee. I am mother to twin boys who will be 14 years old in June. My husband is a mid-grade public sector employee. I am also a full-time carer for our son Liam, who has a life-limiting condition. He has severe spastic quadriplegic cerebral palsy. He is a wheelchair user, is tube fed and has epilepsy, global developmental delay, scoliosis, hip dysplasia, cortical visual impairment and chronic lung conditions.

He is on 28 doses of 18 different medications and four nebulisers every day. This is when he is well. It is a whole different story when he is sick. Liam requires full assistance for all of his needs and personal care.

I have never received full carer's allowance because my husband works but we managed. However, in March my carer's allowance was slashed by €90 per week. With inflation rising as it is, this could not have happened at a worse time. When I brought up the fact the carer’s allowance I get equates to 78 cent per hour, I was told that I should not look at it as remuneration. I find this very insulting because being a carer is a job and is a very stressful job at that. I work 24 hours a day, seven days a week with no days off and no holidays. When family carers are told that what we do is worth so little, it really makes us feel quite worthless. I do not have the luxury of dwelling on my feelings because the cold hard fact is the current system of means-testing carer's allowance is extremely unfair and puts families under extreme pressure financially.

If there has to be a means test it should at least be fair. It is not right that income is the only thing considered and that outgoings are not taken into account. The only outgoing that is considered is an allowance of €15 per week for travel, and we all know how far that gets us these days. It does not matter that, like many other families, we have a huge mortgage. We had two salaries when we bought our house but I had no option but to give up my job to look after Liam. It does not matter that we had to take out a big loan to adapt our house to cater for Liam's needs. We did receive the house adaptation grant but it did not come close to covering the cost of the build. It does not matter that we had to take out another big loan to purchase a wheelchair accessible van to be able to take Liam to all of his hospital appointments and to make sure he is not a prisoner in his own home. It does not matter that while energy costs are at an all-time high and still rising, Liam’s medical equipment has to be left on and charging 24 hours a day. This equipment includes an oxygen concentrator, suction machines, a BiPAP machine, an oxygen saturation monitor, an air purifier, a hospital bed, an air mattress, a ceiling hoist, a nebuliser machine and feeding pumps.

It does not matter that our heating has to be on more than most as Liam misses a lot of school through illness. Indeed, he only returned to school three weeks ago after cocooning at home since the start of the pandemic and he has already missed a few days due to a chest infection. It does not matter that our light and heat are on more than most when we have nursing support at night. It does not matter that Liam's clothes are more expensive because they have to be adapted for his feeding tube and wheelchair. It does not matter that we had to purchase expensive medical equipment, including a ceiling tracking hoist and changing bench, as these were considered luxuries by the HSE. Not only did we have to find the thousands of euro to purchase this equipment but we now have to bear the costs of servicing and maintaining them. It does not matter that we have extra waste disposal charges due to all of the medical waste and incontinence wear. It does not matter that we have to pay charges for having prescription drug sheets written up every six months so that we can avail of our home nursing package. None of these things matter to the means test but they matter greatly to us as we struggle to pay for them.

At the end of the day, I have no choice but to be a full-time carer for Liam, so working part-time outside the home is just not an option for me and many other family carers. As for the disregard for savings of €50,000, that is just simply the stuff of fairy tales to us. Despite this and how difficult, stressful and exhausting it is, I am happy to look after our beautiful happy boy and I dread the day when I will not have to do it anymore. My family and many like us need help and support now. We do not need to be told, as we so often are, that family carers are valued by our Government. I certainly do not feel valued. There are substantial additional costs involved in caring for a person with complex medical needs and I ask the committee to look at these seriously and consider making meaningful changes to the means test so that a family's considerable additional outgoings are taken into account. This would truly help families who spend so much of their time worrying about the health and survival of their loved one and could really do without these extra financial worries and pressures. I thank the committee.

I thank Ms Ryan for her evidence, which is extremely powerful. Ms Budayova is in the west. The sun was shining there bright and early this morning. I hope it is still the case and that we do not have the rain on the way up to Dublin.

Ms Anna Budayova

I thank the committee for having me appear before it. It is beautiful here in Tuam. We do not get much sun so it is a fantastic day today. I am a mother of five beautiful children. My baby Esther was born with Trisomy 21 and an atrioventricular septal defect, which is a serious heart condition. Only last week she was diagnosed with deteriorating eyesight. This means she will need to wear glasses from now on. Unfortunately she also has other medical complications. I ask the committee to end the means test for carer's allowance and change the laws for parents such as me, especially when a child is born with a lifelong disability. There are huge gaps in the system. Article 41.2.2° of the Constitution states, "The State shall, therefore, endeavour to ensure that mothers shall not be obliged by economic necessity to engage in labour to the neglect of their duties in the home."

We came to Ireland in December 2007 when my husband's job moved him from another EU country to work here on a project. We have been working here since then. We never claimed social payments or benefits here. When things got harder in Dublin with rising costs, we moved around the country several times to get better jobs and more stability for our family. Knowing our family was growing, we have not been reckless with money and saved as much as possible for a house deposit. We changed jobs and schools for our children and left friends behind. It took us more than ten years to save money for a deposit to be able to buy in rural Ireland, which is where we moved in 2017. My husband had to commute to work daily.

We have worked hard to provide for our family over the years. To get these salaries we studied and paid for education several times. We have never abused the system and we are now being punished for this. A Down's syndrome diagnosis accompanied by additional health conditions requires more appointments, more diesel, more travel, more tools, more parking, more babysitting, more private therapies, more glasses, more money and no break. The costs associated with this care are continuously rising. If people have more children, as we do, it means additional childminding costs when we are away. Even basic day-to-day expenses, such as food, heating and bills, are very high and will rise in future. It is only May and I am already worried about how we will cover September, secondary school and the boys in primary school. Our financial situation is causing tremendous stress for the family and pressure on our marriage. Only yesterday we had to travel to the hospital in Crumlin for an early cardiology appointment. This meant leaving our other four children with a childminder at 5.15 a.m. to be in Dublin by 8.15 a.m. for the appointment.

When my daughter Esther was born last June she was in hospital for several weeks. I commuted to her every day. After my husband had to go back to work, we had to organise someone to care for the children. These were all high costs. I was expressing breast milk every three hours, day and night, for five and a half months. Directly after expressing, I was nasogastric, NG, tube feeding my Esther every three hours with the breast milk as this was the best recommendation from her cardiologist. In total, I spent 35 days just expressing and NG tube feeding Esther during the first six months of her life. I was exhausted on every level, as committee members can imagine. Nevertheless I did it because it was the best for her.

My work as a full-time carer is not valued by the Irish Government, which is very wrong and shocking considering the Irish Constitution. Caring for a baby with a lifelong disability is extremely demanding - physically, emotionally and financially. To just say a person is over the limit without any regard for essential expenses associated with this care is cruel and puts families in a desperate situation.

I have only one wish - for Esther to be healthy. I do not want hospital appointments, hospital stays, therapies or fights with Departments. However, I do not have this choice. Now, I feel I am being punished for accepting and loving my child, who is not perfect in the eyes of this world. If members met my Esther, they would see she is lovely. She is a beautiful child.

I work 24-7 with love to care for my Esther. I want to give her all the possible opportunities in this world. Without money, however, it is impossible. My husband pays huge taxes each month yet we are not able to get help when we need it just because we are not abusing the system. Every mother or father who cares for a special needs child since birth should be paid the carer's allowance in full - no questions asked. As if it was not hard enough for parents like us. Our lives are changed forever. No-one asked if we wanted it. Last November, I was awarded a carer's allowance of €12.50 per week. Two weeks ago, however, I received a letter from the Department stating that this is being reviewed, and that this payment might be removed and I will have to pay back whatever I received.

I understand that the carer's allowance is means-tested. However, I would like to highlight that it is not reasonable to accept means-tested calculations based on gross income and not consider other necessary expenses such as a mortgage, car repayment and other expenses linked with additional health complications if a person's child is sick. There are other expenses our family also incurs. We do not have a medical card or any other support. We are completely and 100% dependent on one salary alone. I have no idea how I can support my other children in their development going forward. It is impossible to survive like that for more than a few months if one has savings.

I am a qualified medical scientist but cannot work due to Ester’s care needs. How ironic that we are hardly meeting our survival costs and using our savings with this mean test. There is no way for a family in our situation to set any money aside for life or health emergencies, a pension or recreation to alleviate pressures linked with being a full-time carer. This journey is so lonely. It is important because from a long-term perspective, we are only humans and we have no break. We have no weekend and no full night's sleep. I want to be available for my family in good health. I am not blessed enough to have close or extended family around to help me, even a little bit, or provide a safety net for me or my children. Healthy children are a little different, and I know that because I have four healthy children. They could grow up with less and one day, please God, they will all be able to take care of themselves and contribute to the system and the whole society. Esther will not be the same, however. Money is important.

