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Seanad Éireann debate -
Wednesday, 28 Jun 2017

Vol. 252 No. 10

Home Care Services: Motion

I understand this is the Minister of State's fourth time in the Seanad in his first week in office. He is very welcome back and I congratulate him on his appointment as Minister of State.

I move:

That Seanad Éireann:

noting that:

the Department of Health contends that home care can be a cost-effective alternative to long-term residential care for some older people;

despite significant increases between 2008 and 2015 in those aged 65 years and over and those aged 85 years and over, there was a decrease in the number of people receiving home help and home care packages;

it has been argued that the implementation of the Fair Deal Scheme, in the absence of any similar structured scheme for home-based care, may draw people into residential care prematurely;

the majority (63 per cent) of people with dementia live at home and the annual cost of dementia is €1.69 billion per annum, 48 per cent of which is attributable to informal family care;

insufficient provision of home help and home care packages channel people to long-term care, causing the institutionalisation of people with dementia; and

people with dementia have a preference to remain living at home for as long as possible and that with the right support, this is possible for the majority; and

acknowledging that:

€22 million was allocated through the National Dementia Strategy Implementation Plan for the delivery of intensive home care packages for people with dementia and that these packages are operating in eight pilot sites;

Budget 2017 provided an additional €10 million in new development funding for home care and for continuation of the additional €30 million for home care announced in July, 2016;

the Minister of State at the Department of Health with special responsibility for Mental Health and Older People has announced plans to begin a consultation process on the development of a statutory scheme for home care;

calls for:

an approach to home care that addresses the inequity of service provision that currently exists across the country;

positive aspects of the Nursing Home Support Scheme to be adopted for home care such as the standardised process for assessment, certainty of entitlement and centralised, multi-annual, ring-fenced funding;

flexible home care for people with dementia, which meets individual needs and moves away from a time-to-task approach;

increased investment in 2018 to meet the particular needs of people living with dementia in the community; and

adequate resources to ensure full implementation of the National Dementia Strategy.

I thank the Minister of State for attending to take this matter.

We are now thankfully living longer and most of us will live independently for the rest of our lives. Fewer than 5% of all our elderly require care late on in life and all parties agree every effort should be made to facilitate this in so far as possible in the comfort and security of their own homes. Fianna Fáil believes that the funding allocated to enable older people remain at home provides not only the best value for money but also the most humane result for older people. There are many thousands of families helping their loved ones to stay at home when they are ill or frail and they receive very little assistance from the State. This needs to change, especially to deal with the growing challenge of dementia care in Ireland.

A June 2016 report on home care by the Irish Association of Social Workers, Age Action Ireland, the Alzheimer's Society of Ireland and University College Dublin's school of social work offers a joint assessment of home care in Ireland. It was a timely study and a welcome contribution to the debate on how best to care for our older people. We have already heard numerous reports of people finding it difficult to access adequate home care. We saw this yesterday with the tale of the Devereaux older couple who thankfully were reunited in the same care home but we saw how their family had to resort to going on the national airwaves to ensure they got the care they deserve and require. It is important we understand why this is the case and what can be done to resolve the difficulties people have in accessing home care and nursing home care.

Fianna Fáil believes that the funding allocated to enable older people to remain at home not only provides the most comforting and dignified care but also the best value for money for the State. In 2015, the HSE estimated that some 2.2 million extra hours of home help and a further 3,500 home care packages for older people are required. Unfortunately, this was not provided for in 2016 service plan. We are firmly of the view that these additional resources must be provided for older people. We acknowledge there is a commitment in the programme for Government to increase home care packages and home help hours but we are concerned that there is a lack of detail surrounding how these commitments will be achieved.

The June 2016 report clearly highlighted the inconsistencies between the various local health areas when it comes to the availability of home care. This must be addressed as a matter of urgency. It is unacceptable that there are so many inconsistencies in the system with many older people missing out on home care just because of the area in which they live. Real progress in meeting the challenge of home care must be made during the lifetime of this Oireachtas. It is the preferred option for older people and it is well acknowledged that the care based around the home is vital for keeping people active in their own communities, which, in turn, has enormous health benefits for the individual.

I will refer to a case highlighted by Joe Duffy. He interviewed a lady six months ago who was in a nursing home. She was there for respite care as she had broken a limb and once that healed she wanted to return home. She went back on the national airwaves and Joe helped her to grow a small campaign, and she ended up returning home where she wanted to be. She wanted to be near her friends and her bridge club. Ultimately, hers is a story that resonated with many people whose mothers, fathers, aunts and uncles want to be at home. That is the best and most comfortable place for older people.

The 2017 HSE service plan announced that no additional home help hours will be provided. This will put severe pressure on families and it will continue the chronic overcrowding in our hospitals. As we do not have enough nursing home beds and people are not able to get the home help they need at home, people are keeping their loved ones in hospitals and this is causing some delay in ensuring beds are vacant for people who are more urgent cases. The HSE service plan ignored the crying need for additional home help hours across the country and it will ensure that thousands of older people will be left without the support they need. The plan also ignores the commitment in the programme for Government to increase the number of home help hours.

The 2016 Fine Gael manifesto pledged an additional 2.2 million home help hours over the next five years. We should have been seeing in the region of 400,000 home help hours being announced for 2017 if it was keeping to its commitment. The upshot of this decision is that further pressure will be put on the already stretched nursing home system as older people will not have the support they need to stay in their homes. Health professionals all say the outcomes are better for older people if they remain in their own homes supported by home helps and their families. In addition to adding to the pressure on the nursing home system, a lack of home help hours will ensure that older people with chronic conditions remain in the hospital system long after they are deemed able to leave.

