Caring for Carers: Motion [Private Members]

I move:

That Dáil Éireann:

notes that:

— for too long family carers have been taken for granted and denied the supports that they and their loved ones need;

— family carers have been wrongly forced by Government after Government to fight for their children’s basic rights to education and vital therapeutic supports, and as the abhorrent practices uncovered by RTÉ Investigates demonstrated, the State does not fight fair;

— the failure of the Government to prioritise family carers in the Covid-19 vaccine rollout programme shows they have yet again been forgotten and forced to fight to ensure the wellbeing of their children and loved ones; and

— carers have been stretched to the limit over the past year due to the Covid-19 pandemic, providing increasing levels of care with less support or respite;

further notes that:

— the income supports in place for family carers are not adequate;

— the income disregard for Carer’s Allowance has remained the same rate for the last twelve years, sitting at €332.50 (€665 per couple), despite steady increases to average earnings and the cost of living in this time;

— the self-employed are currently deemed ineligible for Carer’s Benefit;

— many carers do not currently qualify for free general practitioner (GP) care;

— current waiting lists for counselling in Primary Care extend to over 10,000 persons in need of help;

— the closure of respite, day and overnight services has had a profound negative effect on the wellbeing of carers; and

— the inequitable treatment of carers in respect of transportation services to these vital supports are currently free in some Health Service Executive Community Healthcare Organisations areas, but not in others;


— the renewed commitment in the Programme for Government: Our Shared Future to ‘review and update the National Carers’ Strategy’, and calls for immediate action to do so; and

— the limited Budget 2021 increase to the Carer’s Support Grant; and

calls on the Government to:

— prioritise family carers in the Covid-19 vaccine roll-out;

— work with family carers to deliver the services and supports that their loved ones need and immediately end the practice of compiling and storing secret dossiers on children using information gathered by health, education and social care professionals, shared without the express consent of their parents;

— relax the Carer’s Allowance means test, by raising the income disregard thresholds in order to increase eligibility and payments;

— further increase the annual Carer’s Support Grant;

— increase Carer’s Allowance and Carer’s Benefit in every budget over five years;

— establish a discretionary fund for Covid-19 utility debt to aid carers and people living with a disability struggling with heating and electricity costs;

— extend eligibility for Carer’s Benefit to the self-employed;

— extend an automatic GP visit card to all recipients of the Carer’s Support Grant;

— create an emergency talk therapy fund, to provide sessions with an accredited counsellor or therapist in the private system for carers on referral from a GP;

— ensure that family carers get the respite they need by building up respite capacity, including delivery of hours and overnights through a doubling of public expenditure;

— prioritise the full resumption of respite Day Services in the re-opening and implement the standardisation of the provision of free transport to and from these vital services; and

— update and publish the National Carers’ Strategy in 2021, with a dedicated budget and timeframe to ensure the implementation of all actions.

I am sharing time with a number of colleagues. I appeal to the Minister to support this motion and, more than that, to ensure all of the asks in it, which are supported by Family Carers Ireland and family carers, many of whom I have engaged with in recent weeks and months, are implemented and delivered. For too long, we have seen motions passed by this House, cynically in some cases by the Government, and then the Government not delivering or implementing, either in deed or in spirit, what has been proposed. That cannot happen in this case. The Minister must recognise the work carers do. He must send out a powerful message that they and the work they do are valued and they will be a priority for the Government in respect of income supports, the resumption of services and the vaccine roll-out.

The past year has been an exceptionally difficult one for family carers. They have been asked to do more with less. We should start by commending all family carers on the huge work they have done and the personal sacrifices they have made to ensure the people they look after get all the care and support they need.

The reality is that before the pandemic, the supports were already lacking and for far too long, family carers had been taken for granted and had been denied the supports that they and our loved ones need. After many promises over many years, the one thing I hear from family carers, time and again, having engaged with hundreds of them on Zoom calls and online in recent weeks, is that they do not feel valued, listened to or respected. They ask us to convey to the Minister in the strongest possible terms that now is the time to stand up for carers and to make sure that the income supports for them and for the people they look after, as well as all of the other justifiable demands that they have, are actioned by the Government. That falls to the Minister and to others in Government.