It has to be recognised that lower-middle-class families who bring special needs children into this world will not be punished for working hard over the years and not abusing the system. We are the backbone of society - all the working families - creating value for the future. I thank members for their time and attention. Have a lovely day from sunny Tuam.

I thank Ms Budayova. I thank most sincerely all three of the witnesses who gave evidence this morning. The contributions of Mr. Douglas, Ms Budayova and Ms Ryan were extremely powerful. I know each and every member of this committee was extremely anxious that we would hear direct evidence from carers at the coalface. Our guests have very clearly put across the challenges they are facing and they represent 500,000 people the length and breadth of this country. They have given a wide range of the challenges and issues they face on a daily basis and the impact of the current means test rules that are in place. Go raibh míle maith agaibh go léir for the evidence this morning, which was very useful, productive and powerful.

The first person listed for questioning is Deputy Ó Cuív.

I listened with great care to what the witnesses said. I think we all know the destination to which we want to get. The question for us as politicians working in the system we work in is how to get to that destination. There are two very simple wins we should ask for straight out, one of which being that carer's allowance should not be taxable. The taxation system on social welfare payments is quite complex. Pensions are taxable but assistance and disability allowance and so on are not. The invalidity pension is taxable. It is full of anomalies but a very simple remedy here is to put carer's allowance in the non-taxable bracket.

The second win is to deal with the fuel allowance anomaly, which has been raised by the Chair many times. The issue then arises in dealing with the system and the fact there are competing demands and that we will be told there are all sorts of unintended consequences in terms of how we actually progress. Can we make the whole leap to where I think we all would like to go in one jump or do we have to take it in steps? This is something we will have to reflect on again after this meeting.

One thing that comes across very clearly, particularly where people have children with a disability, is that it involves a very long period in their lives. It is indefinite, effectively. On the law of averages, often with older people, it is shorter-term care and could be quite finite. Things were looked at in the past, such as whether there should be gradation on the level of care to be given or in other words, the level of disability. There are challenges if we go down that route, however, with many appeals and the question of how we draw the line and actually measure. It is not that simple.

We may outline why we made a certain pitch as a committee last year. I stress this was not the destination but was an intermediate stop on the way. The challenge all the time is whether we should go for broke and maybe get very little or go for something less and maybe get it and build on it. That is something only we can judge in the circumstance at the time. I will go very briefly through the problem with the pitch we made with our budget submission. We suggested the income limits, allowing that our view was the Government was unlikely to abolish them in one go, would be increased to €500 and €1,000. In other words, they would be increased to €1,000 for a couple and €500 for a single person. The Minister did something for us on that one but nothing like we asked for. We wanted a very significant jump in one go. The second one particularly affects families. It does not affect older people as much, in other words, people caring for older people and particularly older people caring for older people. We also suggested in assessing the means that mortgage or rent costs would be deductible.

I imagine that for many families, that significant reduction would be of assistance in terms of the means test. The idea behind that proposal was to focus on the types of people who are before the committee today, who probably have a mortgage or rent costs. Other people I know from dealing with them in my clinic, such as older people, have gone beyond that stage of their lives.

A bugbear of mine that goes way beyond carer's allowance is the crazy issue of assessment of capital. I would love, and I think we all would, to get in one go to a place where capital for means-tested payments is assessed on the same basis as the medical card - on the actual income that is earned from the capital, which these days is virtually nil. However, given that we were not likely to get to the end game in one go, we suggested going from €20,000 to €50,000 for the disregard. The advantage of taking that approach was that we got the €50,000 disregard. This is the limit. Then we suggested that after that, the next €10,000 would be assessed at €10 per week. The big change we were suggesting was that after that, it would never go beyond €2 per week. This was a step on the road. The reason for that was to prove that this will not cost the Exchequer much. In my view, the capital assessment change would not cost much. However, it seems impossible to me, as someone who has fought this battle with the Department for years, to get them to see that. The only way of doing it is on an experimental basis. We must prove our point and then take the next steps.

I am outlining what we made the pitch for last year and why we made it. I do not think anyone who deals with people in a constituency clinic and listens to them, and who encounters the challenges faced by the three witnesses today, would not agree with the destination. While we agree on it, how do we get there?

Mr. Dunne would like to come in.

Mr. John Dunne

I thank the Deputy for that encouraging contribution. I will speak on where we want to get to. I will preface this by saying that we have a constructive working relationship with the Department of Social Protection, as we do with this committee.

Ireland does quite well in the area of income supports when compared with Europe. That is not to say it does good enough. There is a problem with charting where we want to go. We have gotten to a point where as long as income support for family carers is viewed in the same context as a special variation on income supports for jobseekers, where one does not want to factor in conditionality, one does not want carers going back to work because that will cost the State more. As long as that is the world view, we will probably struggle in many ways.

To us, the PUP and the artists’ scheme present an alternative way of conceiving of income support for family carers. We completely accept that would be a big step. Our ask in that regard is not that we rush into anything; it is that the Government looks at this seriously and considers what would be involved. I know that there are lots of very sharp rocks just below the surface, such as exported benefits. I know that the Commission is fundamentally not convinced by our distinction between assistance and benefits. There are all sorts of really technical issues at play in the background. I am not suggesting that this will be an easy ride. It is something that is worth aspiring to and moving towards, and a strategy for that is needed. We do not want movement on this in this year’s budget. We simply want a commitment to start an exercise that would tease it out. If can be done for artists, and if it can be done when the pandemic hits, we would like to understand why it could not be done for carers, who are a particularly deserving cause.

I would like to address the strategy that Deputy Ó Cuív mentioned of taking it one step at a time. Frankly, I have no argument with that at all. Making the carer's allowance non-taxable would be a help and addressing the fuel allowance anomaly would be a help. Yet, we are still left with the issue of who qualifies for carer's allowance. Then we get into the problem of the means test and, particularly, the disregards. Deducting the mortgage and rent costs is completely appropriate. We can get into arguments about moral hazard, such as when somebody lives in a nice big house. I do not know if you realise that Ms Ryan is addressing the committee from her home. To me, it looks like a high-dependency unit in a hospital, but it is her home. As she said, she had to pay for that herself. She got a contribution towards the costs. Not only did she have to pay for it, she has to pay to maintain it all. All of those expenses are simply not considered when one applies a means test. That seems to be a pretty extraordinary gap in the system.

There are many reasonable incremental improvements that can be made. I believe in eating the elephant one step at a time. However, we are also asking for a look at a radical change. I acknowledged in the speech as a frustration, but it is true, that within the social welfare system carers are generously treated. Our point is that the social welfare system is not the correct place to be locating them. I am not, by the way, trying to move away from the Department of Social Protection, which is a great Department to deal with. However, it is not for income support for working. That is my response and I thank the Deputy for a constructive contribution.

I call Ms Duffy, who will be followed by Ms Cox.

Ms Clare Duffy

Mr. Dunne has outlined the long game for fundamental change in how we position and view caring and care work. However, I am looking at Ms Ryan and Ms Budayova. That long game will not sort out their problems. We need changes in budget 2023. This year, we need the carer's allowance to increase to €325. The changes to which Deputy Ó Cuív referred, such as bringing the disregard up to €1,000 for a couple, would bring Ms Ryan and Ms Budayova into the loop. We need things this year, but the long game is the fundamental reform of the scheme.

Can I just say that I agree with the long game? However, what I think will happen is that a commission, expert body or whatever else will get a report. We are talking a minimum of two, three or four years down the road. I have been here long enough to know that. In the meantime, the house is burning down and the pressure is on the carers. We need a dual strategy.

Ms Clare Duffy

We need something that will bring Ms Ryan and Ms Budayova back into the loop this year, not three or four years later, because it is not fair.

I call Ms Cox.

Ms Catherine Cox

I was about to make the same point. I would add to that-----

While you have the microphone.

Ms Catherine Cox

-----while I have the microphone. All the carers who have spoken have made the point that they have to fight for everything, from a diagnosis to an intervention and to therapies. A parent was on the news last night. She has been told that she will have to wait five years before she can see a dietary specialist for her son. To look at carer's allowance would be to remove one battle from families who are struggling emotionally and financially.

