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Seanad Éireann díospóireacht -
Monday, 10 May 2021

Vol. 276 No. 1

Carer's Allowance: Motion

I move:

That Seanad Éireann:

recognises:

- the important role that carers play in looking after our loved ones in their homes;

- the importance of family supports, where available, in caring for loved ones;

- that in 2020, the Irish Health Survey showed that there were over 500,000 family carers in Ireland and of that, 88,900 are in receipt of Carer’s Allowance and over 52% of carers work outside the home in paid employment in addition to their role as carer;

- that family carers, while undoubtedly cherishing their loved one, provide care at times at considerable personal sacrifice;

acknowledges:

- the Government has increased the expenditure on this support by over 50% in the past 5 years;

- the importance of home care packages in providing vital additional hours of supports to families caring at home;

- the role that Nursing Homes and Disability Services play in caring, particularly for those with complex needs or with life altering conditions;

- that over 135,000 carers will receive regular income supports to the value of approximately €1.5 billion in 2021, which include Carer’s Allowance, Carer’s Benefit, Domiciliary Care Allowance and the Carer’s Support Grant;

- that many in receipt of the Carer’s Support Grant qualify for a GP visit card, as the grant is paid automatically to persons on Carer’s Allowance or Carer’s Benefit and that carers may in some instances qualify for the Household Benefits Package and/or the Free Travel Scheme;

- that work is ongoing within the Department of Health to develop a system for the financing and regulation of home support services, in addition to the introduction of a reformed model of service delivery that will ensure the provision of home support in a transparent, equitable manner based on standard assessment of care needs;

calls on the Government to:

- immediately implement the review of the National Carer’s Strategy to include a review of the thresholds for receipt of Carer’s Allowance;

- accelerate the work on the Programme for Government commitment to extend free GP care to carers in receipt of the Carer’s Support Grant being delivered by the Department of Health in conjunction with the Department of Social Protection;

- report on the Commission on Pensions review of a pathway whereby lifelong carers are provided with practical recognition in the form of a pension for those whose caring role has denied them access to the workplace and thereby denied them the ability to build their entitlement for a pension;

- publish the pathway to ensure full implementation of the Enhanced Community Care Programme intended to expand primary care capacity and improve access to therapy services such as speech and language therapy, occupational therapy, psychology and physiotherapy, acknowledging that an additional €150m has been committed to its implementation;

- accelerate the implementation of the not yet commenced sections of the Assisted Decision Making (Capacity) Act 2015;

- provide training courses for home carers to help in areas such as health care, lifting, mobility, etc. which would be beneficial to both patients and carers; and

- provide enhanced respite care services to include emergency provisions to accommodate instances where carers may themselves be hospitalised or need emergency respite services for their loved one in the event of an unforeseen circumstance arising.

I wish to share time with Senators Martin Conway and Paddy Burke.

I thank the Minster of State, Deputy Feighan, for taking this motion. I thank my Fine Gael colleagues who are united in support of carers, particularly Senator Kyne, who co-authored the motion, and Senator Conway, for yielding his spokesperson entitlements to me to allow me to propose the motion. I am very grateful to our Seanad team.

Throughout our country every day, family members care for their loved ones in the most dedicated and selfless of ways. Some do so while also working full and part-time jobs, and they do so with or without financial compensation. The figures published by Family Carers Ireland state that more than 500,000 people provide family care in Ireland, comprising 19 million hours per week of unpaid care hours and saving the State €20 billion per year. There is no single profile of a carer nor a recipient of care - they are young and old, parents, siblings, partners, children caring for parents and parents caring for children. The needs being cared for comprise a broad church, from special needs and disability all the way through to caring for the necessities and reduced capacities that come with old age.

I have been very deliberate in my language. While I accept Senator Higgins corrects me in one of her amendments, most probably rightly so, I believe it is important that we keep front and centre that the recipients of care are people who are loved and cherished by their carers. There is no “othering” about this. It could be any of us, and quite possibly the numbers include Members of this House who are providing care. One day, any one of us could be someone in need of care.

Our motion is about ensuring that carers are supported and that those in need of care are provided with every assistance required to enhance their quality of life. It is about hastening the programme for Government commitments to support care at home, in our community and in residential settings. We are recognising and prioritising the need to formalise and the value of formalising care outside of residential and hospital settings.

A number of Fine Gael Oireachtas Members met with Family Carers Ireland in recent months. In that discussion, it was striking that family carers can often feel invisible and that their experience is that of living through the experiences of the person they care for. "No one asks me how I am" was a point made by one contributor to the discussion in question. It is time they were made visible and that they were thanked in the most practical and pragmatic of ways, that the financial security supports are implemented to the full, and that the practical supports are provided for as locally as possible to the carers and those for whom they care.

I have seven asks in the motion and none are outside of what is already committed to in the programme for Government. It is really a call that we hasten this into being. It is vital that the review of the national carer’s strategy should take place as quickly as possible. We need to take full cognisance of all that has been achieved and of the work yet to be done. The updated strategy is vital and work on this must commence immediately. The threshold of carer's allowance entitlement must be reviewed. Appropriate and adequate pension provision must be made for carers, recognising the value to the State of their role and ensuring they are compensated where they have been unable to work and build up pension entitlements for themselves due to their caring commitments. We need to accelerate the work on the programme for Government commitments in respect of carers by the Department of Health, in conjunction with the Department of Social Protection. We are calling for the publication of a pathway to ensure full implementation of the enhanced community care programme. This is an excellent programme, intended to expand primary care capacity and improve access to therapy services, such as speech and language therapy, occupational therapy, psychology and physiotherapy. I welcome and value that the Government has put in place an additional €150 million for its implementation.

It is very good news that the carer needs assessment is being rolled out currently in Galway, Mayo and Roscommon. This programme will determine family carer needs more clearly and link carers with their relevant services and supports. I hope this will be a great success and will be replicated all over the country as quickly as possible.

I acknowledge that, in the last two weeks, the heads of Bill for the publicly funded home support providers legislation has been published, which will extend the fair deal scheme outside of care facilities. The programme for Government promises a carers guarantee so the full panoply of supports for carers can be provided, regardless of where they live. When can we expect movement on this? We need a timeline and one that is compact, reflecting that, throughout Covid, carers, as an extraordinary group, have especially carried an enormous burden for our State, and have done so valiantly, bravely and quite alone at times in the last year.

There is a commitment to establish a commission on care.

The commission needs to be cognisant of and recognise the future role of the decision support service when it is fully established so that vulnerable people in need of care are assisted in making decisions about their future and have a say in what their needs are. This is bound up in the commencement of the remaining sections of the Assisted Decision-Making (Capacity) Act. Although these provisions are scheduled to be on course for June 2022, I believe there is even a delay in that timeframe. We need it as soon as possible. People are becoming wards of court almost on a daily basis. It is important that we accelerate this so that those in need of care are in charge of their decision making and the personal assistance that should arise and flow from the provisions is put in place as quickly as possible.

For all of this to be a success we need to provide training courses for home carers. They need help in areas such as healthcare, lifting and mobility, all of which would be beneficial to those being cared for and carers themselves in support of self-care.

There is a desperate need for respite care. I know of a situation at the moment where a mother cares for her daughter. The mother needs reconstructive surgery and has recently had to cancel it because she cannot secure respite care. We need to provide enhanced respite care services and include emergency provisions to accommodate instances where carers like the lady I mentioned may need to be hospitalised or where an emergency arises and carers need emergency respite services for loved ones in the event of unforeseen circumstances.

I acknowledge that the past five years have seen a 50% increase in expenditure on supports and there have been unprecedented increases this year as well. However, this funding needs to continue and be accelerated. A just society values care, a community that cares and a state that values carers. It is time for this just society to be fully implemented for family carers and their loved ones. I commend the motion to the House.

I second the motion as clearly laid out by my colleague, Senator Seery Kearney. For too long carers were completely undervalued in this society. I believe it is changing. I believe the mindset regarding carers and the great role they play in our society is changing. This was very much formalised in the clear, precise and concise commitments made in the programme for Government last year.

We are approaching the first anniversary of the formation of this Government. This gives us an opportunity to reflect on what has been achieved and what has not been achieved. I completely understand that the health service is still firefighting and dealing with emergency planning and decisions because of the Covid-19 pandemic. We are seeing people being vaccinated. Slowly but surely our society and country are beginning to return to normal. One aspect has had to return to normal quicker than anything else. This is the need to ensure proper care processes are put in place and to ensure the people who are delivering the care are properly treated.

I was elected to this House first in 2011. I remember the arguments and debates that took place from then to 2014 about carers and trying to get caring hours and funding to support carers in the home. It was like pulling teeth. It has improved. There is no doubt but that it has improved in recent years. We have the local authority scheme providing housing aid for older people and we have the housing adaptation grant. Millions of euro is being spent in every county to upgrade the homes of people so that they can be cared for in the home.

The Minister knows - we all know - that it is far more cost effective to the State if people are cared for at home and if the structures and infrastructure are in place in homes to care for people there. Having said that, far more has to be done. We need to see the commission on caring established. We need to implement the various recommendations that have been made over the years.