Fianna Fail introduced a Bill in the Dáil, led Deputy Willie O'Dea, that seeks to expand home care. The fair deal scheme is provided on a statutory basis but home care packages are discretionary and not provided on a statutory basis. It is too ad hoc and not transparent. The Fianna Fáil Bill proposes that home care services be offered to people in place of long-term residential care in circumstances where the provision of a home care package is less costly to the State, compared to long-term residential care. My colleague, Deputy O'Dea, pointed out that home care services can offer a better outcome for patients and such services are less costly to the State compared to residential care.

If this Bill is passed, it will be an enormous step forward in helping to empower older people. It will enshrine in legislation the right to services that will allow them stay in their own homes and communities as long as possible. This not only benefits the individuals concerned and their families but also the State due to fewer demands being placed on long-term residential care.

I second the motion.

I am going to speak about dementia. It is an issue that impacts on very many people's lives, not only the lives of people living with dementia or Alzheimer's but on the lives of the loved ones who care for them on a daily basis. The World Health Organization has described dementia as one of the most serious social challenges facing the world today. Dementia is a life-changing condition both for the person and for their family. The Government must step up in terms of its services to ensure that every person living with dementia has the best possible quality of life and, above all, quality of care.

There are 55,000 people in Ireland living with dementia and a further 165,000 directly affected by it. It is hard to believe 11 people are diagnosed with it every day. The figures are astounding. It is expected that one in three people aged over 65 years will develop dementia and that the number living with it will double in the next 20 years and treble in the next 35. It is estimated that there are 400,000 people aged under 65 years in Ireland living with young onset dementia and there are no services available. If a person is under 65 years and has dementia, there are no services available for him or her. My nephew has Down's syndrome. There are 700 people with Down's syndrome who have been diagnosed with dementia. It is early onset dementia which occurs in the 40s, which is really serious. Service provision really needs to be considered in that regard.

There are other major costs associated with dementia outside the economic and financial costs that often remain unrecognised. These hidden costs place considerable emotional and social strain on the individuals and family members who provide the main bulk of care. Many of these family carers are frail and elderly and struggle to find the information and service supports needed to enable them to continue with their day-to-day caring role. Some are younger adults with children and sometimes struggle. They may also have to give up their jobs. Issues arise in that regard in that there is a lack of information and entitlements. Carers are trying to keep their families at home and mind them. The scale of the problem is such that governments across the world are being forced to review their policies and reconfigure older people's services. European countries have well developed national dementia strategies aimed at providing a suite of services tailored to individual needs and designed to help members of the public with dementia. In recent days I read a document that I believe is so important. It states the majority of people with dementia, 63%, live in the community and use the services provided. It also states:

It is essential that people living with dementia remain connected with their local communities and that they have access to the right information at the right time. Do not underestimate the difference you can make if you have a basic understanding of dementia. People with dementia have told us that it is the attitude of those they meet in providing services which makes the biggest difference to their experience.

That is a fact of life. It is the understanding that matters.

Figures obtained from the HSE under the Freedom of Information Act reveal that at least 544 patients were waiting for appointments across all regions from December 2016 to January 2017. Seemingly, there are two clinics for which statistics could not be obtained. Some patients were waiting as long as 14 months to be seen at the memory clinic. As people are living longer, it is crucial that services be accessed as soon as possible, as timing is everything. The Alzheimer Society of Ireland has called on the Government and the HSE to adopt an all-Ireland approach to planning dementia services to ensure citizens are treated equally. That is crucial. It is not acceptable that there is no clear availability of the service. There is no service provision; rather, there is a lack of services and information. It all goes back to this the whole time.

Fianna Fáil wants to see a progressive increase in investment and also a national strategy for the long-term care of older people. This issue needs to be addressed, as people are living longer and the incidence of dementia seems to be growing rapidly. We need to ensure there will be investment and funding provided in order that anyone with dementia will receive full care.

I, too, welcome the Minister who has been here four times in a week. He has probably been here more times than some Members in the past year. I thank him for attending and showing his enthusiasm.

The Government is very determined to support older people to enable them to live independently and with dignity in their own homes and communities. As many Members know, the HSE provides a range of community-based services aimed at ensuring older people receive safe, timely and appropriate care and treatment at the lowest level of complexity and as close to home as possible. The overall funding for services for older people is not insignificant. In 2017 it is €765 million. This includes approximately €375 million for the direct provision of home care. The HSE's national service plan provides for a target of 10.7 million home help hours, 16,750 home care packages and 190 intensive home care packages for clients with very complex needs.

My mother availed of home help. It was absolutely great to have somebody come in for half an hour four or five days a week. The service was very helpful because members of the family were away working. It was great and we really appreciated it. Most of those availing of the service receive a small amount of assistance, but it is not insignificant and they genuinely appreciate it. I pay tribute to the staff who attended to my mother. They showed great care and gave her great joy every day, for which we were very thankful.

By the end of April, the HSE was providing 1,600 packages and 436,000 home help hours. All of the new applicants on the waiting list in my area - Roscommon, Galway and Mayo - had 2.25 hours of home care a week approved for implementation as of 31 March. I wish it was more because the service represents value for money. I am not saying resources are not limited, but I believe money could be taken from other areas and invested in the home help service because I have seen at first hand the work that is done. It must be emphasised that a home care service is allocated to those deemed to be of the highest priority, having regard to the available budget. Despite the substantial expenditure on them each year, demand continues to grow for HSE home care services. It is driven, in large part, by the rise in the number of older people. It is estimated that the number of people over the age of 65 years will double in the coming years, while the number over 85 is expected to treble.

Of course, there is much more to be done. The HSE acknowledges that a shortage of carers has had an impact on the implementation of approved care packages in some areas of the country. It is widely accepted that there is a considerable demand for these services over and above existing service levels. Furthermore, home care arrangements developed during the years with a significant local focus. There is now a considerable variation in accessing services in various parts of the country. Despite these challenges, however, A Programme for a Partnership Government includes a commitment to increase funding for home support services, to improve these supports, to introduce a uniform home care service in order that all recipients can receive quality support seven days a week, where possible, and to review the management, operation and funding of national home help services. The Government wants to improve community-based services in order that people can live with confidence, security and dignity in their own home for as long as possible. To make this happen, the Department of Health is developing policy proposals for the future financing and regulation of home care services.