I did a radio interview earlier this morning. The presenter asked me, "Do you think that everybody should get carer's allowance? If someone has money in their bank, really should they get it?". What I should have said to him was that is like me saying to him, "So, would you come into work every day, work every day and do 40 hours per week, or 160 hours per week in the case of a carer, and expect not to be paid for that because you have a bit of money in the bank or because your husband or partner works?". That is what carers are doing. They are working 24-7. The three carers who are here today are doing that every day. They do it out of the love for the person they are caring for. Yet, as a society and as a Government, we take that for granted. We need to step up and to support them. No carer should have to do this on their own, and thousands of them are doing that.

I know that Mr. Douglas had indicated. If the two women who are joining remotely want to come in at any stage, they should put up their lámha suas and we will bring them in.

Mr. Damien Douglas

I congratulate the two women on giving their stories, because nobody can tell it better than the people themselves. We can read about it, but it does not matter until we hear about it in the raw flesh with the emotion. The background story is so powerful. That is the case for so many carers. Most of us are private and we do not want to come into a room like this to bare our souls and our family’s circumstances.

We are private people ourselves, and we speak for those who cannot speak for themselves. My girls will never speak and they are 27 now. Hopefully, Ms Ryan’s and Ms Budayova's children will grow to 27 and beyond and will have a quality of life, but all of our children, whether they are children or adults, depend on us, the parents and the carers, to give them whatever quality of life they get. They may be in and out of hospital, they may be in and out of services, but that quality is going to be severely impacted by our ability to look after them if we are burdened by debt, by worry about income or by worry about losing carer’s allowance or having it reduced. Our allowance was reduced to €26.50 as part of a review. While I am not allowed to use certain language here, that is not fair.

It is not even about the physical money. It is about being recognised as someone who is doing something and as families that are giving a quality of life that nobody else can give. We say we value the life of our children but we do not value them if nobody else does. It is about being able to do it in real terms.

I mentioned our fear of getting older and frailer and living a life of poverty. I used to have hair but I do not anymore. I notice the Chairman used to have hair too. I am sorry for that.

Many of us are follicly challenged here.

Mr. Damien Douglas

Even the fact that someone who is so ill and so dependent does not have a medical card is madness, apart from carer’s allowance. The medical card covers a lot of costs and takes away some worry. Why is there an anomaly between what the child needs and what the family needs? To me, as a carer, it does not make sense.

We talk about being treated with dignity and respect. The words say all that but the reality on the ground is not that. We have to fight for everything. Even if we have a medical card, we have to fight for it every two or three years. Sometimes we are lucky and it comes automatically in the post, but other years we have had to go back and do the whole thing again. I have had to bring in my girls and ask people to show me what is different with them now compared with five or ten years ago or what will be different in ten years' time. Carers are fighting the whole time, and that is taking away essential energy that we need to look after our children. Even if our children are 27 or 37, they are still our children because the needs they have are equivalent to young babies.

I thank the witnesses for coming in this morning. It is a great shame that in 2022 in Ireland, one of the richest countries in the world, they have to come in and bare their souls and tell us stories that are so personal about their children, who they obviously love so much. It is a great shame that they have to come in here and do that this morning. However, I am very glad they are before us and very glad that we all got to hear their stories this morning.

For a long time, there have been massive issues regarding carer’s allowance, its inadequacy, accessing it in the first instance and accessing it at very reduced rates. In many instances, it comes down to the fact that, as is the case with many social welfare payments, it is household means tested, and that brings huge difficulty for carers where there is a family with a partner, a husband or a wife. Much has been brought forward here this morning in regard to abolishing the means test entirely and individualisation, which would take away the household means and would look at the carer as an individual. If a carer is not working and the means test is just looking at that carer, I imagine they would get the full rate and that would be it.

The foster carer’s allowance was mentioned. Could the carer’s allowance follow exactly the same terms and payment rate as foster carer’s allowance? From what Family Carers Ireland said, the foster care allowance is paid at a rate of €325 and that is increased where there are additional needs. I am not sure how people show what those additional foster care needs are but that payment would then be increased. Rather than looking at carer’s allowance and having a convoluted review that could go on and on, is there a simpler way? Should we move to what is there for foster care allowance? I imagine it would not take very long if that was to be done.

The recent report in respect of the cost of disability is very welcome but, of course, there is also the cost of care. If people are going into the supermarket as a carer or as a non-carer, we can guarantee their trolleys are very different. There is a cost of care and that needs to be acknowledged. The Minister of State has been clear in saying in regard to the cost of disability that the Government is looking at making a payment that is determined by the severity of the disability, and the payment will rise depending on that. Could something similar be brought in as an addition with regard to the cost of care?

In regard to carer’s allowance, it has been mentioned that outgoings are not counted, nor is the illness of the person being cared for, which, let us be honest, can vary an awful lot. No two carers are the same and the care needs of the person being cared for vary - that is absolute and we all know that. Is it a possibility that it could be looked at in a similar way to the medical card, where outgoings are looked at, considered and taken into account, but there is also a level of discretion for carers so, if a person has a lifelong condition, there would be flexibility whereby, like the medical card, they would put the financial to one side and grant the payment or support? Is that possible?

The 18.5-hour rule is something I could never get my head around. It is like saying to a carer that they will work full-time and they will be paid little or nothing, but they are not allowed to go out to educate themselves or work beyond those 18.5 hours. I know that has moved from 15 hours and that is fine but, to my mind, it is something that should be abolished immediately. If a carer is caring, we should take them at their word. They are caring for someone and they should not be told they cannot do this and they cannot do that.

A lady was in touch with me the other day. She is a home carer with the HSE, as well as caring for her own daughter. During Covid, many carers could not go into the homes to look after old people who are getting home care and other carers stepped up. She was one of those who stepped up. She did additional hours over the 18.5 hours and she has been punished since, yet she did what she felt was right.

The other thing I find odd in regard to the 18.5-hour ceiling is where someone is doing a bit of farming and they are asked how many cattle they have and how much land, and the person in the carer’s section behind the computer will determine the case based on the number of cattle they have or the amount of land they farm. It is bonkers and it should be abolished.

It is very important that the witnesses have come in today. The pensions solution was mentioned. The Minister of State said in regard to the Pensions Commission report that she will bring her proposals to Cabinet in the coming weeks. I love that term because “in the coming weeks” can mean anything. I raised it with her yesterday and she said the solution for pensions has been long promised. All of the time, carers are retiring and they are getting a State pension that is not the full State pension. That should never happen. They are entitled to no less than the full State pension. The longer this is delayed, the more carers going onto the State pension will suffer. I hope that, ahead of the budget, that will be done for this year because anything that can be done as quickly as possible should be done. Many things can be done without big reviews by the Minister of State simply engaging with those like the witnesses and Family Carers Ireland, and then doing what she can based on that, rather than having delays and reviews.

Ms Clare Duffy

I would not disagree with following a model like the foster carer’s allowance model and there is a lot of merit to that. As we have already said, the payment is not subject to social welfare means testing and it is not taxed, so there is much to like about it, absolutely. I would go a step further and ask why not just abolish the means test. Even to look at the level of severity of the condition requires huge administration in Longford.

Mr. Douglas referred to this figure of 6,000 people. I have been doing a bit of number-crunching on the figures and it is not easy to get to the bottom of this, but I am getting close.

It is never easy to get close to the figures.

Ms Clare Duffy

If the means test was abolished in the morning, about 6,000 people would be brought within the carer’s allowance net. We are only talking about 6,000 people, and they are the people who cannot get the carer’s support grant paid as a stand-alone payment or paid manually, as it is called, throughout the year. If we multiply that out, it is about €69 million a year, off the top of my head.

However, that is not the only additional cost because to be fair, people who currently are getting carer’s allowance at a reduced level would automatically shoot up to the big level. That is the kind of money you are talking about. However, the outcome of that and what we would achieve is something that people who have been in the system for a long time have sought. I would not mess about and start trying to measure the severity of the condition. Get rid of it. It will not be as bad.

A number of years ago, a significant amount of money was put aside to give all carers a GP visit card. It did not cost as much as we had thought it would. I do not think that this is as awful as we think it is. It is very doable. Therefore, I am in favour of getting rid of it. Again, we have a very good relationship with the people in the Department in Longford who administer this. They are very good people. They still will be incredibly busy if the means test were abolished, just making sure that the medical assessments are fulfilled and checking the potential requirement to provide full-time care. Even just those two things would protect the scheme enough from abuse. I am all in favour of just getting rid of the means test.