We need to place carers at the centre of our thinking and our structure and, as Senator Seery Kearney said, we need proper joined-up thinking between the HSE and the Departments of Health and Social Protection because we need to pay the carers and provide the hours. The caring legislation that has been published to extend the fair deal scheme to people in their homes is critical. The fact that the heads of the Bill have been published is a positive step in the right direction, but we need to see that escalated through these Houses as a matter of urgency. The fair deal scheme is not flawless but is certainly fair and has worked in supporting people who require nursing home care. However, we need to extend the scheme so people have a proper choice as to whether they want to care for their loved ones at home and so the proper financial structure is in place to do that. Respite care, as Senator Seery Kearney pointed out, is critical. People cannot care 24-7, 365 days a year, and the present respite care structure is not good enough.

We need to invest in caring for our carers. This motion is excellent. It is enlightening a debate that has been taking place for a long time within our party and within this House. The House can lead the way in caring for carers.

Senator Burke, you have just short of four minutes now.

I welcome the opportunity to say a few words about the motion. I welcome the Minister of State, Deputy Feighan, to the House and wish him well. I do not think I have spoken in the House when he has been here. We served together in this House for a good number of years. I compliment Senator Seery Kearney on tabling the motion. It is a great motion. There is very little in it against which someone could argue. It is a very timely motion. As Senator Conway said, changes have taken place over recent years.

We cannot be thankful enough for the work carers do. They do enormous work. I can speak of this first-hand because my mother, who will celebrate her 94th birthday tomorrow, has availed of the caring services for a good number of years, and the fantastic care they give is unbelievable. Carers should have been one of the groups vaccinated first. They move from house to house, in recent times at great personal cost to themselves. In some cases they have contracted Covid and have been liable to take it with them to other houses. There are two aspects to this. There are the HSE carers. In my mother's case they are Sarah Staunton and Kathleen Vahey. Then there is a company, a franchise, run by Home Instead Senior Care, which in Mayo is run by Oonagh Cox. She has quite a considerable number of staff. Martina Brennan, Cathy Heneghan and Stephanie Flannery are carers who call to my mother. I can see first-hand the work they do. It is not just the work they do in terms of caring and the needs of the patient; they also all have a great word to say to the people for whom they are caring, even if it is only the news, turning on the television or meeting them for half an hour during the day. All this is very welcome for the person being cared for, who may not see another person again for a number of days or until the next carer or that particular carer calls around again.

Senator Seery Kearney is quite correct: there is a great need for respite care. There is also a great need for training courses to help carers to use lifting equipment. This is very important, whether it is the chair or the lift in a toilet or shower. All these issues are very important, and this is an area I hope the Minister of State will take on board. It needs the earliest possible intervention.

I welcome the pilot scheme for carers' needs that is being rolled out in Mayo, Galway and Roscommon. I hope this scheme will be rolled out through the country in the not too distant future. I welcome the motion. It is a great motion. A lot is being done and great credit is due to the Government and to all the people and staff involved. There are great changes. The people who avail of care taking place at home are much happier than in nursing homes or in hospitals.

I thank Senator Burke. Before I call the next Senator I formally welcome the Minister of State, Deputy Frankie Feighan, to the House. The Minister of State is very welcome back to the Seanad, albeit sitting in the Dáil Chamber.

Cuirim fáilte roimh an Aire Stáit. I welcome and support the motion. I am sure that other Senators saw the RTÉ programme last night called "DIY SOS", which was about a beautiful family with two sons who have Pfeiffer Syndrome. This is an extremely rare genetic disorder. I was struck by a comment the couple made about their own relationship. They said that due to the stress of caring for their sons on a 24-7 basis, and the need to keep their eyes and ears on their sons all of the time, they do not really have a relationship anymore. They are just two carers who happen to live under the one roof. It was a very sad and poignant observation. It probably saddened many people who were watching. Notwithstanding the sheer and obvious love the couple had for their children, the strain on their lives and on their relationship was clear. It is the reality of daily life for tens of thousands of people across the country. Caring full time for a loved one or loved ones is not a part-time job. It is a full-time, all-consuming and constantly changing duty. It has to take precedence to the exclusion of all other things, most often.

Half a million Irish people are involved in caring at some level and more than half of carers have given up work to care for someone. There are 67,000 carers under the age of 17. This is not far off the population of Galway city. Young people have come in for a certain amount of criticism recently in the context of the lockdown, often from Ministers and from NPHET. Imagine what the existence of those 67,000 young people has been like over the past year.

In 2018 I wrote a report for the Parliamentary Assembly of the Council of Europe on the provision of palliative care. In the course of my research I learned that 100 million people in the European Union are involved in some way in caring for another person with a chronic illness or disability. Consider what this number will grow to in the decades to come as the EU population ages.

In many ways carers are a forgotten class of people. They are easily overlooked because they have no great union clout or political power. They simply do not have the time or energy for political or media agitation on their own behalf. This is why it is important that we as politicians stand with them and stand up for them. It is not just about the amount of money that family carers save the State. We should say this and be conscious that money is not the most important thing. It is just one reason why the State owes them a tremendous debt.

I will turn now to the vaccine roll-out. Last year we had a situation where people who are homecare givers were going from one house to another house. These carers are very often people who are on a low income or living in constrained or congregated domestic circumstances. I called for a greater effort to be made to provide accommodation alternatives for people in that situation. In the same way, the handling of the vaccine roll-out for carers left a lot to be desired. I do not understand why more effort was not made to prioritise carers at an earlier stage, even with a crude measure such as starting with people who are in receipt of the carer's allowance. This would have captured the lion's share of such people. A large number of family carers have not had their first doses yet, even though the elderly loved one they care for may have been fully vaccinated some time ago. Carers who work for the HSE or one of the private care companies were included at an early stage of the vaccine roll-out, but family carers were not counted since they were not considered to be front-line workers. On a cold and scientific basis this might have been seen as justifiable, but on a human level it was questionable. Family carers were considered to pose less of a risk of transmission than care hired into the home. The reality is that family carers have, by necessity, spent the past months and years of their lives greatly confined alongside the person they care for, because of the needs of the person they care for.

The Taoiseach got his first vaccination yesterday, to much fanfare, and we all applaud and welcome that moment. I know of many family carers, however, who are older than the Taoiseach who still have not been given their appointment.

Regarding the future, there are many small things that could be done which would make tangible differences to carers' lives. A small number of carers fall into a pension gap because they have not spent enough time in the workforce to qualify for a contributory pension and do not meet the means test for the non-contributory pension. The programme for Government includes a commitment to address this issue and I hope there will be progress on that. Family Carers Ireland has called for a formal register of carers, which seems a very sensible idea because it would allow people who potentially fall into traps like this to be identified in advance. If such a register existed it might also have allowed the vaccine to be rolled out to carers in a more compassionate way. As I was writing the report into palliative care, I noted that the issue is not just about people's financial needs. We can never lose sight of the psychological, social, emotional and spiritual side.

In the context of the care given to my late father, we were hugely grateful for the State supports available to us as a family prior to the Covid pandemic and, indeed, for the responsiveness to my father's ever-changing needs. Much of what is going on is good. I very much agree with what the motion is saying in that respect, but I am often struck by the geographical inequalities. The level of care sometimes comes down to the particular area where a person lives and that is a problem. That needs to be evened out.

The care given can also vary according to people's conditions. People with more physical needs do not get the same level of care support as, perhaps, people with other conditions, which worries me. I mentioned that care can be a constantly changing and evolving situation. There is also the situation of people who give care at home and those who come in to give care; all their work needs to be supported.

I would like to see the quality of care evened out on geographical lines and with regard to conditions. I talked recently to carers of people with Prader-Willi syndrome who do tremendous work under enormous pressure in caring for their loved ones in a family situation. They need so much more in terms of respite and other supports.

Many colleagues want to contribute and we are under time pressure. Members will be glad to hear I will keep my contribution very brief and will definitely not run over time. I very much welcome today's discussion and I commend Senator Seery Kearney on laying this motion before the House. I am glad we have the opportunity to discuss carers and the vital role they play.

The pandemic has brought the issue of care and the value we place, as a society, on caring for members of it who are old, sick, young or who have special needs. There are more than 500,000 family carers in Ireland today, more than 60% of whom are female. They save the State more than €20 billion a year. Care should be central to how we plan our society but, unfortunately, it is often an afterthought. The pandemic was very hard on everybody, but family carers have been left particularly under pressure with the closure of day services and other supports. They are exhausted, burned out and facing huge stress right now.

The recent Citizens' Assembly on gender equality specifically focused on the role of care in Irish society and recommended that the article on the woman's place in the home in the Constitution be deleted and replaced with a broader obligation on the State to take reasonable measures to support care within the home and wider community. It is only right and proper that we are now discussing the support that should be given to support care and the people who care within the home and within our communities.