I agree fully with the Government's view that a statutory home care scheme will help to introduce clear rules for the services for which individuals are eligible and how decisions are made on allocating services. It is a very difficult issue. I would not like to be in the position of trying to allocate services, but I believe the people who are making these decisions do so in the best interests of patients and as fairly as possible.

I understand a significant amount of detailed preparation needs to be done before final decisions are taken on the form a home care scheme should take and the regulation of services. I also understand the Department is engaged in a detailed process to determine what type of home care scheme is best. Circumstances evolve and we always need to ascertain the best means of delivery. What happened five years ago and what should happen now may be totally different; therefore, reviewing the approach adopted is the best option. The process in which the Department is engaged will consider the future design of both the funding and regulation systems for these crucial services. An important step in the process is public consultation which I believe will be launched shortly. The purpose of the process will be to allow all those who have views on this topic to have their say, including older people, their families and health care workers.

The aim of the national dementia strategy, published in December 2014, is to bring about an improvement in order that people with dementia can live well for as long as possible and have services and supports delivered in the best way possible. A number of priority areas for action have been identified. They include the provision of integrated services, supports and care for people with dementia and their carers.

To meet this priority and to support the implementation of the strategy, Atlantic Philanthropies, the Department of Health and the HSE have agreed a core investment programme of €27.5 million, which is very welcome. This programme includes the roll-out of intensive support and home care packages for people with dementia.

To conclude, while there are clear challenges I believe, based on the evidence I have outlined, the Government is committed to supporting older people who want to live independently in their homes and communities. People assume that politicians know everything or that we are experts on everything. Over the years, I have had excellent secretaries who assisted anyone who wanted to avail of home help or the fair deal scheme.

My mother received home help and then went into a nursing home. Like everybody else, I had not dealt with the system. I remember the help I received from the staff in Roscommon about how to apply for the fair deal scheme and what exactly I needed to do. I want to thank the women, in particular, who worked in the public service there and were very helpful. I would tell anybody that the advice and assistance they provide is great. I never thought I would need to avail of such help, but the help was very encouraging. I wish to pay tribute to the staff in Roscommon.

I again welcome the Minister of State. As a member of the all-party group on dementia, under the tutelage of Senator Kelleher, I welcome that the House is doing something about this issue. My office will attend the launch of the Alzheimer's Society of Ireland's prebudget submission and I appreciate all the work the Minister of State has done and continues to do on this issue.

As a nurse, I believe hospitals are the last place for those diagnosed with dementia or in need of care. It leads to a more rapid decline, longer periods of confusion and crippling immobility over years. It is not a positive ageing strategy.

I want to say outright that Sinn Féin has worked extremely hard on this issue, in particular my colleague, Deputy Caoimhghín Ó Caoláin, who produced a booklet in recent months. It gives a comprehensive overview of the recommendations on home care services and dementia care. I believe the Deputy's recommendations deserve proper consideration. He has called for the issue to be addressed for over two years. The proposals would free up reliance on our acute hospitals, which is an important point.

I have consulted with Age Action and it told me in no uncertain terms that there is a crisis regarding the numbers waiting for access to care services at home and a significant disparity across the regions. I hope the motion is the beginning of addressing these problems.

I also spoke to a manager in a home care provider. He sees the urgent need to address the inequality of service provision and the distinct and unique care needs for those suffering with dementia. We need to be absolutely clear that increased investment does not go towards wholly private home care companies. We need to support not-for-profit services which are extremely stretched and are trying to do their best to provide other services, such as meals on wheels, which are embedded within communities.

Such organisations are very concerned about and cognisant of giving carers a fair wage for the outstanding and, at times, very difficult job they do. I have grave and serious concerns about private companies, and there are ethical considerations, given the recent example of residents who could not, would not or were unable to avail of social activities being charged €5,000 for same in nursing homes. They were billed for services regardless of whether they availed of them.

We know private nursing homes cherry-pick residents. They squeeze every cent out of vulnerable people. They rely on a time-to-task method of working, which dictates times for tasks. There is no value placed on human interaction, which is the most therapeutic intervention and the most effective care for our elderly.

When Fianna Fáil calls for certainty of entitlement, that needs to be a bit stronger and protected within legislation. I and my colleagues are working on this issue. I presume we will get the support of Fianna Fáil when we are able to debate the matter. Care is not just for those with dementia. Rather, it is also for those with MS, mobility issues and moderate to severe disabilities. It is important we examine those issues.

We have concerns regarding the nursing homes support scheme being extended to include home support. I do not think that is possible because the scheme is designed specifically for long-term residential care. Currently, supports, though inadequate and underfunded, are provided free of charge to the end beneficiary based on an assessment of need. Sinn Féin believes they should continue to be provided on this basis.

I ask the Minister to address two points. The Minister of State, Deputy Helen McEntee, the previous Minister of State with responsibility for this area, called for a public consultation in January with a six-month deadline. Is there a report and, if there is, could the Minister of State share it with the House?

The Assisted Decision-Making (Capacity) Act is long overdue. It will address the needs of vulnerable people. Those people, and their advocates, will be able to have a choice of where they go. If a person does not want to go to a nursing home or hospital, but instead wants to go home, we, as legislators, and the Government have a responsibility to provide for that. Perhaps we should do things first and not wait to be threatened by legislation. We should involve ourselves in embracing older people and those with disabilities who prefer to stay at home and live in their communities.

I welcome the motion, which focuses in particular on people with dementia. I would also like to welcome the new Minister of State and look forward to working closely with him, as I did with his predecessor.