Mr. Damien Douglas

I thank Deputy Kerrane for her contribution. On pensions, it is very important because it is this kind of looking forward to a sense of having some sort of assurance of income. Most carers have had to give up work. They have lost their jobs and cannot work. They have already lost entitlement to pension from those works, even those in the public health service, as my wife and I were. The whole career has gone. Sometimes you sit back and dream about what you do when you retire because you will have your pension, lump sum and all that. Most families have lost that altogether, never mind the loss for their children. It is like a bereavement in a sense, because your children are not the children you thought you would have. You love them hugely but the dreams you had for them going off are not there because, to put it bluntly, you are wiping their nappies at 27 years of age, rather than sending them off to have their own children, get married and have a life. You have given up an awful lot of your pension entitlements and everything else. You may get something later on. There are huge losses that most families are very aware of, but people outside caring are not aware of them. That has to be said. It is not just the loss of the physical money here and now, it is the loss of the prospective money people would have had because they have sacrificed their careers to look after their children or the families that they love so dearly. Most of us do it willingly but also because there is nobody else to do it. If they go into the care of the State, what will happen? In most cases, the State cannot take them now. If it does, it is at far more cost than it costs us to do it. As the ladies have said, we are penalised. We have all had reviews and we have all been reduced. Yet, we are expected to keep smiling and keep doing it. It does not make sense and it is not fair. It really is not fair.

Ms Catherine Cox

I wish to add two things. Ms Duffy mentioned the cost of care in a home. Just to give that figure again, the study we did shows that the cost of caring for someone with a disability is an additional €244 per week. The other thing is that in the programme for Government, there were 18 commitments made to family carers as to what it would do to improve their lives. We reviewed that and did a scorecard on it just late last year, and not one of those 18 were fully achieved. However, the one that was nearest to being achieved was the pension one. We absolutely need to see that over the coming weeks and we would welcome that. Again, for family carers, as Ms Duffy said, it is now. It is for carers here today. It is this year and next year. It is not three or five years. It is today and tomorrow that they need to see these changes.

Mr. John Dunne

If the Chairman does not mind, I will keep a little bit of focus on the long-term bit. I am not taking away from the need for action in this year’s budget. I like the idea of taking the foster carer approach and applying it to all carers. It is not a social welfare scheme. It is operated and paid by Tusla. It is certainly a plausible way to go and quite a practical one. However, it would require a step outside the current box of thinking and that is why I am bidding for that. I would also say that it applies to carers of children. The question then would be around it applying to all carers. I do not see a reason why it should not apply to all carers, but the foster carer one applies to carers of children. Once they become adults, the scheme changes.

The 18.5 hour rules were mentioned. I want to acknowledge here that after several, if not ten or more years, we got up to 18.5. Frankly, I think the Department is genuinely worried about going any higher because of, again, the implications with the EU of appearing to undermine the rationale or justification of the scheme in European terms. Where that is so immediate of a concern is not actually around lifetime carers, many of whom have limited ability to go out and work anyhow, but looking at one group, we have focused on young carers who are making the transition from secondary school to college. They are involved in a substantial caring role at home. Effectively, to go to college, they would have to travel. In partnership with third level institutions, we developed distance learning programmes that were specifically designed to ensure that young carers would not have to spend more than 18.5 hours in class contact time, meaning contact time on campus. However, actually, the way the scheme is interpreted at the minute, all of the work that they do in their home is not appropriately accounted for. For example, if they decide to do coursework instead of watching television, that coursework counts against the qualification as they are becoming adult carers. There just seems to be something pretty egregious about that to me. That is to explain about the 18.5 hours position.

On the State pension, it was already said. We are hopeful that there will be a positive announcement. The delay is probably in respect of issues that do not relate to the carer element of that.

I confirm that I am in my office in Leinster House. At the start, I want to thank Mr. Douglas, Ms Ryan and Ms Budayova for powerful and moving presentations and for giving us an insight into their day and what they do. I also thank Family Carers Ireland for its continued constructive engagement with this committee.

I think we should strongly endorse the proposals put forward by Family Carers Ireland. Particularly, Mr. Dunne made the point very well on the artists scheme. That sets a benchmark. Carers should be at least brought in line with that. Mr. Dunne also referenced the pandemic unemployment payment, PUP, which had a baseline of €350. I think we should strongly endorse that and move the payment from €224 up to €325. We should strongly campaign and advocate for that in budget 2023.

In terms of the means test itself and the actual cost of care, looking in at Ms Ryan's situation, as Mr. Dunne said you would think she was in a high-dependency unit but she is at her home. She has incurred that cost and she gives that care in a loving way. The State needs to recognise that in terms of the cost of care and looking at that in terms of the income, and trying to get a balance in terms of the means test. Obviously, ideally, that means test would be abolished. As Ms Duffy said, there are safeguards in terms of continuity of care and the amount of time, etc. Those two points are the ones that we, as a committee, should home in on for budget 2023. The points made by Mr. Dunne were constructive and achievable and we should endorse them as a committee.

Does anyone want to comment on that?

Mr. John Dunne

I thank the Deputy for arguing to endorse our arguments.

I thank our guests for their presentations. It is heartbreaking to hear and see how people are experiencing something that we all know, because our clinics and constituency offices hear about it every day. I have just got an email about somebody who is a carer who is looking for support.

I will not reiterate some of the points Ms Duffy made. Obviously, that is a strong position we hold. I would make the point, and I am not sure it was raised already as I arrived a little late, that if one needs to make housing adaptation and cannot afford it, the local authority waiting list for the housing adaptations grant scheme is horrendously long and it is also graded, and one could be waiting for upwards of four to five years for such a grant. I had been dealing with a person who had a double amputation, was in a bed in his sitting room and had waited four years for that grant. Unfortunately, the poor man passed away on the week the housing adaption grant came through for him. That is wrong. It is heartbreaking to hear of such stories time and again given that we are a wealthy country and can afford to carry out such works.

Covid-19 proved that when the State wishes to do something, it can do it. When we thought some issues were immovable mountains, they were moved. This is one such circumstance. I doubt there are very few people who would not know somebody who is a carer or who has a family member who is a carer. In my family's circumstances, there is a carer. It is the most demanding job anybody could ever do. People do it because, as has been said, they love the person in need of care and they will never walk away from that. In some ways that has been exploited because people will never walk away from their mother, brother, son, daughter, aunt or uncle. We need to show that compassion that we all know is within us. We need to find ways to address these issues. There is nothing that cannot be done. We just need to have the political will to get them across the line.

I thank the witnesses for their presentations and comments. I hope many more people see and hear what we have seen and heard today. That would shift much of the political will we need to shift.

I will call Ms Ryan first to respond.

Ms Niamh Ryan

The point Deputy Donnelly made about housing adaptations is important. Members can see that I am in Liam's bedroom. We have another two rooms which are full of equipment. Nobody wants this stuff in their house but-----

Will Ms Ryan repeat that? We lost the connection for a moment.

Ms Niamh Ryan

Regarding what Deputy Donnelly said about housing adaptations, I am sitting in Liam's bedroom, as the members can see, and there is equipment all around our house. It is absolutely necessary but no family carers want it in their houses. However, it is what is needed to be able to take care of your loved one. We were very lucky. We got the grant from the local council. We took out a loan and our families and friends fundraised for us, and that is how we were able to put this in place for Liam. The fact this is what families have to do to have the necessary equipment to look after their child is wrong. The difference it makes to a family to have everything in place that is needed, even the simple matter of having a ceiling hoist, which members can see behind me, takes a great deal of pressure off a family. It makes life so much easier to have the correct equipment. It is pretty much a once-off cost. One has to cover the cost of maintenance and servicing every year but the main cost is once-off one. Once a family needs such equipment, they should really and truly get it because it is absolutely necessary. It takes pressure of them. It makes the physical side of caring for your loved one bearable and helps you get through the day. I thank Deputy Donnelly for raising that issue. That might be taken on board also.

Mr. John Dunne

I would make two points. I am conscious we are wandering into the ambits of other committees. On the housing adaptation grant scheme, which is a constant source of concern for us, generally speaking, the budget for it is underspent. The scheme operates by requiring co-funding by the local authorities. Local authorities democratically arrive at a position it is not something they tend to prioritise with respect to maximising their spending. I am not trying to cut across that but, fairly pragmatically, we are exploring the idea that in some way we might act as a co-funding body instead of the local authorities to enable the scheme to be used more flexibly.