They feel that they have been wronged and treated with suspicion. We saw last week the exposure of the secret collection of data about vulnerable children and their families. I am talking about the "RTÉ Investigates" programme. It was about children with special needs, whose families were taking the State to court to ensure that their children got the access to services and the education they needed and deserved. The State collected graphic and sensitive data about those children, which has really horrified those people and their families, many of whom are carers. We will deal with that issue tomorrow but it is unacceptable. The Minister has to make sure, as Minister for Health, that that practice is stopped and that there is full open disclosure, and that those children and their families, some of whom are carers, are given full access to all of that information.

They also feel and it is a reality that they were excluded from being a priority in the vaccine roll-out. It is unacceptable that they were not recognised as a distinct cohort. What we saw from the Government yesterday was a clear admission of failure when it abandoned all of the allocation groups over the next weeks and months. It is an admission of failure and that its system was not fit for purpose. It simply was not able to roll out the vaccine in a fair and efficient way because it has not made the necessary investments. Childcare workers, teachers, special needs assistants, SNAs, carers, members of the Garda and many more key workers, including those who work in supermarkets and in retail, who have been real heroes, will now be shafted because of the inability of the Government to get its act right. Family carers will also be sacrificed as part of that. It is unacceptable that key essential workers, including carers, are being abandoned because the Government has not made the necessary investments and has not got its act together.

There are many requests in this motion. My colleagues will deal with income supports and the need for real investment in the new National Carers' Strategy, as well as issues with respite and access to services. I appeal to the Minister to listen to what is being said, to engage with family carers, and to please put in place all the supports that they need to get them through what has been a difficult time up to now. When services are resumed, it cannot be on the basis of what went before but has to be on the basis of having properly resourced services and valuing the work that carers do.

While preparing to bring forward this motion, I thought about the many carers whom I have met and know. We all know many carers in our own communities and perhaps even in our own families. We know carers who are on their own, lone parents who look after a child and who battle to get domiciliary care allowance for that child, for which it can take years to qualify. Last year, the appeals took between 23 and 30 weeks. That is how long parents were left battling to get this allowance for their children and trying to prove that their children had additional needs compared with other children of the same age. That battle is totally unfair and has to be looked at. Carers who are waiting for the bin waiver contribution that was promised in 2017 worry when the bin is collected if they will be able to afford to cover the costs of the disposal of incontinence wear for their loved ones.

Older carers are struggling to keep going and are relying on respite which, nine times out of ten, is not available. When they get to the point where they possibly have to look at long-term residential care, they face waiting lists and increased costs. In fact, I understand that tomorrow the cost of long-term residential care will increase yet again.

Carers continue to lose out. Many family carers were struggling financially long before Covid-19 ever hit. The Minister of State will be aware of the survey of 1,250 carers carried out by Family Carers Ireland in late 2020. Some 70% of respondents were struggling to make ends meet, 57% were either experiencing or likely to experience debt as a result of their caring and over half felt that their financial circumstances were affecting their health. All of that was pre-Covid. Imagine what it must be like to be a family carer looking after a loved one day in, day out, 24-7, and at the same time to be worrying about paying bills, increased costs and just keeping the home warm and food on the table?

Carers are unique in our social welfare system because they are expected to work full-time for a very low payment. It has been blatantly obvious for a long time that we need to address the means test, the income disregard in particular. It is not reflective of wages, which have increased since 2008, or the increased cost of living. That has not been recognised because the income disregard has not changed since 2008.

In the budget before last, the Government increased the hours that carers can work from 15 to 18.5 hours per week. It told carers they could work more outside the home if they wanted to. Of course, that meant earning more, which immediately had an impact on, and reduced, 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 was a grave mistake that that was not done. Will the Minister of State indicate whether Fine Gael's commitment to family carers is still that set out in the Towards 2016 plan, under which it is proposed to increase the earnings disregard to allow people on the average industrial wage to qualify for carer's allowance?

On the payment rate, a person who leaves work and goes on to receive carer's benefit of €220 per week may be leaving a job that pays €400 or €500 a week. He or she will experience a huge drop in income. We know that over half of people on carer's allowance are on a reduced rate, so they are not even getting that maximum payment of €219. This means that far too many of them are living in poverty. This motion commits to an increase, in the next five budgets, in the carer's allowance and benefit, which is most important for family carers.