As well as a growing population of older people, there are almost 55,000 people living with dementia in Ireland, 63% of whom live in communities. Most of us know someone, such as a family member, relative or neighbour, for whom this a reality. The numbers are set to grow to 68,000 people in ten years' time. Dementia is a significant challenge for people, their families and society as a whole.

People with dementia need a wide range of supports which reflect the complex and changing needs of the condition. They need an early diagnosis and the support of a locally based dementia adviser, of which there are only eight. We need one for every primary care area, which would be 90. In order for people to live well with dementia they also need access to a range of services as the condition advances.

Home care is critical. It allows people to stay at home, remain part of their communities and do all the things we know are good in order to enable them to live well with dementia. Familiarity is critical because people often do not want to go into a respite centre, even for a fortnight, because it is too disorientating. People prefer to be at home in the place they know. Dementia-specific home care is consistent and continuous. People with dementia cannot have services which involve chopping and changing.

Sometimes things take longer for those living with dementia. A person may require social supports. They may not need to be fed or dressed, but they might need someone to pop in to remind them to cook because they may simply have forgotten to do so. There is strong evidence that low-level and flexible support in the home, in particular for those living with early and mid-stage dementia, can be very successful in keeping people living well in their own homes.

Home care is vital in supporting dementia family carers. The social and health care system relies on family members to provide care for people with dementia, and this can often be burdensome and stressful if they are left to go it alone. One of the main reasons people burn out and people with dementia have to enter long-term care is because of family burnout. A report was published by Trinity College last week, the De-Stress report, which told us this, as if we did not know it already.

We know that the majority of people with dementia want to live at home in a familiar environment and remain linked to their communities. That was highlighted last year in a report published in July by UCD, Age Action, the Alzheimer's Society of Ireland and the Irish Association of Social Workers. It was also confirmed in last year's pre-budget submission from the Alzheimer's Society of Ireland, which I launched. There were some 25,000 signatories to it.

We must listen to people. I know that there is a consultation process, but we should not have to wait for it to take place as we know what is involved from what people are telling us. Not only has the case and preference for home care been proved, it is also cost effective and cheaper than residential alternatives. The availability of a home care service enables the health care system to work effectively for patients’ timely and appropriate discharge. People get worse when they go into hospital. They lose functionality and often do not come out again. It is not the right place for them. While it is official Government policy to support people to enable them to stay at home, it is not happening. One need only look at the relative spend between long-term residential care and community-based care. Between 2009 and 2015, funding for residential care was increased by €84 million, whereas funding for home care decreased by €11 million. One possible explanation and an issue which must be addressed is that there is no statutory entitlement to home care. It is discretionary. When the budget runs out, it runs out. However, there is an entitlement to residential care under the nursing home support scheme. I support Deputy Willie O'Dea's Bill to have it put on a statutory footing.

Last October I was delighted to set up the first all-party Oireachtas group on dementia. The group is co-convened by me and Deputy Mary Butler, while Senator Máire Devine is an active member. We hosted high-level round table discussions on home care which the then Minister of State attended. Again, we received the same message. However, we teased out the issues involved. The core issues can be boiled down to three Rs, namely, regulation, as proposed by Senator Colm Burke, resourcing of hundreds of millions of euro and the right to home care. Reflecting on this, the all-party group on dementia made its submission to the Citizens’ Assembly, with a right to home care being one of the five recommendations. Although home care is provided in different guises, it is not regulated. Given its nature and that the most intimate care provided in the home is often unsupervised, there is a strong case for regulation which is what Senator Colm Burke's Bill would do. Anybody can set himself or herself up as a home care provider. One could be a criminal today and set up as a home care provider tomorrow. That is not good enough for the vulnerable persons in question.

On resourcing, I was glad when the Sláintecare report acknowledged the need for home care as part of a modern health system, although I believe the report vastly underestimated the level of investment needed. If we are serious about building a home care system, we need to lay out a funding path which will lead towards an annual €1 billion investment in home care. It would be money well spent. The active care report published by DCU yesterday showed that we spent more on health and social health care per person among the eight countries it examined but in the wrong areas such as emergency hospitalisation rather than meeting people's needs and preferences.

As the motion calls for, we also need full implementation of the national dementia strategy. I am particularly interested in the 500 intensive home care packages which are meant to reach 130 people. What are the up-to-date figures? On a right to home care, I am aware that the outgoing Minister of State promised consultation. It would be great to hear the details from the Minister.

The issue of home care for people with dementia has been raised time and again. I receive calls from Members of the Oireachtas who want to know how they can secure a service. Recently, I was speaking to Deputy Anne Rabbitte about a 101-year old person who wanted to stay at home but who had to beg for a home care package. It is time for the Government to listen and, most importantly, act. With the party proposing the motion, I hope it will support the Alzheimer Society of Ireland’s 2018 pre-budget call for a €35 million investment in home care for people with dementia, which must be built on year on year. It is not about turning up at events tomorrow, taking a photo, tweeting but doing nothing to secure a meaningful and realistic investment and system designed for a national infrastructure of home care services, as is common across Europe. The party or the Minister who has the foresight and the courage to build a high-quality, equitable infrastructure of home care services, like that of roads, railways and schools, will actually have a place in history. We remember people like the former Minister for Finance, Deputy Michael Noonan, who helped us to turn the economy around and Donogh O’Malley who gave us the universal secondary education system. The Minister and the party that do this, not just talk about it, turn up at events and agree with everybody, will be well remembered for a long time. That is why I am supporting the motion and urge every Member to support it too. I am supporting it only as a stepping stone to a meaningful commitment to building home care services on the scale needed to ensure Ireland will be a humane place for people with frailties and conditions, as well as a good place in which to grow old.