It becomes a real crisis in the context of something like a hospital discharge. I have been working with carer organisations for 12 years. When I came into this sector, there had been a "Prime Time" special investigations programme on the sector. I still have etched in my memory the picture of an elderly woman carrying an adult man, her son, up the stairs because the only bathroom in the house was upstairs. That is life for some people and it is extraordinary. To be fair to everybody, there is a scheme. It is not working in the way most people would like it to work. I do not believe in jumping up and down and blaming everyone for bad faith. There is a problem with the scheme. If there is a way to tweak it administratively to make it work better, that is where I would go with that.

On the question of equipment, it comes more under the remit of the Joint Committee on Health and the health budget. There is something strange about the culture of what is good enough. We were speaking on our way into the Houses of a pre-budget submission a few years ago concerning a mother with a child with scoliosis who was in a full-body case to try to straighten her spine. That is something a child grows out of very quickly. Such a child would also be in a wheelchair because the child is in a body case and the child would grow out of the wheelchair less quickly. Such a family would quite regularly have a significant expense. This family had a discretionary medical card, which at that time had been withdrawn. They faced the prospect that if they did not have a medical card, they would either have to pay privately for the body case for their daughter or, presumably, they would have to take off the case when it became too small and leave their daughter with none. That is an inconceivable situation. At the end of the day, what was probably going on at a policy level was a game of chicken with the Department of Public Expenditure and Reform, although I do not know that. However, that family was put through the wringer in terms of having to worry about that right up to the day it happened.

Access to appropriate equipment is essential. Ms Ryan said that it makes a difference in terms of a family's quality of life. I would say it is more fundamental that. It has to do with health and safety. The use of a hoist for some people is essential. I would refer to the number of carers who come to us having already crocked their backs, and I am putting that in a mild way. There is no going back on that. It can be fixed but those carers will always have that weakness in their backs. That is an extra burden and challenge for those carers. The idea they cannot have the equipment they need is wrong. Many of those hoists are operated by two people if they are to be used safely. That prompts the question as to whether somebody would be sent in to help a carer at home to use it but, of course, the answer to that is "No". If a worker is sent in to care for a person who needs to use it, there must be two workers sent in to use it. However, if a carer is at home alone, that is the carer's business. What happens is behind the front door.

Both of those are very rich veins to be mined. In particular, if any member of this committee is also a member of the Joint Committee on Housing, I would be more than happy to talk to them about that scheme in due course. I would acknowledge those two points.

Ms Clare Duffy

Ms Ryan mentioned fundraising. I would point to another issue we could add to our list of anomalies. I have dealt with a few cases recently where families in very difficult situations have had people raise money through the GoFundMe platform. Such money is assessable in a means test for carer's allowance. For families with a child who has been diagnosed, for example, with cancer, for whom €100,000 has been raised, that GoFundMe money is assessable and the family can lose their carer’s allowance. Anything that can be liquidated or accessed immediately is included in the means test. I would stress the Department does not want to do that. The people who operate the system in Longford do not want to do that. They contacted us to advise the legislation does not allow for this relatively new phenomenon. It is another anomaly in the system.

They do not want to do this but they have to.

I agree with the Chair and I welcome our visitors. Their testimony has been very powerful. As Deputy Donnelly said, it is simply heartbreaking. Everybody needs to hear what Mr. Douglas, Ms Ryan and Ms Budayova have said. Most important, we need to remember why we are here today. This is because of Una, Ailis, Liam and Esther. They are the most important people we can speak about today. They are the people we need to care for and for whom the witnesses are doing such an important job.

The means test should be gone. I agree with what has been said by colleagues. I know the committee will discuss this. It is something we need to look at. We have proposed a disregard of €1,000. This also had to happen. Ms Duffy spoke about 6,000 people who may come back into the system if the disregard or means test were gone. Are we happy this is the figure? The replies to parliamentary questions my colleagues have received from the Minister state 50% of applicants do not receive a carer's allowance. This is disgraceful in this day and age. What are the figures on those who do not qualify for carer's allowance?

I know it is not in the remit of this committee but a review of housing adaptation grants is taking place. It is very important that we feed into it. This involves two issues. The maximum grant is €30,000. I am dealing with a case were the cheapest quote for a woman coming from hospital in Dún Laoghaire is €75,000. This means fund raising and going back to the community welfare officer to try to get additional money to accommodate the lady. It is disgraceful this has to happen. There is a review taking place. Unfortunately it will take a year but it needs to happen and happen quickly.

Deputy Donnelly spoke about social housing. Carers in social housing are waiting three to four years for their issues to be dealt with. This is also a serious problem. In Kildare there are six cases of carers waiting for extensions. The average waiting time for these six families is two and a half years. This is what is happening in social housing. There is the housing adaption grant for those who are not in social housing and waiting lists for those in local authority social housing.

I want to mention sharing care. I have come across two cases where people share the care of a loved one. Unfortunately in one of the cases a social inspector knocked on the door. The lady being cared for was just out of hospital having been there for six months. Why are we sending social welfare inspectors to investigate this? It is beyond me. What this lady is going through with her medical issues is beyond comprehension. A social welfare inspector was tasked with the job of going out and inspecting the level of care the person was getting. It is absolutely disgraceful. I am not sure whether the witnesses come across this but I have come across it twice in recent weeks and I do not understand it. Perhaps the witnesses will comment on it.

The witnesses have my support and the support of the Labour Party. We have raised this continuously and we will continue to do so. I will go to the Seanad to raise it again. As I said at the beginning of my contribution, the more people who know about Una, Ailis, Liam and Esther, the better, because they are the stories. I thank Family Carers Ireland for all the work they do.

Ms Clare Duffy

The Senator asked how we can figure out whether 6,000 is the complete figure. Of course, we cannot do so. We can only work off approximates. I am terribly bad at explaining figures and I will be squinting at everything. The closest approximate figure we have to the number of genuine full-time family carers who provide care to someone who has been medically assessed as needing full-time care is the number of people who receive the annual carer's support grant. It is not means tested. The only difference between it and carer's allowance is that the carer's support grant is not means tested.

In 2021, 115,000 people received this grant. There were 91,000 people in receipt of carer's allowance and 3,000 people received the carer's benefit. We also have 51,000 children who received domiciliary care allowance. All of these people get the carer's support grant. There is double counting. Many of the 91,000 who get the carer's support grant because they get carer's allowance do not get it twice because the child is also getting the domiciliary care allowance. There is all of this double counting. The only way we can measure how many people would be brought into the net is to look at how many of these people receive the carer's support grant as a stand-alone payment and get nothing else. It is the one thing they get every year. From discussing this and speaking to very helpful people in Longford the closest figure we can come up with is approximately 6,000.

I will break down this 6,000. We absolutely know that 4,363 carers received the carer's support grant in June last year as a stand-alone payment. Peppered throughout the year are manual applications that can be received until the end of the year. They can also come in until the end of the following year. There is an average every year of approximately 2,000. We can say roughly that anywhere between 6,000 and 7,000, and 7000 is at the generous end, will be brought into the net. This is the closest approximate we have but it is not a bad one. It is not the only cost because, as I said earlier, 50% of carers on a reduced rate will have that increased. We would need a PhD and a calculator for this one.

Mr. John Dunne

On the inspections I have to be honest and say that it has not come on my radar. We have not picked it up as a systemic issue. To be fair we have no argument in principle with inspections but I have no insight into how particular cases are chosen and what criteria or brief is given to the inspector. If there is a systematic problem we will certainly happily take it up. It has not come up organically from carers.

Ms Clare Duffy

Anecdotally when an inspection such as this happens it tends to be where a report has been given externally to the Department that something funny is going on. This tends to be where an inspector gets involved. With regard to the care sharing arrangements Senator Wall referred to, on the previous occasion I got figures from the Department fewer than 50 of these arrangements were in existence. It is where one person cares one week and a sister or brother cares the other week and there is a set arrangement. In my experience when an inspector gets involved something has triggered it.

I will not repeat everything that has been said and I will be brief because we are all on the same page in supporting what the witnesses are trying to do. I do not want to sound in any way condescending to people but really and truly we all meet people, as I do in Roscommon and Galway, who cry because of carer's issues. The Chair knows, and I know from my in-laws, how frustrated people can get. It can drive people daft at times. Then they learn to stand back and see the appalling pressure they are under. We all recognise this.

I am glad Ms Duffy referred to the staff in Longford in the Department. They are excellent. I also deal with Roscommon County Council when emergency work has to be done on houses. The Chair and Deputy Kerrane also know how excellent it is. It has come on in leaps and bounds. Sometimes it could do with more money but it deals with people in these situations very quickly and urgently.