On the carer's support grant, I proposed an amendment to last year's Social Welfare Bill to provide that payment be made in two instalments this year. This had been called for by Family Carers Ireland. The support grant needs to increase to €2,000. The Government should consider the option of having it paid in two instalments. That would have gone a long way to recognising and giving carers some help in the midst of the Covid pandemic.

On State pensions, I hope the total contributions approach will do what it is supposed to do, but we need to make sure of that. The National Carers' Strategy of 2012 has not been reviewed since. We are still waiting on the review. Today, in implementing these proposals, every Deputy has an opportunity to give carers who provide loving care to a loved one every day the respect they deserve.

It is estimated that family carers in Ireland number in excess of 500,000. Our carers do incredible work. They look after family members who are ill, have dementia or have a disability. It is estimated that carers save the State €20 billion every year. However, our family carers feel forgotten about, ignored, taken for granted and, in many cases, worthless.

The past year has had an unprecedented negative effect on carers. This time last year, when schools and day services for elderly people and those with disabilities closed, the full burden of care was left with family carers. Due to the restrictions and the limitations placed on family interaction, family carers were left in the position that they could not even rely on other family members to help out.

After a tremendously difficult year, when the invaluable work carers do could be recognised by their inclusion in the prioritisation groups for vaccination, they are left out again. Every year, when the winter flu jab is administered to elderly and medically vulnerable people, family carers are offered the vaccine at the same time. Why could that not be done in the case of the Covid vaccine? It is imperative that it be offered to all family carers. If carers contract Covid, they will not be in a position to provide care. Who then will look after the people who need care?

Respite for carers is vital but its provision varies greatly from place to place throughout the country. In many cases, it is very limited, if available at all. Respite needs to be tailored to meet the needs of the family as one size does not fit all. This could vary from weekend to evening care and include in-house assistance. Many carers tell me that their respite is booked only for it to be cancelled at short notice if an emergency case arises. This should not be allowed to happen. Sufficient spaces must be made available to cater for emergencies and those who are booked into respite.

The application process for the carer's allowance takes far too long, with carers sometimes left waiting for months for a decision on the allocation of the payment. That needs to be addressed. Carers should not have to go searching for, or inquiring about, what supports are available to them and their family. They should be provided with that information as soon as they begin working as a carer. I have met carers who did not know, for example, that they could claim the domiciliary care allowance. One woman did not know about it until her son was in his 20s. Parents of children with autism should not be denied the right to the domiciliary care allowance. Every case must be adjudicated independently. It is imperative that training is provided to all carers in order that they know what to expect from certain conditions and disabilities and are best placed to provide the support needed.

Day services for people with a disability, who are often older people, must be resumed at full capacity as soon as possible. Transport to the services must be provided free to all with a travel pass who usually use public transport, including Local Link services.

Income supports for carers are totally inadequate. The carer's allowance is a means-tested payment and the threshold on which the test is based has not been changed in 12 years, despite wages and the cost of living having risen substantially in that time. The threshold must be raised immediately. The carer's allowance payment is not sufficient and many of those depending on it are at constant risk of poverty. Many carers have pointed out to me that they are working for approximately €1 an hour, taking into account that they work 24 hours, seven days a week in some cases. I am calling today for an increase in the carer's allowance and the means test threshold. Carer's allowance and carer's benefit should be extended to the self-employed. In addition, there should be an increase in the respite support grant, with an option for it to be received as two separate payments.

A discretionary fund should be introduced to help carers cover the costs linked to Covid, such as the extra cost of electricity and heat due to the family being confined to the house for most of the year. What has become of the support of €75 per year to assist persons with medical incontinence, which was announced by the Government in 2017? The GP card should be extended to all carers in receipt of the carer's support grant. Emergency talk therapy funds should be provided to ensure carers have access to an accredited counsellor on referral from a GP.

Finally, the National Carers' Strategy was introduced in 2012 on a cost-neutral basis, which has meant that no funding was allocated to its implementation then or since. The excuse given at the time was that we were coming out of a recession. Nine years on, the strategy is still not implemented. The Government has made a commitment in the programme for Government to do so and it must be held to account on that promise. Update and implementation of the strategy is imperative.

Ar maidin, tá cúramaithe teaghlaigh ar fud fad na tíre seo ag tabhairt aire, cuidiú agus cúram do dhaoine atá an cúram de dhíth orthu. Ní féidir luach a chur ar an obair atá idir lámha ag na cúramaithe seo. Níl dabht ar bith go gcaithfear tacú leo agus sin an rud atá os comhair na Dála inniu.