Carers do what they do because they love the person they are caring for. However, this does not mean they should provide care without proper financial and other supports. Carers are left in a very vulnerable position due to lack of financial supports, pension entitlements and the proper training needed to do their essential jobs. People who have been caring for more than 20 years should be given a lifetime carer's pension due to their inability to otherwise source pension provision, which was the point referenced by Senator Mullen. As the majority of carers are women, they are the people falling into this pension trap. It is one of a number of pension barriers women in society face.

We should treat carers with dignity and respect. Making proper provision for them now and into the future is how we show dignity and respect to the people doing such an essential service.

We should not be giving them empty platitudes. I am very conscious when we are discussing this issue that we praise the role carers perform but that we also acknowledge such praise is just not enough. We need to follow it up. I am looking forward to hearing what the Minister of State has to say about the financial supports that we should be giving carers and I look forward to hearing the contributions of all of my colleagues. This is an essential conversation that we must have. We are moving towards a position where we will have a referendum on the woman's place in the home being removed from the Constitution and a broader caring article put in. We need to first have a conversation as to what society we want to build post-pandemic, considering that we will have that constitutional referendum.

I welcome the Minister of State to the House. It is always a pleasure to see him back here with us. I commend Senators Seery Kearney, Conway and their colleagues on putting down this important motion and I am delighted to lead the Labour Party response to it. In advance, I wish to second the amendments being proposed by Senator Black. She is due to speak on and will be proposing these. They are very much complementary to the motion itself, add to and enhance many of the aspects of it, and I will speak to those.

This is a very timely motion. Throughout the last year and more, as we have been going through the Covid-19 period with people suffering so much in this country and internationally, we have come to greatly value the role of carers. This period has thrown the often very difficult work carers do into sharp focus. We all realise how much more we should be acknowledging and valuing the work of carers as a society.

Others have pointed out that the Citizens’ Assembly has given us a way forward to provide greater recognition for carers within our Constitution, which is very important. The Labour Party group and others have additional motions on the Order Paper. We all acknowledge the work of groups like Family Carers Ireland and the Care Alliance. This motion is very welcome and it recognises the vast number of carers. According to Family Carers Ireland, there are 500,000 family carers in Ireland who are estimated to save the State a very significant amount of money, who provide approximately 19 million hours of unpaid work per week, and many of whom juggle other forms of paid work and care.

In an excellent article in Saturday’s The Irish Times, Patrick Freyne spoke about the role of a carer from his own personal experience, and asked if we could care less about people who care. He also identified a nexus of misogyny, classism and often racism that allows society to see this work in some ways as downgraded or less significant. All of this recognition is very important and it all feeds into this motion.

One of the key difficulties currently with our model for care work is that it is over-reliant on institutional care. We have a funding model in this State that favours institutional care, not just for older people but for persons with disabilities also, as those of us who are on the Joint Committee on Disability Matters are well aware of. This is also the case with the care of children and those with special or particular needs. Our care model is far too piecemeal and is not sufficiently well-structured to meet the real needs of people. A 2019 discussion document from Sage Advocacy, for example, on funding long-term support in care showed a clear preference from among the public and carers themselves to enhance supports for home care rather than having such a strong reliance on institutional care.

For me, and for the Labour Party, this comes most clearly into focus with the fair deal scheme which provides persons in nursing homes with an entitlement to State financial support. We are calling for a new fair deal scheme, one that provides the sort of statutory basis for home care that is so sorely needed. This came again into particular focus for me recently on a walk in a local park where I met a woman of my age who was with her mother who was in her 90s, still lives at home and is supported by round-the-clock care, which is paid for privately by the family siblings.

In such situations, the most favourable financial option for families in many cases is to use the fair deal and nursing home care, but we should be moving to decongregated settings and de-institutionalising. There is some recognition of this in the motion. Senator Seery Kearney spoke about the need to ensure that a system is developed for the financing and regulation of home support services. Absolutely, but let us go further and be more radical. Let us create a fair deal that enhances and supports people to be cared for in their homes into their old age. During the pandemic we have seen how important it is that people be supported to stay in their homes, where possible. That should be our default option. Instead of continuing funding models that favour institutions, we should be looking for home care.

This is not just a matter involving older persons. Last week, the Ombudsman published the report, Wasted Lives: Time for a better future for younger people in nursing homes. It contained the stark finding that approximately 1,300 people under 65 years of age are currently living in nursing homes when, in fact, other settings, preferably decongregated settings or community or home settings, would be far more appropriate. There were some very harrowing personal stories from individuals who clearly should not have remained in nursing homes for lengths of time and, in some cases, for years. They would have been patently much better off and more appropriately located in their own homes with supports provided. We are proposing a change to the fair deal scheme to enable people to draw down funds to pay for at-home care and supports as an alternative to care in a nursing home, where that is more appropriate. In particular, for younger persons in nursing homes, we propose that the State should move swiftly to ensure the more than 1,000 younger people who are in those settings inappropriately be provided with alternative supports and mechanisms.

We look forward to continued debate on this issue. There are reforms under way and we welcome them. I support the motion and the amendment proposed by Senator Black.

Before we proceed, a Senator cannot second amendments in advance of them being moved, but I note the Senator's indication.

If Senator Black is agreeable, I will move the amendment and she can second it with the agreement of the House.

Okay. The Senator can move the first amendment.

I move amendment No. 1:

In the second paragraph under "calls on the Government to:" after "Department of Social Protection;" to insert "similarly, to demonstrate legislative progress on delivery of the programme for Government commitment to a statutory home care scheme;".

I thank Senator Seery Kearney and the Fine Gael group for bringing this motion forward. It is timely and important following the Covid-19 pandemic. On many occasions I have found myself saying in the House that Covid-19 has had a huge impact on a particular section of society. It is absolutely true that it has deeply impacted those on the margins of society in ways we will be addressing for some time to come.

However, when it comes to those who are cared-for as mentioned in this motion, such as older persons, vulnerable adults and children with additional needs, this is where we see the true extent of the impact of Covid-19. Not only are those who have been at home, at high risk of infection and in need of social contact the most vulnerable to the effects of the pandemic, they are also those who rely on the hospital and primary healthcare system, front-line healthcare workers and home carers more than any other section of society. Undoubtedly, this sector and these workers have felt the pinch dealing on all fronts with the health of the nation over the last year. That is also the case for all those who have relied on these services, the cared-for and the carers. In many cases, these categories of people overlap. Sometimes the cared-for are the carers and sometimes the carers are the cared-for at different stages in life, as the Senator alluded to. The time to implement all the content on healthcare in the programme for Government is here.

One of the most commendable things about this year's Citizens' Assembly on gender equality was that it spent much of its time on the place of caring in Irish society. It is no wonder, because women carry out the majority of care work. There is space for more men to engage in it. I have always said that if one gives full respect to caring work and gives it a high status in Irish society, it is only then that one will see more men in the sector. A recommendation to recognise care in the home and community, and to support it financially, and to replace but not remove a recognition of care work in the Constitution was a revolutionary outcome of the Citizens' Assembly.

It is an element I had fought for for years along with many others. The fact it was carried out during the pandemic probably had a real impact on that Citizens' Assembly. Similarly revolutionary was the work the assembly did when it went beyond recognising carers to recognise those who are also contributors to society, namely, those who are cared for. We need to provide housing and jobs for every person and to ensure everyone can contribute in ways that suit their unique abilities. That is a truly healthy and caring society.

The Citizens' Assembly said: "Ensure choice in care and independence for older persons and persons with disabilities." What does "choice" mean in this context? It means transport that can be used by everyone, universal design in buildings, supporting independent living financially and otherwise and the full range of educational and job opportunities. When it comes to care, it is clear that those who do some of the most invisible and important work in our society struggle to make ends meet. The report published last year, in the midst of the pandemic, by Family Carers Ireland, showed 21% of carers had cut back on essentials such as groceries and heat to make ends meet. The Government is tackling this but it must do more. Investing in warmer homes so the most vulnerable in society are protected against energy poverty is a key commitment of the Green Party. We need to scale up apprenticeships, reinvest in construction and ensure no one has to live in a cold home in this State. That is just one element.

Apart from that, on an ongoing basis, there are key opportunities to ensure the half a million carers and their families are supported. The State this year is investing in financial family supports but only 44,000 people receive the full allocation of carer's allowance. An income of less than €37,000 per year before tax is required to hit the target for carer's allowance. We have to address income disregard, which has not changed since 2008. It must be decreased and the carer's allowance must be increased. There are many commitments in the programme for Government and I believe they can make a big difference to the lives of carers. Some are being advanced, such as record funding for special needs education, but we need to see faster action on other areas, such as the roll-out of GP visit cards. What flows from all this and where gender comes back to play its part is that carers are not entitled, as of right, to a pension. I hope, as a member of a Government party, that the commission on pensions will report soon and we will see action on that.

As with many things in this country, there is also a postcode lottery, which Senator Mullen spoke about, when it comes to supports. The carers guarantee in the programme for Government should address this. This was also proposed by Family Carers Ireland in 2019 to see a stepping-up of respite care.