One thing we must all realise is that we are now in completely different times. Energy costs have put severe pressure on people such as the witnesses. The call for the means test to be abolished should be followed up quickly by the Government. It should be taken away. We are speaking about exceptional circumstances and people in very challenging circumstances. We are speaking about people who probably only get a few hours' sleep per night. Therefore, the costs of running their homes have increased significantly. As far as I am concerned we are now in a completely different place.

As members of parties we will bring forward the suggestions the witnesses are making to see what changes we can make. What are the two things we should prioritise for 2023? We will not get everything. I ask each of the witnesses what would be the two things they would now prioritise for us to try to get changed for 2023. All politicians recognise that Family Carers Ireland are exceptional people in fighting the case.

We deal with many groups, but this organisation is on the case constantly. They are people who are easy to deal with and they make their case. I know they respect our situation and we respect theirs. What two things would they prioritise?

We will give the witnesses some time to think about that, particularly the three front-line carers. If there were one or two requests that they would like to see happen before the end of the year, what would they be? To pick up on what Senator Murphy said regarding the support provided by Family Carers Ireland, I echo the sentiments of Deputy Kerrane and Senator Murphy about the Trojan work that is done locally. Ms Bernie Dowling in Roscommon does phenomenal work. She is a very strong advocate for the people she represents, to put it mildly. Perhaps Mr. Douglas will respond first, followed by the two ladies. What are the one or two requests that would be at the top of their list?

Mr. Damien Douglas

One thing mentioned by Ms Ryan was that her child does not have a medical card. That appears to be disgraceful. I do not know if that comes under the remit of this committee, but the fact that the medical card is not available causes big problems. That is one thing. Why is there no medical card? It cannot be means tested; it should be based on the needs of the person. Second, if the means test cannot be abolished, the bands should definitely be widened. That would make a big difference to many people.

The third is specifically to take into account the huge cost involved in providing the care. I have to replace a wheelchair van in the coming year. It is going to cost me the guts of €45,000. That comes from money that I am means tested on already. I have saved it because I knew this was coming. People have had to pay for their own equipment. That should not happen. Why should we be penalised? I cannot have steak on a Sunday because I have to pay for my van next week or next year or I have to put diesel in it. I am being facetious, but one is constantly concerned about the cost of living normally, not to mind the extra costs that result from providing care, about which there is no choice. One has to do it. My girls cannot give me any other options. They cannot tell me what their will and preferences are. I have to look after them in every way possible. If the costs involved in the cost of caring could be taken into account, that would be a massive advantage.

Ms Niamh Ryan

I agree with Mr. Douglas. Abolishing the means test would be the big one. If that cannot be done, definitely expand the bands greatly. Also, the carer's allowance rate could be raised quite significantly, as was mentioned earlier, perhaps in line with the artist rate of the pandemic unemployment payment, PUP. There is also the cost of care, as Mr. Douglas said. I have to correct one thing. Liam has a medical card. I believe Ms Budayova was speaking about that earlier. The cost of care includes the cost of the wheelchair vans and the cost of electricity for running all the equipment in the house. The cost of care is crippling. We have no option but to buy these big diesel wheelchair vans and it is a huge expense. It is the initial outlay really. There are the diesel costs and everything else as well, but the initial outlay is very difficult for families. If the cost of care could be taken into consideration as well, that would be a big one for us.

Ms Anna Budayova

Yes, I agree. There should be an end to the means test. We know the diagnosis of my baby who is only 11 months. We already have five diagnoses. That is expensive; the cost is huge. We know what is ahead of us. It is probably not good to say it - it is terrible - but there is a big chance she will tick more boxes and more diagnoses, which we already have to deal with emotionally. With any visit to the hospital there is stress about what it will be this time, and one is not ready for this. A huge thing for any parent in our situation is not to need to be worried that there will be no money for diesel or for appointments or for babysitting because they are massive costs. That should be represented and we should be accepted as citizens. For me, I feel as if I am a second-class citizen because I am caring and because this is not recognised. That would be different for any one of us.

Mr. Damien Douglas

To clarify, sometimes we need equipment such a wheelchair van, and some people see that as a luxury. However, they are vital necessities. Whether it is Mercedes or a Ford Kombi that one gets converted, one needs it because without it one's children will not go out. Try to get onto a double-decker bus with two wheelchairs to travel from Lucan to Dublin - it will not happen. One needs that. They are seen as lovely vehicles, and they are because they have to be comfortable, but they cost a huge amount of money in addition to money to get them adapted for one's needs. They cost huge money to run as well. They are not luxuries, but vital necessities to have any kind of quality of life and to get out. For ourselves, the girls are lucky now to have day services, but there is no transport provided. We have to bring them up and down every day. We have to have that for them. One cannot depend on CIE, Dublin Bus or anyone else to do that.

Ms Catherine Cox

To add what everyone said, in the short term there should undoubtedly be an increase in carer's allowance in the budget to €350, which is equivalent to the PUP. Outgoings such as rent, costs of care, in particular, travel, dietary requirements and incontinence care should be included. A broader issue is to stop family carers having to bare their souls through the media and coming here today and having to tell their stories, and that is what has to happen for one individual to get his or her situation fixed. We support people to do that because the system is flawed and broken. Rather than trying to just react to he who shouts loudest, we must fix the system. The increase in carer's allowance and abolishing the means test would be a very significant and positive step towards that.

Senator Garvey had indicated a wish to speak but she is not online at present. I call Senator Burke.

I support the many things our guests are seeking, particularly regarding the means testing. I believe it should be abolished. I also fully support the increase in the carer's allowance. I see at first hand in my mother's house the great work that carers do. She is 95 years of age and the care they give is unbelievable. Family carers cannot give the same care that these carers give. What they do is specialised and they know what they are doing. I have seen that they give loving care to older people and I support the call for the increase in the allowance for the family carers. The work they carry out is incredible and they should be properly compensated for that work. I honestly believe the means test should be abolished. We need more and more carers. Why should we be putting obstacles in the way of good carers who could be carrying out some very valuable work? The fact that there is a means test deters them from doing that type of work. I fully support the many issues that have been raised and I compliment our guests for coming here and making their contributions today.

I call Deputy Conway-Walsh.

Thank you, Chairman, for letting me contribute as I am not a permanent member of this committee. However, I particularly wanted to attend the meeting this morning to hear the proceedings. I am very glad I did. I am glad on two fronts. The testimony from Mr. Douglas, Ms Ryan and Ms Budayova was extremely powerful. I am reminded of when I was a member of the finance committee and the people who were impacted by tracker mortgages appeared before it and told their stories.

That was real turning point in that campaign and in getting the financial institutions to listen. I hope people are listening today. I am heartened that all of the Government representatives here today support Family Carers Ireland's strategy. They are representatives of the Government and they are saying that this must be done.

There is a commitment that has to be followed through on not only with regard to this budget, but in respect of what needs to be done in the long term. It is very obvious to us all that the system is broken and that there is failure here on the part of the Government and the market on many different levels. We have the evidence. Often, when tackling a problem in government, there is not sufficient evidence to back up what is being said but we have the economic evidence and the evidence on every other front so we do not need to gather any more. We know the system is broken and we know what needs to be done. I can give an example of this broken system from the people I deal with. Somebody I know has autism and is asked every two years whether they still have it. I am not a medical practitioner but I know that, when someone has an autism spectrum condition, they will still have it later. It is not something that goes away overnight. Why are people wasting so much time? There is so much wastage here. So much money is wasted across the system in analysing, investigating and doing everything else that needs to be done.

A couple of things really stood out for me in Ms Ryan's testimony. She mentioned that, when her carer's allowance was slashed by €90 a week, with the allowance equating to 78 cent per hour, she was told that she should not look at it like that. There is a message there. That really resonates. It suggests that it is somehow the carers' fault and that they are looking at the wrong way rather than the system being broken and failing them. Ms Budayova said that carers are punished for working hard and not abusing the system. It is not only her who is being punished for working hard, but her other children and her partner as well. She spoke about not being valued and the physical, emotional and financial strain involved. The physical and emotional strain probably cannot be taken away to any great extent, although something can be done for the physical strain with respite services. I have major problems with such services not being available. I met the autism action group in my county of Mayo a couple of weeks ago to discuss the lack of residential places available. There is no respite for people at all. That is something which needs to be invested in.

We and the Government make choices. We gave a 9% VAT rate to hotels and the hospitality sector but, if you try to get a bed in Dublin tonight, you will be charged €425 for a single room. They are absolutely packed and booming and we saw fit to cut their VAT rate to 9%. Then you look at what Ms Ryan and Ms Budayova are being put through. We really need to examine the system. I hear what the witnesses are saying with regard to medical cards and widening the bands. They have provided quite a lot of evidence as to what needs to be done.