Carers have been the unsung heroes of our society for many years. Successive Governments have undervalued, or not valued at all, the half a million carers who provide much important unpaid work in caring for their loved ones. That work is an important part of our economy. Without carers, we would have a collapse of the system of care for people in our society. That system would simply break down. In many ways, carers have been the forgotten people of this pandemic. In fact, they were forgotten by the Government and undervalued and taken for granted by the State well before the pandemic ever began.

Their work and value must be recognised and this motion does just that. It commits the Government to prioritising carers in the vaccination programme, providing financial support for carers in key areas and giving respite for carers who are exhausted and need a break. Every Deputy in the House knows carers, the work they do and the needs they have for respite.

I appeal to the Minister today on behalf of carers and others like carers who are unsung heroes. We have stood in this Chamber and given rounds of applause to these key workers. No matter how bad the pandemic was, we asked these people to provide a service and ensure we could put food on the table, our loved ones were cared for, communities were safe, children were educated and children with special needs had assistance in their classroom. The Government's decision yesterday to deprioritise those individuals because it simply has not done its own work over the past year to identify those individuals was shameful. Those people were in classrooms and communities, keeping us safe and providing care for loved ones. They deserve to be prioritised in the vaccination programme. I ask the Minister to reverse the awful decision taken by the Government last night.

This morning, we will hear Ministers and Deputies praise carers for the fantastic work they do and although that praise is justified, carers have, unfortunately, heard it all before from the Government. Carers do not need any more sympathy, kind words, empty rhetoric or plamásing from the Government. They need recognition, support and active help. Carers rightfully feel they have been abandoned by the Government for far too long. Over the past year, many of the supports that were in place have been withdrawn, despite family carers providing increased levels of care. Carers have not had a break or any respite whatever.

Carers are the backbone of our society and the 500,000 family carers provide care to some of our most vulnerable citizens. In doing so, they ensure the person being cared for stays in his or her own home, saving the State approximately €20 billion per year.

This week, I was contacted by a constituent who cares for her husband. She told me she brought him to the Aviva stadium for his vaccination last week as he could not get there himself. She said the majority of other people there receiving their vaccinations were also family carers. All the staff at the Aviva are vaccinated but despite this woman being her husband's vital support system as a family carer, who brings him for many CT scans and arranges his many medical appointments and for him to take his daily medication, she, along with all other family carers, has been completely overlooked and has no idea when she will be vaccinated. The Government must prioritise family carers in the Covid-19 vaccination roll-out.

It is time to stop taking family carers for granted. They are exhausted and need a break. We must see the resumption of day services providing crucial support and relief for families. We must also build up respite capacity, including overnight facilities, and create an emergency talk therapy fund. It is also essential to provide family carers with the financial support they need. It is time to stop talking in platitudes; it is time for action.

I welcome the opportunity to address the House on matters of concern to family carers. All over the country today we have carers looking after children, parents and in-laws. There are young carers caught between commitments to their nearest and dearest and their future life choices. The carers I know describe lives that are both enriched and yet confined by their commitments.

Family carers are the backbone of care provision in our country, whether caring for a child or a parent with a disability, somebody with an 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.

That is why the Government is not opposing today’s motion.

Ireland’s army of carers give up a lot to look after their loved ones and they have cared for the most vulnerable during this pandemic. There is no doubt that the burden on 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. I thank them sincerely for everything they have done during the pandemic.

I understand why family carers are seeking to be prioritised in the vaccine programme. There is nothing we would all like more than to be able to vaccinate all carers immediately. I asked the national immunisation advisory committee, NIAC, and the Department of Health to look carefully at this case and many other cases. As I hope we all agree, the priority for the vaccination programme is to reduce the risk of serious illness and death from Covid. This is the basis for the advice from NIAC and the National Public Health Emergency Team, NPHET. This is why so many who are being cared for have already been vaccinated or are in one of the cohorts to be vaccinated soon. Two of the biggest risk factors for Covid are age and underlying conditions. This is why we are now vaccinating those aged 70 and older, as well as those with underlying conditions that put them at very high risk from Covid. It is why NIAC recommended vaccinating according to age and underlying condition. By following this approach, we are vaccinating those being cared for as quickly as possible. It also means that we are vaccinating carers, along with others, according to the level of risk they are themselves at from Covid.