The kind of society we must look at is one which does not talk about paid work as the only kind of work. It is one where everyone is valued for the contribution they make. Sometimes it saves the State money; sometimes it makes the State money. All the things in the programme for Government are positive and welcome but we need to step up and roll everything out.

I second the amendment. I will speak to the motion and all of the proposed amendments. I welcome the Minister of State to the House. It is great to see him here. I commend Senator Seery Kearney on this great motion. It is really good and we have put some amendments into it to make it stronger.

I am here on behalf of the Civil Engagement Group. We welcome the motion and its recognition of the important role home carers play and will continue to play in our society.

Given the resounding message from the recent Citizens' Assembly, it is timely the State should recognise and support care at home and in the community as part of our Constitution. This work is important to me in my experience as a therapist at the RISE Foundation. In many ways, carers are the backbone of society, following a vocation to lead others into health and well-being. We need to honour and support their patience, dedication and hard work insofar as we can.

The motion suggests some very positive steps towards giving carers better access to the resources required to support the choices and needs of their family members and other loved ones. It includes a call to accelerate some of the programme for Government's commitments in this field. However, we believe that stronger emphasis of one of the most important of those commitments is needed, namely, a statutory home care scheme, which is something for which Senator Higgins has campaigned for more than a decade and something that all of us in the Civil Engagement Group are passionate about. That is why we have proposed amendment No. 1 calling for accelerated action on the delivery of a statutory entitlement to home care.

There needs to be better regulation of home care and residential care. That is why we are proposing amendment No. 2. It would be a meaningful step in Ireland's journey towards becoming a society that supports and cares for all its members, including those who care for others. It is also important to acknowledge that, in many countries that have already delivered statutory home care, the conversation is moving forward with an increasing focus on the right to personal assistance so that individuals are not just cared for but supported in fully participating in society. I will be moving amendment No. 6 to point an arrow towards the next steps for Ireland in learning from international best practice and supporting all of its citizens by producing a report on a right to personal assistance.

I will move our amendment No. 4 to emphasise the importance of reviewing and reflecting on care policies in light of Ireland's recent ratification of the UN Convention on the Rights of Persons with Disabilities, the CRPD. The convention provides us with a powerful roadmap for stronger and more inclusive communities and is something many of the motion's proposers care about.

It is encouraging to see that the physical and mental health needs of those who care for others are given emphasis in this motion. Any commitment to developing the protections of health, particularly mental health, is deeply appreciated and necessary. We in the Civil Engagement Group fully support the motion's proposals to extend free GP care and create a pathway to pensions for carers, demonstrating an approach that recognises the full humanity of carers and the breadth of work they do. In this spirit, the Civil Engagement Group has proposed some amendments to the motion that will strengthen that approach further. I will move amendments Nos. 3, 7 and 8, which highlight ways in which the motion can carry forward this holistic approach to supporting carers and recipients of care in all places where care is provided, from the family home to professionally run services, and supporting each person in making the care choice that works best for him or her.

We welcome the motion because it is a positive message about Ireland's ongoing journey towards becoming a society that supports and cares for all its members, including those who care for others. As an important side note, I am pleased to see the return of the Adult Safeguarding Bill 2017 to the Order Paper. I outlined in my introduction how the motion was timely. The current health crisis has exposed serious gaps, not only in the health sector but in areas of care for people at risk. Adult safeguarding is an area I am passionate about and I look forward to spending time developing and strengthening it within government.

I thank the Senator for covering a great deal of ground in five minutes rather than six.

I will share three minutes of my time with Senator Joe O'Reilly.

I thank Senator Seery Kearney for doing the majority of the work on this motion, which is in the name of the Fine Gael group.

I also welcome the Minister of State, Deputy Feighan, to the House. Carers are mothers, fathers, daughters, sons, siblings, family members, relatives, neighbours and friends. They can be stressed, tired and frustrated with what is a job on the one hand and a devotion on the other. It is their life. It is all-consuming in many ways when one's job is to care for somebody who requires a huge amount of care. We all like to think that as our loved ones slowly get older and become more infirm we will be able to put in place a plan for their care. However, a person can at any time be struck down with a stroke or debilitating illness that requires immediate intervention, as happened just before St. Patrick's Day last year in the case of my uncle Tim, aged 88, who suffered a significant bleed on the brain and has been in hospital since then. These are occurrences require decisions to be made thereafter.

This motion encompasses much of what has been going on and the actions that are necessary. Senator Bacik spoke about the fair deal scheme. While it is a blessing in one way, it can, and should be, improved on in terms of the provision of the same financial resources for those who can care for people in their own homes with supports. I might have said the following in the past but there are some families, like mine, where there are seven children. When my father became totally dependent on us for care, we were able to do that because there were so many of us, plus my mother, my sister-in-law who is a nurse and other in-laws. All of us were able to rally around, do shifts and so on. There are other families where there may be only one child or two children, one of whom may be away working or living in Dublin while his or her parents are living in Connemara or Mayo. This leads to people feeling immensely guilty because they cannot be there all of the time. There is no perfect answer to this problem. What is perfect for me might not necessarily be perfect for somebody else. Some people require full-time care because they are not able to be cared for at home or they do not have the required level of supports available to them.

This motion is important in that it deals with an area that is going to become more important in the years ahead.

I join with Senator Kyne in acknowledging the special input of our good friend and colleague, Senator Seery Kearney, in terms of this motion. It is very well crafted. I also welcome the Minister of State, Deputy Feighan, to the House. I have known him for many years and I know he is a man of great personal compassion and that, hopefully, will transfer into his response to this motion in terms of follow-up actions.

In whatever fora or public assembly I have had the privilege of being a member of, I have always argued that in their old age or through levels of disability people generally want to remain in their own homes and their own communities. That is generally the case. I have always argued that because that is their wish, it should be adhered to. I have also argued on a more clinical level that it is a no-brainer - to use that awful populist term - in terms of expenditure because the cost of institutional care greatly exceeds the cost of supporting people at home. That is the bizarre part that is indefensible. For that reason, real action is needed in this area.

I have also argued down through the years in whatever assembly I had the privilege of being - this was more pertinent in the past, but sadly it might become pertinent again, even if only on a temporary basis - that the role of the carer of people in the home was a tremendous asset to reducing unemployment. There are a number of people who would love to leave particular jobs to care for loved ones if they had the support, financially and otherwise, to do it.

It was a real cure for unemployment as well.

In terms of actions, although carer's rates are attractive, they need to go up year on year. There needs to be a clear increase and a Government commitment to that increase year on year. Home care packages need much more investment and need to be readily available. As good as nursing home care is, it is ludicrous that home care is not put on a statutory footing. I know there is a commitment to do it but we need home care to be put on a statutory footing as of right so that somebody like Senator Kyne's uncle, about whom he spoke, would automatically qualify for a home care package if he was able to come home. Retirement villages and extra homes in estates for older people are also necessary. Fundamentally, we need a holistic recognition of the importance of carers and supports for them that will make it attractive and recognise the really important role they play.

I very much welcome this Private Members' motion and I commend Senator Seery Kearney for bringing it forward. It is so important that we recognise the importance of carers in our communities. I know so many people who care for loved ones. It can be so rewarding and it can also be so incredibly difficult and isolating for so many. Family carers are the backbone of care provision in Ireland and they deserve the support and recognition we are giving them today but as we all agree, they need more than recognition and platitudes. Family carers are the sole support for their loved ones who need care, especially in the last year. We must look at what last year and this pandemic must have done to family carers and the worry, fear and incredible weight put on their shoulders - the fear of bringing Covid into a home. It must have been incredible. I know a bit from caring for a family member at home - not to the full extent of being a carer but it is so worrying.

I very much welcome and support the recommendation of the recent Citizens' Assembly to change the text of Article 41.2 of the Constitution to language that is not gender-specific and obliges the State to take reasonable measures to support care within the home and wider community. This is part of the change that is needed to properly value care in this country. The majority of carers are female and it is an example of how the value of female caring work has often been taken for granted and very much unappreciated.

As I said, everything stopped last year. The normal day centres and activities individuals would have been so used to stopped overnight and are still not back to normal. If I had one extra ask, it would be for these vital community day care centres for our older people and younger people to be brought back as a matter of urgency. A lot of people are vaccinated and this vaccine bonus must be brought to our day care centres to allow our citizens to live properly again.

Fianna Fáil has always been committed to looking after carers. During our previous terms in office, we have significantly improved supports for carers and I hope this Government will be no different. This Government is also committed to the review of the national carer's strategy. I support the call to include a review of the thresholds for receipt of carer's allowance. Caring is a 24-7 responsibility and I feel that the thresholds should be increased or indeed that a baseline payment for all carers should be considered.

We know that family carers often do not get the appropriate support and through not giving them the necessary support, we often put their health in jeopardy. We need to look after our carers so it goes without saying that I fully support the programme for Government’s commitment to extend free GP care to carers in receipt of the carer’s support grant. The commitment cannot come quickly enough for these carers. There are many other supports that can be provided, such as increased opportunities for education and training. Training will help carers to care for themselves and their loved ones better.

We can do this by delving deeper and asking carers what they need in their homes - what specific interventions would make their lives better to enable them to look after their loved ones and themselves.