I will commend my colleagues, Deputy Kerrane - who is here and did not know I was going to say this - and Deputy Tully. They compiled a charter for family carers for our party. Many of the things that were mentioned today are included in it. That goes some way towards showing our intent to tackle the issues that are there.

I have one question for the witnesses. As bad as things were financially six months ago, will they explain the situation for family carers in the here and now in light of inflation, the cost of living, the price gouging and everything else that is going on? Family carers are struggling and trying to get through the cost-of-living crisis.

I do not know who wants to kick off. Deputy Conway-Walsh was not here at the start of the meeting but I made the point then that the Minister is personally committed to this issue. From talking to Members who are in the Government, those who support the Government and those who are in the Opposition, I know that this is one issue that crosses all party lines. There is unanimity as to where we want to go. We now have to find a vehicle to actually achieve it.

Ms Catherine Cox

I will answer on the costs. During the Covid pandemic, Family Carers Ireland set up a crisis fund because so many carers were struggling financially. Over the two-year period, we have given out more than €350,000. That is used to put food on tables and oil in tanks. We bought bite-proof clothing for one mum because her daughter was biting her. Her behaviour had regressed because she had lost all of her services and supports. We cannot imagine how challenging the Covid pandemic has been for family carers. I refer particularly to carers of children and adults with intellectual disability and behaviours that might be challenging, but it has been challenging for all family carers right across the board. They have struggled significantly and then, as the Deputy has said, the cost of living has increased. Those on carer's allowance are not included among those eligible for fuel allowance. Those pressures have been immense. We have never seen so many carers struggling financially as we have over the past two and a half years and we continue to see that as we come out of Covid.

Ms Clare Duffy

I have a very neat answer to the Deputy's question. The study done by the Vincentian Partnership to which Mr. Dunne and Ms Cox referred was based on a basket of goods and services that were priced in March last year, before the cost-of-living crisis. Before this crisis, the additional costs facing families averaged €244 per week. That has obviously increased. What is really interesting about that is that Sr. Bernadette Mac Mahon and her team in the Vincentian Partnership found that those additional costs do not only come from the things we know of and have talked about today such as transport and household goods. Families like Ms Budayova's, Ms Ryan's and Mr. Douglas's are also having to pay privately for services that are meant to be public. I do not think Ms Budayova will mind me using her example because she has given me permission before but she has just been advised by her local public health nurse to pay privately for an occupational therapist because she has no hope of getting one through the public system. That is the advice that is being given out. I do not blame the public health nurse in that instance. That is where a lot of these costs are coming from - paying privately for what should be publicly available.

Ms Anna Budayova

I will have to correct Ms Duffy. Unfortunately, Esther had several choking incidents. Up to that, no one was listening to me but when I contacted top management of the early intervention services, having sent several emails, I was able to avail of one visit from an occupational therapist and a speech therapist. They should help me. I never mentioned in my earlier statement but, because Esther was nasogastric tube-fed for nearly six months, she never developed muscles in her throat or those needed to chew properly so she was not able to eat. That led me to a situation where I was desperate. I was begging everyone because my child was choking. At this point, Esther was assessed by someone. She had a proper sitting. Again, it is a long story so I will not go into detail but I was put in a situation where my child nearly died. Only at that point was I able to get this treatment. What was available through the public system was not enough and I had to go to a private speech and language therapist, who is helping Esther to properly develop her muscles rather than just observing how she is eating.

Mr. John Dunne

I will mention the wider picture. We all know there are staff shortages in many professions within the health service that are making it problematic to access services. One of the responses to that from the HSE - we are negotiating with it at the minute but you can understand where it is coming from - is a suggestion to train family carers to do a certain amount of this at home. That is a constructive approach involving social solidarity but the income support framework and the attitude to how we value caring sits very oddly with carers playing a key part in helping to resolve a crisis.

Many carers are nervous and unhappy about the idea that they will get a three-hour training session after which they no longer need an occupational therapist. Clearly, we are not buying into that scenario, just in case it sounds as if we are. The idea that people might be able to do more at home is certainly one that should always be looked at but only in the context of a system that values and appreciates them and does not leave them out of pocket for doing it.

I apologise that I had to leave earlier to go to the Chamber. I am not a member of this committee. What we have been discussing this morning is very much in line with what we have been discussing at the Joint Committee on Disability Matters, of which I am a member. We see the same problems happening. One of the issues that comes to mind is the individualisation of supports for people, which is a long-term ambition of the Joint Committee on Disability Matters. That would be backed by the UN Convention on the Rights of Persons with Disabilities.

Ms Budayova is from my home town of Tuam. We have been working with her and her husband. She has described the issues her daughter Esther has. They are different from those of other children. The challenges that people face are different.

An Indecon report on people with special needs or disabilities found that costs are between €12,000 and €15,000 per annum on top of whatever people are getting. That issue needs to be addressed and the Government is aware of it. It crosses this committee, the Committee on Disability Matters and the Committee on Housing, Local Government and Heritage. Deputies Paul Donnelly and Kerrane spoke about the shortfall in the housing adaptation grant and noted that the grant amount is fixed even though costs are rising. We need to look at that in the round.

When people appear as witnesses before a committee like this and bare their souls to outline what is happening in their homes, it is an indictment on us as politicians that we are not taking better care of them. Unfortunately, there may be some things in political life that we might not be proud of. We really need to take on board what we have heard this morning. As Deputy Ó Cuív said, we have short-term gains coming into the next budget. We also need to try to fix this problem permanently over the next two or three years.

People in rural areas have major problems with transport to get them to hospitals for appointments as well as getting people to mind their other children while they might have to spend three or four hours in a hospital. We take all this for granted when we are not involved in it.

I thank the Chair for allowing me to contribute. I will endorse whatever proposals come from this committee. Perhaps the Chairman could speak to the Chair of the Committee on Disability Matters. Perhaps we could make a joint submission on the budget as a united approach has more impact.

I again commend the witnesses on their bravery in addressing the committee today.

This committee is willing to work with any committee to progress the issues we have come across here. I know that next month we will have a meeting with the Joint Committee on Agriculture, Food and the Marine specifically to deal with issues regarding carers involving departmental officials. We are willing to work with every committee in order to facilitate these issues.

Some members had to leave and they have sent me messages which I wish to put on the record. Deputy Joan Collins had to go to another meeting. She wished to thank Mr. Douglas, Ms Ryan and Ms Budayova for their testimonies. They have made a powerful case for fundamental changes that are needed for carers. She wishes to thank Family Carers Ireland for its proposals.

Senator Garvey also indicated she had to leave. She has read all the correspondence and it seems to her that the bottom line is that we need to increase the carer's allowance. If the means test is to stay, it needs to be raised beyond the current threshold. She wanted to ask if it is true that carers' work in the home is not recognised as work, in that they only qualify for a non-contributory pension, a position she believes to be unsatisfactory. The committee and the Pensions Commission have made recommendations on the pension issue. Hopefully we will see some positive progress on it soon.

Ms Clare Duffy

Ms Cox and I were lucky enough to present to this committee this time last year specifically on a pensions solution for long-term carers. She and I were also lucky enough to have an audience with the Pensions Commission early last year. The commission's report last October took on board all our proposals pretty much word for word. If that is accepted by the Minister, as we hope it will be, it will really address that long-standing pension anomaly that has affected so many family carers, particularly, but not only, farming families. Hopefully, in the coming weeks we will hear an announcement to address that.

The Pensions Commission has proposed that for anyone who is a lifetime carer, which is defined as someone who has cared for more than 20 years - normally parents of children - those 20 years of caregiving will be recognised as if they have been in the workforce and they will have contributions paid in respect of that. That should give them a full complement that would warrant them getting the contributory State pension at its maximum level.

I seek one quick clarification from Family Carers Ireland. In his opening statement, Mr. Dunne mentioned that he believed that a review to be undertaken would possibly see the abolition of the means test or the establishment of a participation income for carers as recommended in the NESC report in 2020. Will Family Carers Ireland now formally call for the Minister to abolish the means test in the budget? I imagine Family Carers Ireland has the same issue that the rest of us have had. We have not been able to get a figure. It is welcome that Ms Duffy has some figures. Our biggest barrier is that the Department of Public Expenditure and Reform has not been able to give us a cost of abolishing the means test for carer's allowance. It is welcome that figures are now available and we can all get on board. It is not an either-or; it is the abolition of the means test. Is that clearly what Family Carers Ireland will request? I want to ensure we are all on the same page. We will publish a report making recommendations. I would like us to be very much in line with what Family Carers Ireland is requesting. The carers who have appeared before the committee today have been clear that is what they are looking for and I presume it is what most carers are looking for.