It is the ambition of our programme for Government to prioritise policy actions that protect the most vulnerable and put in place new measures for economic decision-making that reflect the welfare and quality of life of those living in Ireland, as our economy returns to growth in the aftermath of the pandemic. In relation to health and social care, the Government has provided an unprecedented level of investment in the 2021 budget to improve access to primary care services, older people’s services, specialist disability services, mental health services and well-being.

We recognise that waiting lists for accessing therapy services in some parts of the country are unacceptably long and that this is a matter of legitimate concern for individuals and their families and carers. In response, budget 2021 has provided €150 million in new development money, plus additional Sláintecare funding, to support the roll-out of the enhanced community care programme. This level of investment in primary care reform is unprecedented and is intended to address historic capacity deficits in the sector. It forms part of wider efforts to deliver the promise of care being delivered in the right place at the right time and as close to home as possible.

Under the enhanced community care programme, over 2,000 staff will be recruited to community health networks, with a particular focus on nursing and community therapists such as physiotherapists, psychologists, occupational therapists and speech and language therapists. The investment in community healthcare networks, together with wider reform and policy initiatives to support integrated community care services, will improve access to the therapies that individuals, families and carers need and deserve.

The Ministers of State, Deputies Rabbitte and Feighan, will shortly outline the significant work they are leading to build the capacity of our specialist disability services, the arrangements in train to resume day and respite services and the highly ambitious plans in train to progress wellness and other supports which are valuable in the community and which will be very important to family carers and those for whom they care.

At the same time, we are progressing a highly ambitious plan to greatly increase home care. Home support is vital to enable older people to remain in their own homes for as long as possible and to support family carers. An additional 5 million home care hours will be provided this year. We are also introducing an assessment tool to ensure that the services provided are matched to the needs of each individual. I have spoken with many carers who believe this will bring much-needed improvements to home care, to the people being cared for and to the lives of carers.

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 and equitable manner.

I expect to be in a position to announce some very positive developments on this in the near future.

I will conclude by again acknowledging the enormous benefit family carers provide every single day to their loved ones and our society. It is essential that we bring in these reforms to support family carers and make their work and lives easier. The past year has been difficult for everybody, for every family. This is particularly true for family carers and those for whom they care. As a result of the efforts the nation has made to suppress the virus and the extraordinarily positive impact of the vaccination programme, we were able to share a plan yesterday by means of which we can take Ireland out of this pandemic. Subject to vaccines arriving, four out of every five adults can be offered a vaccine by the end of June. As we move through April and supplies increase, more people, including more carers, will be vaccinated and protected and will be able to begin returning to the normality we all crave.

I welcome the opportunity to contribute to this debate. This matter is extremely important to me. It is crucial that we send out a clear signal that the carers who provide such great care in our communities are valued and supported.

I wish to address a number of issues in the short time available. The first of these is the means test for carers, a matter about which I have spoken many times in the Dáil. I refer to cases where people give up full-time jobs in order to care for an elderly relative, a sibling or a child and are paid carer's benefit for two years. After that period, because one partner in a relationship is working, the person providing the care is no longer eligible for carer’s allowance. We have to look at the care that is required in such situations. We need to review carer's allowance. What is needed by the person who is receiving care is fundamentally important as we move forward. Many people find themselves in the circumstances I have just outlined. There has been a great deal of discussion about the matter and some people in the Department have stated that it is being considered. Care need must be the most important piece in terms of the structures relating to carer's allowance as we move forward.

We also need to change the attitude in terms of carers. Last week's "Prime Time" programme certainly brought home to me that there is almost an ingrained culture within society in terms of begrudging the person who needs care the full support of the State. I took from the programme that this is inherent in the State. We must be robust in the context of how we protect the most vulnerable. Much has changed over the past number of years in terms of carer's allowance, the carer's support grant and the half-rate carer's allowance. They were all great initiatives almost a generation ago. It is time to take matters further and ensure that the State accepts the massive contribution made by those who provide care within communities for their families and loved ones. The review of carer's allowance should consider what is barring these people from getting supports from the State.

I could also speak about the issues also to which the Minister referred in the context of occupational therapy and speech and language therapy. Services in this regard are simply not available within the public sector right now. We should look at that because a massive difficulty is building up.

Debate adjourned.