I support the carer's support grant, which was increased in budget 2021 from €1,700 to €1,850. It is estimated more than 100,000 carers have benefited from it. That is the first increase in that grant since 2016.

Family members often give up their careers to help loved ones. This sacrifice inhibits people from building up a pension, which was mentioned earlier. Most carers are female and that caring role forces women into a pension poverty trap. I welcome that the Government has pledged to develop a pension solution for family carers and that it recognises this work. We must facilitate life-long carers to have financial security in their future. Just because people commit to being a carer does not mean they should be excluded from building up a pension. I ask the Government to make good on that pledge.

I support the calls with respect to the Assisted Decision Making (Capacity) Act. We must accelerate the implementation of the commenced sections. We must facilitate our citizens to make their own decisions. They might need extra assistance to do that. We should not allow a disability, an accident, a medical procedure or a chronic illness prohibit them from making those decisions. It is very important they make their own decisions and that we respect their individual rights. I would appreciate if this would be acted on with a matter of urgency.

I commend the motion. I support it. We must recognise the value of carers and the care work individuals all over the country undertake every day and every night. They love what they do but that love should not be taken advantage of by the State.

The Minister of State is welcome to the House. This is my first time to address him in this House since his elevation. I congratulate him on that. There is no better man for the job, and I can honestly say that.

I thank Senator Seery Kearney for bringing this motion to the House. The first part of it is extremely informative in setting out the number of people who are tied up as carers in this country. The word "carer" is such a simple little word but when one digs behind it and sees what is involved, one finds children are looking after parents today who see things they should never see from a parent. They have to look after their every need, and that is frightening. There are people looking after parents or elderly people who are suffering from the early stages of Alzheimer’s disease or dementia and, in some cases, there is violence involved in those relationships and they are extremely difficult for all involved. There are people in need of care who resist it when the carers first start to call to see them and who are determined to live independently even though they are no longer able to do that. The disruption that causes to a family is unbelievable. Ultimately, it usually is a gender based issue. One of the sisters, daughters or the mother takes responsibility for the care. It is extremely difficult.

I recall when my mother was in the later stages of living outside a nursing home, my sisters took it in turns to look after her. Every night one of them was with her. It became extremely difficult on all of their lives. My younger brother, now deceased, God rest him, decided he would give them a bit of respite and would hire nurses to look after my mother at night. In a short period of six months €50,000 was spent. That is the cost of caring and that is the cost families carry all the time. We talk about people caring 24-7 and that runs off the tongue very easily, but 24-7 is just that. Carers are getting up in the middle of the night with difficult children trying to get them back to bed. There was a documentary sometime ago that covered the care of a child who smashed up the house regularly in the middle of the night. That is caring but that is the type of caring none of us was ever meant to have to undertake.

The things that Senator Seery Kearney is looking for are simple but one of the most important is respite for the carers so that the carers can get away and have some time to themselves. You can never have enough money and the notion of bringing in a pension for carers is vitally important.

My colleagues have spoken about people who have given up careers. I hate to harp on the issue of gender but generally it is a daughter who gives up a career and comes home. Some of them might have been working in Dublin. Years ago, when we were young, a girl working in Dublin had to come back to Galway to look after her mother or father. I recall one specific instance where a carer was looking after a relative and when the relative died, she had substantial funds and did not leave one cent to the carer. She left it all to other members of the family. How do you answer that?

I appreciate what Senator Seery Kearney is trying to do here. I hope that the motion passes. I note the amendments tabled by my colleague, Senator Frances Black, and I support them in the main, but I am not sure if she will go to a vote on this. I implore the Minister of State to do anything possible for carers while we still have a few bob in the economy. It has been a tough time for the economy but remember that when lockdown is lifted, they will still be locked down long after the rest of us are free to live our normal lives again. I think of a couple who have a child who needs 24-hour care, because it destroys relationships. Many relationships break down where one partner or the other cannot live with the outcome of a catastrophic situation such as this where full-time care is needed. I will leave it at that. I thank the Minister of State for being here and listening. I thank Senator Seery Kearney for tabling the motion, which I appreciate.

I welcome Senator Maria Byrne. I am delighted to see her in the Chamber.

I thank the Acting Chairperson for the kind welcome. I compliment my colleague, Senator Seery Kearney, for tabling this motion. While I have been out of politics for the past 12 months, I have met many of my neighbours and spoken with people who have been involved in the caring profession. I pay tribute to the many people who have cared for elderly relatives and even for younger people during this pandemic. Many people may not have had to care for older relatives or more vulnerable people in the past and have gone out of their way to make sure that they are well looked after, as well as ensuring that neighbours are well looked after.

I was speaking with somebody recently who is caring for her mother who had Covid, while her other parent unfortunately died recently. Her mother is at home and unfortunately confined to bed. Caring is a 24-7 undertaking. I am aware that so much is involved in it. I would like to see more training being brought in for people who are carers in their own home. This daughter who is living with her mother has to do many things, but has received no training. This is something that the Minister of State could consider. I know that there are training courses for many of the HSE staff or staff coming from some of the private companies. Training could maybe be offered for family members who go on to become carers.

Carers give so much. We want to acknowledge carers and consider a pension for them. I am aware of some people who have given up their jobs to go home to become carers. It is a privilege and honour to look after a family member when needed. I have seen in my own area that older people might sell their homes, maybe a three, four or five-bedroom house, and downsize.

Part of the package where that happens is that a carer is involved. There is a big shortage of home care hours. It is something I have seen in the mid-west region. So many people have to fight to get an increase in hours. Many people are living on their own and there are not sufficient hours so the family might have to pay privately to bring a carer in. While that is essentially fine, private home care costs a lot of money. I would like to see a really big increase in home care hours. Carers are so beneficial to help keep people at home. For the person living at home, it gives great peace of mind and satisfaction, and helps give them a longer life because people are more comfortable in their own home. Many people have put themselves out to look after their loved ones and neighbours, from picking up their groceries and medication but also sometimes providing home care like showering. Not everyone is able for those kinds of things. We should pay a huge tribute. I am glad that the Minister of State and the Department are looking at acknowledging these people and perhaps putting a pension in place for them because in the past, when people gave up their jobs it had an impact on their contributory pension or whatever. It is good that consideration is being given to looking after carers. As people go on to live longer lives, it is important that those who look after them are acknowledged and cared for.

I welcome the opportunity to speak on today's motion. I am sure that many of the 500,000 carers in the State are watching this debate, and hoping that they finally get the recognition that they deserve because they are often left wondering who is going to care for the carers. They would often say that it does not seem to be this Government. The strain on carers and families is horrendous at the best of times but during the pandemic, it has been unbearable.

Last month in the Dáil, my colleagues Deputies Kerrane, Tully and Cullinane introduced a motion calling for improved conditions and supports for carers. It was supported by all the parties. Since then, the Government had the opportunity to clearly demonstrate that it cares for family carers but has there been any concrete action taken? Have there been any tangible steps taken to improve the lives of carers, because today we have another motion from a Government party calling for the Government to act? It is more words, and carers are growing sick and tired of meaningless words and pats on the back. Carers are doing the work that the State should be doing and they are in dire need of a break. However, carers' goodwill is often used against them and they feel that they have been taken for granted. Just last week representatives of Family Carers Ireland were in front of the Joint Committee on Employment Affairs and Social Protection and spoke about how let down they felt as a result of not being prioritised for vaccination. It is notable that Fine Gael is putting forward this motion to acknowledge and support carers but also willfully ignoring some of the things that are being asked for to help them in their caring roles at this time.

Carers have been largely ignored but their value to the State is unquestionable and we have to invest in them. Doing so is a win-win for both families and the State and takes pressure off hospitals, nursing homes and GP services. In many cases carers work 24 hours a day, seven days a week, with the majority not getting paid for half the hours they have worked. The latter equates to up to 19 million hours per week unpaid and we need to acknowledge the care they provide for the most vulnerable people in our society. It is estimated that family carers save the State approximately €20 billion a year so they deserve to see the good they do reflected by the State.

Today's motion does not prioritise carers in the vaccine roll-out and family carers are not currently scheduled to be vaccinated any sooner than the general population, even though they play a vital role as primary caregivers to people who have very vulnerable immune systems. Since the pandemic began, they have not been offered any personal protective equipment or financial support. Family carers are exhausted. They are caring for highly vulnerable people, but as they are not considered to be a group, they fall through the net. It is possible that some carers, despite the huge strain they are under, could be among the last to be vaccinated on an individual basis. Each day that carers are not vaccinated is another day that they play Russian roulette with their loved ones. The stress and consequent anxiety is having a hugely negative impact on them and their mental health.

The motion also recognises that more than 52% of the work of carers is outside the home in paid employment, in addition to their role as carer. In the budget before last the Government increased the hours that carers can work from 15 to 18.5 per week and carers were told they could work more outside the home if they wanted. However, if they earn more, there is an immediate impact and a reduction in their carer's allowance. At that stage, which was well before Covid, when more money was available, the income disregard should have been increased in line with the additional hours. It is a mistake that this was not done and it is something that I believe should be fixed.