Ms Clare Duffy

The participation income and the abolition of the means test are not mutually exclusive; they are almost the same thing. Participation income is like a universal basic income which just recognises the contribution by the recipient. In this case the carer is getting a guaranteed payment, the carer's allowance, in recognition of the care he or she provides and his or her contribution to society. They are almost the same thing; in fact, I think they are the same thing. It would not necessarily be the Department of Social Protection that would undertake the review of the carer's allowance because it must be within the broader health and social care environment. The terms of reference should include comparing the abolition of the means test with the establishment of a participation income, as recommended by NESC. To my simple mind, they are not very different if different at all.

Mr. John Dunne

In response to the Deputy's direct question, we will call for the abolition of the means test, recognising that we might not get it but we will certainly call for it. If we do not get it, we will be looking for its effective abolition. I always acknowledge with social protection issues the enormous technical complexities relating to the European framework in which they are created and operate.

I wish to pick up on a few points in the evidence given this morning.

I had a considerable amount of engagement with the former Minister for Employment Affairs and Social Protection, Senator Regina Doherty, regarding the 18.5 hour ceiling, which was increased from 15 hours. We made significant progress on getting that over the line at the time. The issue specifically related to full-time carers who had an older person in an adult training centre. The case I had was that of a younger person who was in a training centre and out of the home for in excess of 20 hours per week. This person's mother wanted to be able to continue to use home help, which she had done, but she was being penalised because of that, even though it was not possible for her to provide any care. I can see the concern the Department has but the way around it is to have a discretionary element in respect of the 18.5 hours, where there is flexibility in individual cases on education and a young person being able to study at home, which third level institutions can facilitate and were able to do over the past two years. That flexibility should be inbuilt to facilitate young carers in being able to gain a third level qualification with that type of hybrid model. The Department should be able to have that flexibility.

From my personal dealings with the officials in Longford, they have been more than helpful in individual cases. They will bend over backwards to try to approve a carer's allowance application but, to a certain extent, their hands are tied by the guidelines and regulations that are laid down. Where I have gone to them and explained the circumstances, they have taken a can-do attitude. I will put on record the work being done by the staff in Longford.

Deputy Canney and I have spoken at length about the housing adaptation grant. A constituent of mine, who is from the same county as the Deputy, has received the maximum grant of €30,000. This person's only source of income is social welfare. The credit union has facilitated this individual as best it can and granted a loan of €8,000, but the cheapest price they have been quoted to carry out the work is €45,000, which is €7,000 short. It looks like that person will have to go on to the local authority housing list to look for housing because the current house is unsuitable to meet their needs due to a shortfall of €7,000. The other alternative is the person, even though they are under the age of 66, goes into long-term nursing home care. Both options are a multiple of the cost of making up that shortfall for a downstairs bedroom and bathroom. It is something that needs to be looked at urgently.

Clearly, the call from today's meeting is we need a radical change in the financial supports for carers that are in place. We need to consider it from a very different base and very different criteria that should not be based on the means coming into a household. It should be based on the care that is being provided. That is something the committee will reflect on and I have no doubt will incorporate into its recommendations.

The firm view of every single member of this committee was we were extremely anxious to hear directly and at first-hand from carers today and that their story would be put on the public record. Today's meeting was very much about giving voice to their issues. I particularly and most sincerely thank Ms Budayova, Ms Ryan and Mr. Douglas. I will leave the last word from today's meeting with them, if they want to come back to make a final comment.

Mr. Damien Douglas

We each gave our story today. We each opened our hearts to the committee and to whoever else sees the meeting. We were constrained by the time we had to make our presentation. If we had longer, and a cup of tea and a scone, members would hear an awful lot more harrowing things, as well as joy. It is not all bad news but it is real news, real family life and real family dilemmas. That might be for another occasion. If members were to dig into any of our stories, they would get an awful lot more stuff. Certainly, there are things my wife would not like me to say in public to anybody else because there are real things we just cannot share with anybody else, except possibly with other carers because they know it, they are living it and they know where we are coming from. That is one point.

The Chairman mentioned somebody whose son goes to day services. As I said, when a child who is attending a special school reaches 18 years, school is gone and there is the whole thing about getting appropriate day services. If people are lucky, those services will be five days a week, if they are very lucky they will be six hours a day, and if they are very, very lucky they will include transport to and from services within that six hours. It is not as though those six hours a day are theirs to go off and sunbathe or anything else. These are the hours they spend washing, cleaning, hoovering, shopping and doing all the other stuff that needs to be done, even just eating peacefully and getting a bit of lunch. In our case, once the girls come home at 4 o'clock in the evening or whatever, we are at it full time with them between feeding, changing, some sort of therapies and whatever else we need to do. Even when they are in bed, we have monitors on to check whether they are choking, having seizures or whatever is going on.

Due to Covid, respite care is more or less gone. Where it has come back, it is very limited compared with what it was. If someone is unlucky enough to get Covid, he or she is still on call because if the button comes out, that person is called to go and fix it. It is not like there is staff on duty. If there are any problems, we have to bring people to hospital because there is no staff cover. We spoke earlier about using a hoist. When the girls were in school, I was involved in drawing up policies for hoisting. Health and safety is very explicit in that there has to be two people to do it. I have no problem with that but when I go home, those policies are totally invalid because my wife is not always there, or I am not there when she needs to do it, and it comes down to one person alone. There is a major dichotomy between what we expect from professional services and what we as carers have to do on a day-by-day and hour-by-hour basis.

There are more anomalies than just money and so on. It is about understanding what the life of a carer is. This is not giving out, moaning or anything else. It is trying to have people understand the real story behind it.

Ms Niamh Ryan

I thank all the members for giving us this opportunity. The reason I chose to sit in Liam's room was to tell a story through pictures as well. I often think you can tell somebody a story but if he or she can actually see the situation, it makes it clearer. As Mr. Douglas said, there is so much work involved and we are going 24 hours a day. Even when Liam is in his special school, I have to stay around home because I never know when I will get a call that he is unwell. We never get a full break. This will sound a little daft, but we are actually quite lucky that Liam is under the care of LauraLynn children's hospice. That is the only respite we get during the year. If it was not for LauraLynn, we would never get outside our home at all. We are depending on these charities to give us an opportunity to be able to do something with our other children. As I said, Liam is a twin. Sean went into first year this year, which is a big change in his life, so we are trying to look after our whole family.

As Mr. Douglas said, no two families are the same, but there is so much joy. Every family carer wants to be able to look after their loved one in their own home. All we are asking for is a little bit of support financially and with services. I refer to the whole dynamic of caring for someone with special needs or with an illness and the whole package in that context being examined. It will only be through giving family carers like ourselves the opportunities to tell our stories that we will be able to educate other people. I say that because it is hard to know what is involved in being a family carer. I would not have had a clue what family carers did before I had my boys. It is very hard for people to know what is involved in being a family carer, so I appreciate this opportunity to tell our story today. I hope something will come out of this meeting and that improvements can be made for all family carers in Ireland. I thank the committee.

Ms Anna Budayova

I sincerely thank the committee members for listening. I am only sorry I was not able to hold back expressing my cares. To be honest, I realise I have been recounting my personal story and it was hard to control that. I am sorry. I love my daughter and I always do everything possible in my strength for her. I am so happy to have this opportunity to say out loud that she matters. It is very important to say our loved ones matter to us as parents and carers, because no one sees what we are doing behind the closed doors. The members were listening today, however, and I truly appreciate whatever support might be possible. The committee is limited in what help it can give us now, and we know that, but it supports us in what we are trying to do, and this is the message to be taken away by every parent in Ireland. I say that because anyone could be in my shoes any time. I thank the members of the committee very much.

I again thank each of the witnesses. They have given us a real insight into another side of family life and its dilemmas. It is important, however, to say there is also real joy in each and every one of these families. I sincerely thank the witnesses for attending and for their constructive and positive engagement with the committee. We will shortly discuss our next considerations of this matter in private session. Our intention is to present a report on our deliberations to the Minister, Deputy Humphreys, and to Dáil Éireann shortly thereafter. We hope the committee's deliberations and recommendations will be taken on board by the Department and considered by the Minister. The committee will now go into private session.

The joint committee went into private session at 11.53 a.m. and adjourned at 11.58 a.m. sine die.