I welcome the Minister of State. I am not following him, but this is our third time to run into each other today in various debates. This is an important issue in how we plan health services. While over €760 million has been put into older people services, of which €373 million is for home care provision, it is a service we will have to continue to grow for several years. Over 10.5 million home help hours are provided annually, but there is still much work to be done. Over 16,750 home care packages are provided, but there are many more people looking for them. We need to ensure those who want to do so can stay at home and that the necessary supports will be available without them having to go into a nursing home.

We may have major challenges in nursing homes provision. There are over 23,000 people participating in the fair deal scheme. If we continue to have a growing number of older people in nursing homes, either under the fair deal scheme or in community hospitals, we will require something like 40,000 beds within ten years. There is a population of 600,000 who are 65 years of age. Within ten years that number will reach over 1 million. That will have knock-on difficulties for hospital services in that 5% of all hospital beds are occupied by the over 65s. Accordingly, if want to get people out of hospital fast, we have to ensure there are adequate facilities available.

One of the issues at which we need to look also is the provision of step-down facilities. In many cases, people want to go home, but they are not well enough to do so, even with home care provision. They need a step-down facility, an intermediary between hospital and going home. This is another area we need to examine seriously. I know that the Department has examined how home care is provided in other countries such as Germany, the Netherlands, Sweden and Scotland and is working to ensure we can provide a comprehensive forward plan in this regard. I noticed some criticism of nursing homes in some contributions. In the past 24 hours I have been contacted about three nursing homes which are closing down, not because of HIQA inspections or health care concerns but due to their financial viability. Not long ago, a Member complained in the House about the rate of pay in nursing homes. Nursing homes have costs to meet such as insurance and rates. I heard of one nursing home, the rates bill of which had gone from €50,000 to over €100,000 in less than 12 months. They have all these hidden costs to meet. This is about home care provision, for which we need to plan carefully.

Senator Colette Kelleher is right is about the regulation of home care providers. There are over 30 companies providing home care packages, but they are self-regulated. While it also involves the Health Service Executive, HSE, it is not adequate. In this House we introduced the Health (Amendment) (Professional Home Care) Bill 2016 which had stemmed from the Law Reform Commission's report which had set out clear guidelines for how we should move forward in this area. It is important the Department also take it on board.

I believe that we need to fast-track the planning on how we now fund home care. The number of people over the age of 65 is increasing. That does not mean that because someone reaches 65 years of age, they suddenly require a home care package. Also, the age profile of the over 85s is going to grow dramatically. Some Senators have referred to that figure already. It is important, therefore, that we plan.

There is an interesting case of someone I know very well that goes to show how well home care can work. The person is 95 years of age, confined to a wheelchair and living on their own. As a result of home care, they can live quite safely and securely on their own. Under absolutely no circumstances does that person want to go into a nursing home setting. With the help of the people providing home care, they can plan to go out shopping, to the post office or to the bank when it suits. It is still working out. Even though there is a home care provider coming to the person something like four times a day, it is still far cheaper that the person being in a nursing home full-time. It does work. There are many people in nursing homes who would love to be back in their own homes but, unfortunately, the supports they need are not there.

The one other thing we need to keep in mind is that it will be a major challenge in rural areas as regards trying to get people to provide that home care. That is something we need to seriously consider. How do we deal with rural areas in which there has been a decrease in population, but there are many elderly people and many people who want to stay in their own areas and their own homes? How do we meet that challenge? That is another issue we have to face.

I thank the Members for tabling this motion and for having this debate. We need to plan, make sure that it covers all the angles and ensure there is maximum protection for the person receiving the home care.

I thank the Minister of State for being present. I did not know whether to laugh or to cry when I saw this motion. When I heard that Fianna Fáil believes that the best option is for people to be kept in their own homes, I thought of how I longed to hear that sentence in 2008, 2009, 2010 and 2011 when we led campaigns to try to stop Fianna Fáil from socially and economically ruining the system that was in place for home help. I have a question for Fianna Fáil today. Is it going to apologise for the savage cuts it made to home help, community hospitals, community nursing homes and primary care? That is exactly what Fianna Fáil did. I would really appreciate it if someone from Fianna Fáil could stand up and say that I am wrong. However, I know that between 31 August 2009 and 31 August 2010, in Mayo alone, Fianna Fáil cut 32,000 hours of home help from the most severely disadvantaged and vulnerable people across the county. That is not me saying that; it is an absolute fact. Fianna Fáil privatised the home help system, sacked swathes of home help workers, put them into private care and told them that they could no longer work under the HSE. They told elderly people that they were not even worth one hour of home help - it had to be 30 minutes or 45 minutes and it could not be the hour.

I do not have dementia so I remember trying to fight for the 99-year old man in Westport who had two hours of home help a day. Fianna Fáil said that he could not have two hours and could not possibly have an hour in the morning and an hour in the afternoon. That could not be possible under Fianna Fáil. It could not be done. Those are the kinds of fights I had for people in the community. That is why I longed to hear the line that Fianna Fáil believed that the best option for people was to be kept in their own homes. It is very difficult.

I hope Senators can understand that it is very difficult for me to stand here today and think that Fianna Fáil is going to be the saviour of home help, community care and all of that. I just do not buy it. Fianna Fáil actually made family carers weigh out the soiled nappies of the people they were caring for because they thought they were using up too many nappies and could save some costs through that. That is what Fianna Fáil did. Again, this is not me making it up; it is very well documented. This is why I cannot sit and listen to this. The closure of 40 beds in the hospital in my own community in Belmullet, despite a major community action group effort, was insisted upon by the Fianna Fáil Government. It would not lift the moratorium it imposed to put some nurses and staff in to care for those beds. That is why the people now do not have the respite care they need. That is why they cannot keep their elderly people in their own homes because they cannot even get the week or two weeks during the year because the beds are no longer there. It was an ethical decision made by Fianna Fáil and carried on by Fine Gael, because although Fine Gael did not do it to the extent that Fianna Fáil did, I know that in Mayo alone there have been cuts of a further 9,000 hours or so to home help hours to complement the 32,000 hours cut by Fianna Fáil. They would not listen to the communities, the carers or anybody else.