Last month Sinn Féin Deputies Kerrane and Tully launched a charter for family carers. It was designed in consultation with the carers' representative groups. It goes beyond what is called for in today's motion. The charter details how we can deliver vital financial support by increasing the carer's allowance and carer's benefit from €219 to €255 and increasing the annual carer's support grant by €150 to €2,000. It also widens eligibility criteria so more carers can receive support instead of being shut out by income thresholds or due to being self-employed.

Crucially, the charter puts in place financial support for carers, not only during their time of caring but also in retirement by ensuring careful review of the new total contributions approach to make sure carers benefit. Importantly, it also delivers key emotional support by putting in place an emergency talk therapy fund to give essential support to family carers, as many are currently feeling burnt out due to the pressures of the pandemic. It also ensures family carers are considered a priority group for the roll-out of the Covid-19 vaccine. This is essential as many families have been effectively at home for more than a year. The implementation of Sinn Féin's carers' charter would cost a fraction of the value carers offer to the State. We must do right by carers. Let us not just recognise the work that they do as being vital but let us value them and give carers a break.

I thank Senator Seery Kearney for proposing the motion. It is incredibly important and timely given that the population is growing older, but also in terms of dealing with the pandemic and the emphasis that is placed on people caring for vulnerable family members. The findings of the Citizens' Assembly emphasised the importance of recognising carers, including within the Constitution.

Rosalynn Carter stated: "There are only four kinds of people in the world: Those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers." Obviously, there will be a cross-relationship between some of those as well. It is something that touches every single one of our lives, some more than others. While acknowledging the tremendous work of professional carers, I want to specifically emphasise the role of family carers because they are the backbone of care provision in Ireland. They deserve more support and recognition from the Government.

During previous terms in office, Fianna Fáil significantly improved supports for carers. The party introduced the carer's allowance, carer's benefit and the respite grant, which is now known as the carer's support grant.

We also introduced for the first time an entitlement allowing carers to retain a full social welfare payment and to receive in addition up to half-rate carer's allowance. In this Government, Fianna Fáil is committed to reviewing and updating the national carer's strategy and to developing a pension solution for family carers that recognises their crucial and important work. The extension of free GP care to carers in receipt of the carer's grant is another measure that we look forward to implementing. Furthermore, we have undertaken to develop a carer's guarantee proposal that will provide a core basket of services to carers across the country, regardless of where they live. This was a key plank of our general election manifesto and is now securely in the programme for Government along with our programme partners.

We are helping to progress a highly ambitious plan to greatly increase home care. Home support is vital to enable older people to remain in their own home for as long as possible and to support family carers. An additional 5 million home care hours will be provided this year. What is also being introduced is an assessment tool to ensure that the services provided are matched to the needs of every individual. I have spoken to many carers who believe this will bring much needed improvement to home care, to the people being cared for and to the lives of the carers. I hope that these policies will have a positive and transformational impact on the lives of older people and their carers. By keeping carers close to home and expanding the range of health and social care services in the community, we want to enable everyone to live longer, healthier lives. It is particularly important for older people who access these services more frequently. While we all want to grow old at home that may not always be possible and long-term residential nursing home care is also required. Globally, the impact of Covid-19 on those living in long-term residential care settings has been significant. As we reopen society, we must plan to meet those challenges into the future.

As Chair of the cross-party committee on dementia in Leinster House I wish to speak briefly about it. I have some experience in Kildare of families who have people with dementia. I have never seen such selflessness, love, care and devotion, but I have also seen significant exhaustion, stress, worry and anxiety. That must be recognised and examined. There is now a dedicated focus on dementia care in the programme for Government, including pledges to implement the national dementia care strategy, ensure that home support is adaptable and responsive to the needs of those with dementia and also the commitment to increase the number of dementia advisers. While dementia brings many challenges for people living with it and those who care for them, access to the right services and supports can help people to live well in their community. It is most important that people with dementia and those that are caring for them gain some respite by developing the Alzheimer café model. It is something that we are looking at in Kildare but, unfortunately, we do not have a permanent premises. I am in the process of looking at different venues together with the Kildare branch of the Alzheimer Society of Ireland, under the chairmanship of Marie Conlon, and with the national office. More money must be put into this area to ensure that those who have dementia and those caring for them have the opportunity to have a break and to benefit from respite.

I too welcome the Minister of State, Deputy Feighan, to the House. It is good to see him again. I thank Senator Seery Kearney and her Fine Gael colleagues for bringing this very important motion to the House today. However, it is beyond time for action to replace words. Government action is urgently needed on the motion before the House today. Last Wednesday, the Oireachtas Joint Committee on Social Protection, Community and Rural Development and the Islands, of which I am a member, received a presentation from Family Carers Ireland.

Currently, there are 500,000 carers in Ireland saving this State an estimated €20 billion each year. Over the past year or more I have followed up on refusals for carer's allowance given the high volume of first-time refusals coming through my own office. In replies to parliamentary questions tabled by the Labour Party over that time, the refusal rate is still running at almost 50%. There were just over 19,000 applications in 2019 with almost 9,000 refusals, and there were 18,700 applications in 2020 with 10,495 of those applications refused. The means test for the carer's allowance has not changed since 2008, some 13 years. The current levels are simply locking out carers throughout this country. A limit of €332 for a single person and €665 for couples is simply antiquated and is not reflective of the amount of care but, most importantly, the cost of care that so many families provide in this State at this time.

Recently, I had one case concerning a lady who was €9 above the means test limit. She had to adapt her house, improve her heating system and increase the amount of food she was purchasing to enable her to take in and look after her mother. This is, of course, before she provides 24-7 care, seven days a week, for her mother. Her husband's gross wages took her out of qualifying for a payment and, unlike even the problematic qualifying criteria surrounding medical cards, her mortgage payment, mortgage protection insurance, house insurance and childcare costs are not taken into account while her husband's travel to work costs still have to be paid as well as these other economic changes that caring for her loved one has brought, as I have already mentioned. She is not alone. The Government cannot continue to expect such families to bail out the responsibility of this State and this Government by not paying those who carry out this care.

In its presentation last week, Family Carers Ireland stated that almost 50% of those who receive the carer's allowance are not on the maximum rate of €219 per week. Unfortunately, I am aware of carers who receive just €10 per week for the 24-7 care they provide. That is simply not good enough. I am sure, like me, many other Members of this House have attended oral social welfare hearings, when we were allowed to do so in a pre-Covid Ireland, where carers were brought to tears telling the story of the medical issues that the person he or she is caring for has and how the situation affects not only that person but also everybody else in the house. In some cases your jaw would drop listening to what care was being provided and the level of medical need. It is unbelievable we put carers through this process. I am sure, again, I am not the only one in this House who has had a social welfare inspector tell me he or she had to bring the person in because that is the system and he or she had to hear that person give his or her story.

Family Carers Ireland has recently stated, like I am sure everybody in this House, that it will always support applicants and that while it is very important to discuss the application and prepare it before it is sent in, we should not be putting carers through this ordeal. They deserve our respect and, more importantly, they need to be paid. Let us start by Government increasing the means test for carers so that lady whom I have mentioned, who has been refused a third time, can receive a payment and the respite grant, or carer's support grant as it is now called.

Another area I would like to touch on and which is mentioned in the motion as one of the income supports is domiciliary care. In particular, I would like to bring up the ridiculous need for children aged 16 who are transferring from domiciliary care to disability allowance to go through the amount of paperwork needed to obtain the new payment, in this case the disability allowance. I am aware of a number of parents who, when they questioned this, were told by the Department they needed to check if there were any changes in means for the child to secure the payment. Why can the system not be streamlined and, like a renewal for a medical card, simply a one-page document be sent to the parent or guardian of the child asking if there have been any changes, to tick a box if not, to sign it and reduce this burden on those who need our help the most? There is one thing that is for sure and that is that, for the majority of these children who need a disability allowance from 16 on, their medical conditions will be with them for life and, unfortunately, that will never change. Their parents and guardians cannot understand why they are put through this process of filling in such a lengthy form, gathering further supporting medical documentation when they know their loved ones will never recover and will need considerable supports for the rest of their lives. Let us treat these children and those caring for them with the respect and dignity they deserve. Let us bring in a system that recognises the care that is already in place and will be for a lifetime and reduce the burden with the transfer of this payment.

Once again, I thank my Fine Gael colleagues and group who brought up this very important matter. Let us make the system fair for those who need care and those providing care, who by doing so save this Government €20 billion each year.

Payments that would go some way to helping so many of them with the additional time and costs that they provide for this State, at this time, must be made more easier.

I thank my colleague, Senator Seery Kearney, for the amount of work that she has put into this motion, and thank all of my Fine Gael colleagues for bringing this forward. I welcome the Minister of State to the Chamber. If it is not too remiss of me, I thank him for the work that he did last week on minimum pricing and for the lives that the country will save, on the back of that, in the next number of years.

I welcome the opportunity to speak on this motion. On Friday, I had the opportunity to meet Clare Duffy, Family Carers Ireland and a person that the Acting Chairperson knows quite well, Councillor Richie Molloy in Clonmel who does an awful lot of work for family carers. I had a very good discussion with them on the range of issues for carers that need to be priorities, albeit they recognise the progress that has been made already and the commitments that are being made in the programme for Government going forward. However, although it has been a difficult year, there is worry about the follow through on those commitments in the lifetime of this Government. If we are going to do so then there are 20 or 30 actions in the programme for Government that we have committed to, and we really need to get moving on a lot of them.

One of the issues that is a huge concern for Family Carers Ireland is the carer's guarantee. Last year, the €2 million that was committed to carers in the budget was welcomed but the problem is that the money did not go directly to family carers and went straight to the HSE service plan, which has happened in other areas of health. It has happened with mental health services over the last number of years, where money was not directly given to service providers. That is an issue because transparency is very important. In terms of family carers, there is only one group - Family Carers Ireland - but there is a range of groups involved in mental health services and they get State support. Family Carers Ireland asked for €3.2 million but, subsequently, with the onset of Covid, it needs €5 million a year. If we give the financial commitment directly to Family Carers Ireland the transparency in how it is spent is clear. If there is one issue that Family Carers Ireland would want to raise, it is that we would give it money directly so that the money is used directly and there is more transparency in how the money is spent.

A number of people have spoken about the means test for the carer's allowance. I cannot think of any other sector where means testing or thresholds have not been moved since 2008. Almost 90,000 people receive a carer's allowance. As Senator Pauline O'Reilly said in her contribution, only about 50% of them, or between 40,000 and 44,000 carers, receive the full amount of the allowance. If one has a household income of over €62,000 a year then one only gets €5 a week to be a carer. Everything in the Sláintecare plan on the future of healthcare is about encouraging home care. If one gives a household that has an income of €62,000 a year €5 a week then that is hardly a commitment that supports home care. As so many Senators have said before me, it is a no-brainer. It makes more sense financially to have people at home. They want to be at home. It is cheaper to have them at home but we must be realistic in the supports that we give. I cannot think of any other area of Government expenditure where since the crash of 2008 expenditure has decreased. In 2008, the carer's allowance was €221 per week and now it is €219. We have increased funding in so many other areas and need to look at that constructively.

We need a dedicated carer's pension for lifetime carers so for people who have been full-time carers for over 30 years. There has been really good feedback and engagement from carers and a commitment needs to be made now, which would be great from the perspective of carers.

Senator Joe O'Reilly spoke about supports for people not living in Ireland who might come home to care for someone. They might come home from the UK, Australia or Canada and want to care for a family member but the supports are not there for them. It is probably a change that we need to make in EU law rather than Irish law.

I certainly think that if the many people who moved abroad in the past ten years need to come home to care for a family member, supports need to be there for them.

In my own portfolio on enterprise and trade, our committee was discussing work permits a number of weeks ago. When we speak about that, we normally touch on people who are working as fruit pickers or elsewhere in the agricultural industry. However, I believe we can accommodate homecare workers as part of that. If we move forward with Sláintecare, we are going to have more people working from home. A recent ESRI study suggested it expects a tripling of the number of people who will need care, and that is just for older people. If we are looking to support that sector, we need to figure out how to staff it.

The real takeaways that Family Carers Ireland want are the carer’s guarantee and to make sure that if we are going to make a commitment to fund family carers, it is given to them directly. How it was done in the last budget is not funding the sector directly. If we are going to do it, we need to do it directly.

That concludes the contributions of Senators. I thank Senators for their co-operation as we are ahead of time. I call the Minister of State, Deputy Feighan, to respond.

I welcome the opportunity to address the House on the issues that concern family carers. I thank Senators Mary Seery Kearney and Martin Conway for laying this timely and welcome motion before the House.

Family carers are the backbone of care provision in our country. Whether caring for a child, a parent with a disability or illness, or an elderly family member, carers through their selfless hard work, knowledge and compassion enhance the quality of life of the most vulnerable in our society on a daily basis. Therefore, the Government is not opposing this motion.

The programme for Government aims to prioritise policy actions that protect the most vulnerable, including those in caring roles and those they care for, as our economy returns to growth in the aftermath of the pandemic. There is no doubt the burden on family carers has increased as a result of the pandemic. A survey commissioned by Family Carers Ireland in July 2020 found that one third of respondents were worried about becoming more socially isolated and 60% were concerned about a decline in their own mental health and well-being. Within this context, the programme for Government contains a firm commitment to progressing the review and update of the national carers strategy. This is a priority for the Department of Health. Obviously, the strategy update will involve several Departments, and the Department of Health will work with these Departments as the update progresses.

The programme for Government also commits to developing a carer’s guarantee proposal to ensure a minimum level of support for carers countrywide. To this end, the Government allocated €2 million in budget 2020 to improve equity of access and to support carers in 2021 in tandem with the community and voluntary sector. I take on board Senator Ahearn’s point that this did not go directly to family carers but went to the HSE service plan. That is perhaps something we can look at, and I thank the Senator for raising it.

In addition, a carer’s needs assessment will be piloted in community healthcare organisations this year, which will increase our knowledge of carers' needs. Senator Boylan said that we need to prioritise carers in the vaccine roll-out, which has been an issue. We have all made representations on behalf of carers but it was up to NPHET and NIAC to take those decisions. Hopefully, with the roll-out of the vaccines coming pretty quickly, we will deal with that situation. I appreciate what the Senator has said. Having a better awareness and understanding of the needs of family carers is crucial to ensuring we develop appropriate services to support carers both within and outside their caring role. The Department of Health and other Departments actively engage with carers representative groups and with family carers through the annual carers forum organised by the Department of Social Protection. I know they greatly value the opportunity to interact with family carers and hear their experiences and concerns.

Senator Mark Wall and others spoke about the €20 billion that is saved through the work of the 500,000 carers. It is a huge amount of money that is saved by the State and is something we need to recognise. In recent years, the Government has sought to increase the income supports available to family carers. Senator Mullen also referred to the funding saved by the State. Senator Clifford-Lee said that praise was not enough and that we need to put our money where our mouth is. She also said that this has impacted lives. Senators McGreehan and Craughwell spoke about female carers – mothers, sisters and daughters - as well as the funding that has been saved. It was said that we need to consider the community day care centres which need to be reopened after the pandemic.

Another issue that has come to the fore is the position of carers who came back over the years from places such as the UK, Australia and the United States. These were mostly women who were giving up their careers to take care of their loved ones. If they have fallen between the cracks, we need to address that because it is an issue. We saw this in the 1950s and 1960s, and in the 1980s, and we also had that wave that went ten years ago. That wave of people are now beginning to come home to take care of their parents. While “wave” is probably the wrong word, those people are coming home and we need to ensure they do not fall between the cracks again.

The main income supports to carers provided by the Department of Social Protection are carer's allowance, carer's benefit, domiciliary care allowance and the carer’s support grant. Combined spending on all of these payments to carers in 2021 is expected to exceed €1.4 billion, which will support more than 135,000 carers this year. As part of budget 2021, the Minister for Social Protection increased the carer's support grant from its current rate of €1,700 to €1,850 from June 2021, the highest ever rate for this grant. Senator Joe O'Reilly said holistic recognition is also important for carers. Recent increases in carer's allowance and carer’s benefit highlight the Government's ongoing commitment to maintaining financial support for carers so they can participate as fully as possible in economic and social life. The Department of Social Protection has prepared a comprehensive policy review of carer's allowance, including the means test, which was laid before the Houses of the Oireachtas on 28 August 2019. It committed to keeping the range of supports available to carers under review.

Added to these income supports, a carer whose work ceases as a result of Covid-19, and whose situation qualifies them for the pandemic unemployment payment, can get the payment along with their current care income support, whether carer’s allowance or carer’s benefit.

The Government has extended eligibility for the GP visit card in recent years. Since 2015, all those over 70 have been automatically awarded the GP visit card while, in 2018, free GP visit cards were extended to persons in receipt of the carer's allowance or carer's benefit. This ensures that carers are supported to protect their own physical, mental and emotional well-being. A 10% increase in the income threshold for the GP visit card was also introduced in 2019. The programme for government commits to further extending free GP care to carers in receipt of the carer’s support grant. The Department of Health, in conjunction with the Department of Social Protection, is undertaking an analysis of the policy, legal and financial implications of this commitment.

Furthermore, the Pensions Commission, as part of the programme of work, will consider how people who have provided long-term care for incapacitated dependants can be accommodated within the State’s pension system. The Pensions Commission is due to report to the Minister for Social Protection by 30 June this year. Again, Senators Craughwell and O'Loughlin highlighted the issue of carers giving up their pensions.