Primary care is connected to this issue. Fianna Fáil set up the models of primary care in 2001 and there were ten pilot projects across the country, but it would not resource them. It would not put in the resources so that it could do what it said it would do on the tin. That is why, as I speak, we have elderly people in beds - if they can even get them - in the nursing home in my area who are crippled because they have not got a physiotherapist to give them the treatment they need. They are physically crippled. They cannot go out into their own homes because they do not have that physiotherapy there and they cannot have it in the hospitals. What has been done is inhumane and it was started by Fianna Fáil and continued by this Government.

I can only draw the conclusion that Fianna Fáil suffers from selective amnesia around this issue. I will not say dementia and I will not say Alzheimer's. Are we now to believe that Fianna Fáil has had a conversion on the road to Damascus? I want to ask why. I want an explanation on behalf of the people Fianna Fáil treated in this way. I believe it owes those people an apology. Does Fianna Fáil now admit that it was wrong? Does Fianna Fáil now admit that its policy on home care, primary care, the closure of district and community hospitals and the privatisation of nursing homes was wrong?

Naturally, Sinn Féin will support this motion, but we are certainly not fooled by the disingenuous attempts of Fianna Fáil to cod the people into thinking that it would not implement the savage cuts was it to get the opportunity again. They inflicted these savage cuts on the most vulnerable people in our society who are dependent on this home care. They persecuted carers through cut after cut after cut. Carers are the most neglected group in our society. I commend the job that is done by carers in our society because the 24-hour care that they provide is holding up the whole of our society. I also commend the dementia action groups, other action groups and the home help action groups who fight for care for these people. It must be hugely difficult for these people to work inside that system. I know many people who actually had to leave because they could not bear it. They could not bear to see the suffering in the communities and not have the resources to be in a position to do something about it.

The Minister of State and his Government are now responsible for providing adequate resources to ensure the immediate implementation of the national dementia strategy. I ask him to do that as a matter of urgency. I ask him to reverse the cuts that were made by Fianna Fáil and I ask him to do it as quickly as he possibly can because we are talking about a very vulnerable group of people who are in the late stages of their lives. In many cases, there will not be a chance of a long-term strategy. Resources have to be put in immediately to protect the most vulnerable in our society. What does it say about us as a country and as a Republic? There is no point in us going out and spending loads of money on commemorations and everything else if we do not look after the most vulnerable in our society.

I know the people who are presenting this Bill tonight and my argument is certainly not personal to them.

We need to learn from them and to bring this forward. Unless people admit to having made major policy mistakes in the past, we are not going to correct them.

I welcome the Minister of State to the House. I will be supporting the motion. This is an important issue and one that has been crucial to me in my campaigning life. I had the honour of working with Older and Bolder, with other organisations across Ireland and with thousands of older people in the Make Home Work campaign. It is so clear whenever we talk to older people that, in the vast majority of cases, they want to be able to live in their own homes and communities and to continue contributing to those communities. It is very important to recognise that those older people who are living at home often play a vital role in their families and communities. Even people on the road to dementia or Alzheimer's disease still have contributions to make and roles to play. It is very important to recognise that home care benefits, not only the individual, but also the social fabric of our communities.

We need to acknowledge the mistakes of the past in the House. This is important and my colleague, Senator Conway-Walsh, has spoken about this. The public service recruitment embargo was a blunt tool which had consequences across all kinds of areas. We need to collectively acknowledge that and recognise the damage it caused. We also need to recognise the damage caused by the focus on privatisation in the area of home care work.

I welcome the fact this motion recognises the problem of the time-to-task approach that was brought in. When I worked with Older and Bolder and with older people across Ireland, we heard again and again of people who had been moved from two hours to one hour to half an hour of home help. Suddenly they only had five minutes to shower. They were not eating as well. The quality and nutrition of what they were eating and, crucially, the quality of contact they received was changing. We need to have a rights-based and needs-based approach to care. This begins with recognising the care needs and rights of the individual. I welcome that aspect of the motion.

Having campaigned on this issue in the past, I have to acknowledge the fact that this matter has been paid an extraordinary amount of lip-service but has been allowed slide again. The very fact we saw €11 million less spent on home care shows that as an option it seems to be becoming less viable for people. When I worked with Older and Bolder I also visited into residential care homes and spoke to older people living there about the options they felt they had. There are people in those homes for no other reason than that they needed two hours of care a day. They needed somebody to help with the cooking, to help them into bed and to help them at crucial points in the day with simple tasks. That simple support was not there for them. There are people in residential care homes who should not be there. It is important people have choice, and I want to emphasise that. This week we saw a case of a couple separated over access to a residential care home. We need to recognise that older people have the same rights to relationships and to a full life as all citizens have.

I am happy to be a member of the all-party Oireachtas group on dementia and my colleague, Senator Kelleher, who established that group has played a key role in this. I support the motion but, to be honest, I would like it to be a little bit more ambitious. It speaks about addressing inequity and it asks for some positive aspects of the scheme to be extended. I would like to hear from those proposing this motion that they will be supporting the regulations pushed for by Senator Kelleher and by Senator Colm Burke. If we are to have a collective effort on this, there needs to be consistent pressure in the debates and negotiations around resourcing in this area. Fianna Fáil will, of course, be there, as will Fine Gael. Resourcing has to be addressed and the rights-based approach has to be recognised.