There is also an over-reliance on institutional care and the new fair deal scheme. Senators Bacik and Kyne raised issues on different aspects of the scheme. We recognise that waiting lists for accessing therapy services are unacceptably long in some parts of the country. In response, €150 million in new development money was provided in budget 2021 along with additional Sláintecare funding to support the HSE's roll-out of the enhanced community care programme, ECCP. Under the ECCP, more than 2,000 staff will be recruited to community health networks. These will include nursing staff and community therapists such as physiotherapists, occupational therapists and speech and language therapists. The programme is making tangible progress with the establishment of 16 community healthcare networks, the creation of four new community intervention teams, the expansion of three community intervention team, CIT, and outpatient parenteral antimicrobial therapy, OPAT, services and the recruitment of 160 staff, with 250 more in the recruitment process.

With regard to the Assisted Decision-Making (Capacity) Act 2015, the Department of Health, together with the Department of Children, Equality, Disability, Integration and Youth, is continuing with work to address legal and policy issues relating to sections of the Act that have not been commenced. Every effort is being made to progress this work as quickly as possible and the Act aims to maximise a person's right to make his or her own decisions with legally recognised support, whenever possible. It applies to everyone and is relevant across all healthcare disciplines. It will support decision-making and maximise a person's capacity to make decisions.

The issue of training courses for carers who are family members was raised by Senators Byrne and Burke. Having regard to training for family carers to assist them in their caring roles, the HSE and its partner organisations are providing ongoing training, particularly during the Covid-19 pandemic. A range of supports are available including digital partner packs and a carer support webpage with links to information and online training courses, many of which are available free through voluntary organisations such as Family Carers Ireland. The HSE has also temporarily extended access to HSeLanD, its online training portal, to family carers during the Covid-19 pandemic. That is of interest.

With regard to respite care, the HSE has agreed to fund the provision of 27,000 hours of emergency respite through Family Carers Ireland to ensure that the immediate care needs of care recipients will be met in the event that a carer is unable to continue in his or her caring role due to Covid-19 or other reasons. Senator Black mentioned service gaps arising due to Covid-19. The number of home care hours certainly needs to be increased. An additional €100 million in new funding to enhance services and supports for people with disabilities was allocated in budget 2021 to address new developments and to support the resumption of services impacted by Covid-19. Of this funding, €5 million has been provided for the development of nine new centre-based respite care services in 2021. A sum of €30 million has been provided for disability day services to increase capacity in buildings and to provide extra staff. This will ensure that the maximum level of services will continue to be provided safely for those most in need, which will also benefit their family carers.

Home support is vital to support older people to remain in their own homes for as long as possible and to support informal carers. An additional 5 million home support hours are being provided in 2021, including 250,000 hours for persons with dementia. Funding has also been provided to improve community supports for people living with dementia, including a further expansion of the dementia adviser network. The provision of 600 new rehabilitation beds in the community will also further support older people and their family carers. Work is ongoing in the Department of Health to develop a system for the financing and regulation of home support services in addition to the introduction of a reformed model of delivery of services that will ensure the provision of home supports in a transparent, equitable manner based on standard assessments of care needs. The Government has recently given approval for the drafting of a general scheme and the heads of a Bill to establish a licensing framework for publicly funded for-profit and not-for-profit home support providers.

I welcome this step in progressing our work to establish a statutory scheme for the financing and regulation of home support. It is of the utmost importance for all home support users and providers. Senator Pauline O'Reilly mentioned the green aspect, that is, investing in warmer homes. That is very laudable and welcome and I hope it will be included by Government.

More than €1 billion is being allocated for mental health services in 2021. This includes €23 million to commence implementation of many of the short-term recommendations of Sharing the Vision: A Mental Health Policy for Everyone. The Government has therefore provided an unprecedented level of investment in the 2021 budget to improve access to primary care services, services for older people, specialist delivery services and mental health services, all of which support carers in their caring roles.

The motion is right to acknowledge the admiration of Members of the House for family carers. It is also proper that we recognise the contribution of family carers to our healthcare system. Ireland's national carers strategy is designed around a core vision which recognises and respects carers as key partners to be supported in maintaining their own health and well-being and in caring with confidence and to be empowered to participate as fully as possible in economic and social life. Again, the Government recognises carers and thanks them for their vital contribution in supporting loved ones with illness and disabilities. The Government continues to work to implement the commitments made to carers in the programme for Government and to offer a range of supports that will enable them to continue caring with confidence. Unfortunately, I am not in a position to accept Senator Black's amendment. I am sorry.

I thank the Minister of State for taking this debate and for accepting the motion. I thank all contributors across the House. It has been very good to hear about not only the matters we crafted into the motion, but all of those additional matters. We will come away from this debate having seen an emphasis on means testing and the financing of carers. Senator Mullen said that it should not be about the money and that it is almost offensive to talk about it but this is actually all about the money. Platitudes and thanks are of no use when people have bills to pay. I remember being astonished when studying jurisprudence on the idea of law in economics but, at the end of the day, it comes down to a business case. There is no better business case to be made than that to be made for supporting family carers in their contribution to the support of the State. That business case is there. There are extensive commitments in the programme for Government that will address many of our concerns. The purpose of this motion was to accelerate the addressing of those concerns and to move them up the political agenda. That is what this was about.

I will mention a couple of things. I appreciate the amendment put forward. We can put a red circle around some aspects of it. Only a few weeks ago, the Minister of State, Deputy Rabbitte, spoke here about the Assisted Decision-Making (Capacity) Act 2015 and the fact that it will have to be amended with regard to enabling the decision-making service and other aspects of the Bill. Some of the matters raised in the amendment will be addressed really well in that context, to which it is probably more pertinent. I would really welcome the opportunity to work with the Senator to make sure they are on the agenda in that regard.

I pay tribute to the Minister, Deputy Humphreys, and her predecessor, the Leader of the House, Senator Doherty. There has been momentum within the Department of Social Protection since at least 2019, if not well before, with regard to addressing issues affecting family carers. There is an issue with returning emigrants coming home to care for their parents getting immediate access to entitlements. That is an important issue, which the Minister of State highlighted very well in his contribution. Another point to be taken on board from the debate relates to people who are here on stamp 2 student visas, about whom we hear in the context of the debate on Deliveroo.

However, within this context, many of them are providing personal care services with professional organisations in the State. They have been on the front line. It would be really nice for us to consider addressing their permits and to examine the demands put forward in recognition of the incredible contribution they have made at the front line especially during the past year.

A carers register is an excellent idea. It would have facilitated the vaccination programme. It is regrettable the great deal of advocacy and lobbying we did on behalf of family carers went unheard when it came to the vaccine roll-out. There was an excellent case for that.

At the end of this debate, this is about pragmatic and practical supports, ensuring that no matter where one lives in the country one can assess them, we deliver on the carer's guarantee and we take on board Senator Ahearn's comments with regard to how that is administered and make sure that is rolled out.

I am not one for biblical quotes but there is one to which I return again and again, namely, "The labourer is worthy of his hire". In this instance, the fact that many of the carers in our country are family members should not get in the way of monetising that role and ensuring they have comfort in the here and now, that they can pay their bills, that in the years to come when they are perhaps past the need for caring - when parents are deceased or situations have changed - they have the pension they deserve and have not been in any way discriminated against because of their generosity of spirit and commitment and that we ensure we do that. I thank the Minister of State and the members.

We will deal with the amendments. Is amendment No. 1 agreed to?

Amendment put and declared lost.

I move amendment No. 2:

After the fifth paragraph under “calls on the Government to:” to insert the following paragraph:

“- ensure that where someone wishes to provide care to a family member who would prefer to remain at home rather than be placed in an institutional setting, every effort is made to provide the supports needed to make that possible;”

I second the amendment.

Amendment put and declared lost.

I move amendment No. 3:

After the fifth paragraph under “calls on the Government to:” to insert the following paragraph:

“- strengthen regulation of nursing homes and other residential care facilities;”

I second the amendment.

Amendment put and declared lost.

I move amendment No. 4:

After the fifth paragraph under “calls on the Government to:” to insert the following paragraph:

“- review and report on how the State’s policies and regulations around care can best align with the State’s obligations under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD);”

I second the amendment.

Amendment put and declared lost.

I move amendment No. 5:

After the fifth paragraph under “calls on the Government to:” to insert the following paragraph:

“- publish a report outlining pathways to supported independent living in the community available to those seeking this option;”

I second the amendment.

Amendment put and declared lost.

I move amendment No. 6:

After the fifth paragraph under “calls on the Government to:” to insert the following paragraph:

“- publish a report on potential pathways towards a right to personal assistance services;”

I second the amendment.

Amendment put and declared lost.

I move amendment No. 7:

In the second last paragraph under “calls on the Government to:” to delete “patients” and substitute “recipients of care”.

I second the amendment.

Amendment put and declared lost.

I move amendment No. 8:

After the final paragraph under “calls on the Government to:” insert the following paragraph:

“- engage in crisis management planning for home care around scenarios in which support services might experience disruption.”.

I second the amendment.

Amendment put and declared lost.
Question, "That the motion be agreed to", put and declared carried.

I am disappointed we did not get any of the amendments accepted today but I look forward to further engagement with the Minister of State. The Civil Engagement Group will definitely be following up on this.

It is not personal.

Sitting suspended at 5.47 p.m. and resumed at 6.20 p.m.
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