I support this motion but it is important we do not simply have a situation where each party has something it can tick off in terms of what it has achieved on home care. What we need instead is a commitment from all sides to deliver and transform the way we address this matter. The Minister of State is inheriting a commitment to a consultation on a statutory entitlement to home care. I know from the Make Home Work campaign, we know from our National Positive Ageing Strategy and we know from every conversation we have had with experts and with citizens that there is a demand for care in the home. I urge the Minister of State to make that consultation sharp and efficient, to turn it around and to deliver it so that we have that statutory entitlement and a scale-up in investment.

One thing which I very much regret is missing from this motion is the question of quality employment in the home care area. If home care is to become a viable option we need to recognise that this is not simply an area of investment. It is one of the areas which delivers the highest return of employment and which has the most potential to provide employment in every corner of this country. Those working in this area should be paid well and have decent conditions. That allows them to become active economic agents who can spend and invest in their local communities. This is one of the most job-intensive areas and it is growing right across the world. I urge the Minister of State to ensure this will be an area of high quality investment and that there are high quality standards for those working in the area as well as for those receiving home care.

Over 1,000 older people came to events around the country to contribute their ideas to the National Positive Ageing Strategy. I would like the Minister of State to ensure that, as the National Dementia Strategy is implemented, we also see the National Positive Ageing Strategy driving forward.

As part of that collective work, I hope the House will support the recognition of care credits within our social protection system, in particular for the 48% of care that is provided informally by family members. That is also part of the picture. Part of what allows these people to continue providing care is that they have home care support.

Before I bring in the Minister of State, I would like to welcome to the Visitors Gallery former MP and former leader of the SDLP, Alasdair McDonnell. He is very welcome. He is joined by some of his supporters and advisers who are also very welcome.

I thank the proposer and seconder of this motion for bringing it to the House, as well all the contributors who have taken the time to partake in the debate this evening. I thank the Senators for the opportunity to speak about home care provision and our work in supporting those who live with dementia and their families. I agree with many of the sentiments expressed in the motion and it largely reflects work that is well under way and ongoing in the Department. The overarching policy of the Government is to support older people to live in dignity and independence in their own homes and communities for as long as possible. Home and community supports are a key mechanism for enabling older people and indeed, people with dementia, irrespective of their age, to do this and for facilitating their discharge from acute hospitals. The Government’s priority is to ensure that our older population is looked after, supported and protected.

We are living longer than ever before, and thankfully the signs are that this trend will continue into the future. This is something to be celebrated and embraced. We must also be cognisant of the fact, however, that our ageing population brings about challenges across a wide range of areas. We know that there are currently about 55,000 people living with dementia in the Republic of Ireland. Approximately 4,000 people are newly diagnosed each year. The prevalence of dementia is set to increase as our population ages, and the challenge facing us is to support those who develop dementia and their families as much as we can.

Although it is not the only support, a major aspect of the support provided to our older population and to those living with dementia is through the provision of home care services.

This year the overall funding for services for older people is €765 million. This includes about €367 million for the direct provision of home care. A further €9 million supported by HSE and Atlantic Philanthropies will provide intensive home care packages for people with more complex needs. The HSE’s national service plan provides for a target of 10.57 million home help hours, 16,750 home care packages and 190 intensive home care packages. The HSE is progressing a range of measures to improve home care provision overall, to standardise services nationally, and to promote quality and safety. This includes a procurement framework for home care services which came into effect in 2012 and which has recently been repeated in 2016. Providers are monitored through service level agreements with the HSE. National guidelines for the standardised implementation of the home care package scheme, which set out standard procedures for providers of home supports were introduced in 2011. Activity in regard to home care is monitored on an ongoing basis, to ensure that activity is maximised relative to the individual client’s assessed care needs, and within the available resources for home care having regard to demand throughout the year.

Arrangements for home care have developed over the years with a significant local focus and there is variation in access to services in different parts of the country. It is also accepted that there is considerable demand for home support services over and above existing service levels. The programme for partnership Government includes commitments to increase funding for home support services; to improve these supports; to introduce a uniform home care service so all recipients can receive a quality support, seven days per week, where possible; and to review the management, operation and funding of national home-help services. I am committed to following through on all of these matters. In order to help make this happen, my Department is developing a new scheme that will improve access to the home care services that people need, in an affordable and sustainable way. My Department will also introduce a system of regulation for home care so that the public can be confident that the services provided are of a high standard. It is my view that we need to address the home care challenges currently being faced by ensuring that the new home care scheme operates in a consistent and fair manner for all those who require it and is underpinned by effective regulation. However, a significant amount of detailed preparation needs to be done before final decisions are taken on these issues. There has already been good progress in this regard. A Health Research Board review, commissioned by my Department and published in April provides an evidence review of the home care systems that are in place in four other European countries. This review will inform the debate and future consideration of approaches to formal home care financing and regulation here in Ireland.

Another important step in the process is a public consultation process which I will be launching shortly. This consultation will allow all those who have views on home care to have their say, including older people themselves, their families, and healthcare workers. This consultation will help us find out what people think about current home care services and enable people to give their views on what the future scheme should look like. The development of a statutory home care scheme is an important step and the concerns raised in this Private Members' motion form part of the examination of the future scheme.

While I have outlined the importance of home care supports in general and the future work that is being prioritised with regard to a home care scheme, it is also important to reflect specifically on the issue of dementia and work that is happening and needs to continue to develop in order to support those living with the condition. Far too many people feel that the life of a person diagnosed with dementia is effectively over. This is not the case. With the right understanding and supports, where needed, life is far from over for a person diagnosed with a dementia.

Recognising the particular challenges faced by people with dementia, their families and their carers, the Government published Ireland’s first national dementia strategy in December 2014, with the objective of increasing awareness, ensuring early diagnosis and intervention and developing enhanced community based services. The strategy contains 14 priority actions under five headings: leadership, better awareness and understanding, timely diagnosis and intervention, integrated services, supports and care for people with dementia and their carers; and training and education. The strategy also contains 21 additional actions to be prioritised for implementation as resources become available.

In parallel with the strategy, the Department of Health, the HSE and the Atlantic Philanthropies agreed a co-funded national dementia strategy implementation programme to implement specific elements of the strategy. This implementation programme represents a combined investment of €27.5 million, with the Atlantic Philanthropies contributing €12 million and the HSE €15.5 million. Key elements of the initiative included the establishment of a national dementia office in the HSE and the roll-out of a programme of intensive home care packages for people with dementia. Some 217 people living with dementia have benefitted at an average cost of €950 per package per week. Dementia-specific intensive home care packages are now being provided to around 122 people with dementia at any one time, the provision of additional dementia-specific resources for GPs and primary care teams. The PREPARED project based in UCC is upskilling GPs in dementia diagnosis, and will train GPs and primary care teams in the management of dementia; and measures to raise public awareness, address stigma and promote the inclusion and involvement in society of those with dementia.

The National Dementia Office was established in early 2015 to co-ordinate implementation of the national dementia strategy across the HSE, including the funded elements of the implementation programme. The office is led by a general manager and has recently recruited two full-time project officers, with a consultant geriatrician joining the office on a part-time basis from October. The office has a key role in the implementation of the dementia strategy and considerable work is ongoing to advance actions under the strategy. For example, dementia training and education programmes, delivered under the strategy, are targeting a variety of groups including the general public, carers, public-facing staff, healthcare and nursing staff, and senior managers. To date over 5,000 staff have attended dementia awareness programmes across community and acute services. The HSE and the Alzheimer Society of Ireland have undertaken an audit of dementia-specific services for people with dementia and their carers currently available across the community health office areas. The results have identified gaps in services and will inform future service developments by the HSE. The National Dementia Office has just commenced a year-long post-diagnostic supports project which is looking at the information, emotional and psychological supports needed by people who have received a dementia diagnosis, and their families. Provision of supports at this stage of the condition will help people to understand their condition and develop coping strategies.

These are just some of the examples of the work underway to deliver on the implementation of the strategy. Considerable further work is required over the next number of years to implement the strategy and I am committed to this. My Department and the HSE are working on a mid-term review of the implementation of the national dementia strategy which will be published in the autumn and will identify the achievements so far and set out the further work that is required to implement the strategy over the next 12 months and beyond. The resources required for the ongoing implementation of the strategy can only be considered in the context of the Estimates and budget process. The mid-term review will assist In identifying further actions required and will be helpful in the context of budgetary considerations.

I will now address some of the specific queries which were asked earlier. I hope I will do them justice. Senator Devine asked specifically about the capacity Bill. The decision support service office is currently advertising. That needs to be set up but work is ongoing before it can be fully commenced. Progress is being made. It is a complicated area because a number of different Bills are impacted by it. I am happy to discuss it with the Senator afterwards. I share her ambition to see the capacity Bill through, but there are a number of complications in the background that mean it is taking more time than we would wish. I am happy to discuss that in further detail with her.

A number of Members asked about the home care consultation. I wish to confirm that I will undertake to have that consultation launched within a week of being here. Senators will appreciate that I am only a week in office and I am trying to find my feet and get on top of all these issues, but this is something I really want to commit to and am anxious to get it up and running and into statute. We need the consultation and I will launch it within a week. I take on board Senators' observations on the need to keep it sharp, focused and effective and that it should not be let run on and on. I will bear that in mind.

I think I answered Senator Kelleher's question about intensive home care packages in the course of my remarks. Senator Colm Burke made a good point about rural areas and staff. It is a challenge I am well aware of from my own constituency. It is not merely resources but also having people available to provide the service. I take on board his comments about quality employment for these people. It is important that we get it right. The fair deal scheme, for good or ill, is a good scheme and works well. If we can replicate that and mirror it with a scheme similar in quality, which serves all people, including employers, the people who benefit from it and their families. It is worth getting it right but I do not want that to become an excuse for delay and making the process longer than it is.

Sorry, and regulation and oversight, of course, which are very important part of it.

I thank the Senators for the opportunity to share with them some of the actions that are ongoing and to take on board the points here as I find my feet and try to grapple with moving this which will be my top priority as Minister of State.

I thank the Minister of State and call on Senator Catherine Ardagh to conclude the debate.

I thank the Minister of State for coming to the House and I thank all of my colleagues who have contributed. It is not personal, but the fact Senator Conway-Walsh gave Fianna Fáil a lecture was quite disingenuous when all we have to do is look up North at the shambolic home care services package provided there.

It is not shambolic. The Senator is making that up.

People are getting home care packages in 15 minute segments and Sinn Féin is giving us lectures. It is outrageous.

Senator Ardagh without interruption. She did not interrupt Senator Devine.

That is the Tory Government.

Why should we apologise? We have asked for an apology.

If newspaper reports are to be believed-----

Focus on your own history.

I understand a long-standing member of Sinn Féin is being bullied so the Senators should really start-----

Senator Ardagh through the Chair and without interruption. We have new visitors and I am sure they are not impressed by Senator Devine.

Sinn Féin does not have a monopoly of being the fairest and most humane party. We are all on the same page. We are all ad idem that home care packages are the way forward. Any cuts to services are regrettable.

Is that an apology?

Any cuts to services are regrettable. That is a reasonable statement. Senator Devine should look at her own party and recent media reports that there have been allegations of bullying against long-standing members of that party.

Is that relevant?

Those in glass houses should not-----

That is not relevant.

We might stick to the topic.

The Chairman should rule it out of order.

I am just about to ask Senator Ardagh to stick to the debate.

I thank the Minister of State and I look forward to the support we might receive for the Bill.

I am very sorry for Senator Ardagh's troubles.

Question put and agreed to.

When is it proposed to sit again?

Next Tuesday at 2:30 p.m.

The Seanad adjourned at 6.05 p.m. until 2.30 p.m. on Tuesday, 4 July 2017.