Home Care Services: Discussion

The purpose of this morning's meeting is to consider home care services. On behalf of the committee, I welcome Ms Celine Clarke and Ms Audry Deane of Age Action Ireland; Mr. Liam O'Sullivan, Mr. Pat McLoughlin and Ms Joan Carthy representing Care Alliance Ireland; Mr. Joseph Musgrave and Mr. Ed Crotty of Home and Community Care Ireland; and Mr. John Dunne and Ms Clare Duffy from Family Carers Ireland. I thank them for coming.

I draw the attention of witnesses to the fact that by virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of their evidence to the committee. However, if they are directed by the committee to cease giving evidence on a particular matter and they continue to so do, they are entitled thereafter to only a qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given and they are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person, persons or entity by name or in such a way as to make him, her or it identifiable.

I advise witnesses that any opening statements made to the committee may be published on its website after this meeting.

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

I ask Ms Audry Deane of Age Action Ireland to make her opening statement.

Ms Audry Deane

As the largest representative body for older people in Ireland, Age Action is delighted to come before the committee to give a brief overview of home supports, the current context, deficits and impact on service users and their families, which is critical. We will conclude this short presentation with our key requests, which align with the Home Care Coalition, a grouping of 22 national organisations which advocate and engage with the Department of Health on this critical area of health and social care policy. We know that the deficits and challenges facing the Irish health system are complex and multifaceted, but from our experience and our direct work with older people and their families across Ireland, we are aware that older people do not receive the quality home support services they need to maintain their health and well-being and to allow them to continue to live independently within their homes and communities, and to avoid or even delay hospital and residential care stays. Home supports are critical for older people. It is clear from our work that families are not getting adequate quality, affordable home care supports. The Citizens' Assembly has dealt with this issue and the findings were clear. Some 99% of members wanted the Government to expedite the current commitment to place home care on a statutory footing. We now have the beginning of that emerging and are working closely with the Department to develop that. A further 87% of people want an increase in public resourcing to ensure this is delivered appropriately.

We all know the demographic challenges. Life expectancy is rising and people aged over 65 now can expect to live well into their 80s, with two thirds of these years being lived disability-free. However, as they age, the risk of disability increases. Some 72.3% of the population aged 85 and over will have a disability by 2038. I am not here to labour this. We all know the statistics and they are stark. The cohort of people over 85 is projected to double in the next 20 years. By 2030, the cohort of people over 65 will increase by 59% and the cohort of those over 85 will increase by more than 95%. This creates capacity challenges and has been well-signalled. We have had two key reports. The Economic and Social Research Institute, ESRI, report on healthcare projections noted that the demand for home care packages will increase by between 44% and 66% by 2030, and the demand for home help hours will increase by between 38% and 54%. The health service capacity review also flags this. Various numbers are included in it and are in our presentation. Looking at just home care packages, which the committee understands are a critical component of wraparound care for people, these will have to increase by 70% from 15,600 a month to 26,600. There will be a need for an additional 7.2 million home help hours by 2031.

Unmet need is the crux of this. Due to the dramatic demographic challenge, the projections for unmet need in home care supports are a cause of deep concern. Various research puts the level of unmet need at varying levels but it is at least between 26% and 50%. This will cost between €120 million and €205 million over the first five years of Sláintecare, which we will come back to because it is the blueprint for how we should reform healthcare systems in the country. A report by our colleagues in Care Alliance Ireland published just a few weeks ago gives very important information on the length of waiting times for home care and the gap between assessed need and the service that the person ends up getting. This report is sobering reading as, despite sending a freedom of information request to all nine community health organisations, only three responded fully to the questions asked, two gave partial information and one refused outright after an initial acknowledgement. The report found that the average time spent on a waiting list for home care supports for non-priority cases was at least 3.3 months, with the gap between assessed need and actual service provided being 15%. More worryingly, the report found an inconsistency in the approach to measuring and documenting unmet need. We in the Home Care Coalition believe that it is a cause for grave concern when the statutory health provider does not have a uniform approach to measuring, prioritising and allocating need. The figures on unmet need vary from month to month. Various reports give various statistics but we know that at least 6,100 people are assessed as in need of home care, waiting for an initial service. As I said, these figures vary.

Age Action Ireland is aware that the numbers receiving home supports in the community do not accurately reflect current and future need. Some older people opt not to reply, as they know that service provision is not sufficient and will not meet their needs. We are also concerned at the lack of data on private home care provision in the country. We know that the variety of negative consequences can badly affect the health and well-being of older people and their families. These range from minor consequences such as feeling unhappy because housework is not done, to major consequences, such as being unable to eat when hungry. Older frail people often sustain an independent lifestyle at home if they can receive appropriate, timely, quality physical and psychosocial supports. The absence of available home supports impacts fundamentally on the range of choices available to old people. Without access to home care supports, some older people are forced to move to a residential care setting, which is often not their first choice. This undermines their human right to live with dignity and independence.

On funding, as part of the Home Care Coalition, we know we need a large injection of funding into home supports to enable the service to at least meet its yearly growth in service users and to return to 2008 levels of service provision from before the austerity cuts. I have provided a graphic to the committee on research and will not go into it in detail. Members can see a significant disparity between the nursing home support scheme, which received €962 million in funding in 2018, catering for 23,500 older people in nursing homes, 4% of the cohort, while the home support element of care, including the winter initiative, receives €430 million, which covers more than 50,000 people.

That encompasses home care, home help hours, home care packages and intensive home care packages. One can see there is a big disparity.

The committee will be aware that there are serious challenges facing the planning and provision of home supports. The deficits have a serious impact on the quality of choices people make, if indeed they are able to make any choice, about where they will receive the care they need.

In summary, we know the following. The average home care package is now six hours a week and not, as we all thought previously, ten hours. It is now more difficult for over 60s to access home support than it was in 2008. The waiting lists still persist. There are now fewer hours being spread more thinly per client every week, with an increase in the provision of short 30 minute slots. There is not much one can achieve in 30 minutes.

There is an absence of legislative entitlement to home supports. There is a postcode lottery, which quite frankly is shocking, in service provision, and there is a lack of transparency and accountability. There is limited access to packages due to chronic underfunding and the eligibility criteria for supports remain unclear. Sláintecare is working hard on that issue with Ms Laura Magahy.

Overall lack of provision of supports is the key issue. At Age Action, our helpline constantly get calls from people needing to remain in hospital or who need to go to a nursing home because there are no supports at home, to where they want to return. This is a serious deficit. We face a steep increase in demand due to our population growth.

There are two clear messages I need to leave with the committee today. All of us here are asking for an increase of at least 10% in the home supports budget in each year until the statutory scheme comes on stream. We are working closely and innovatively with the Department on how we should design and deliver this service but it is not here yet. According to the Sláintecare implementation strategy, it will take three years to get this scheme in place. To maintain access and to meet the demands of the expanding demographics, funding has to increase by at least 4% to 5% per year.

Age Action Ireland's last really critical issue for the committee, as elected members, to take away is that the new statutory home care scheme must be underpinned with robust eligibility legislation and it must have the quality standards monitoring framework. Eligibility without capacity will not work and needs will not be met. The development of a robust equitable funding model will necessitate an honest conversation where collective societal values must be articulated and an agreed approach to the generation of funds to support the scheme must be reached. Age Action Ireland looks forward to working with the committee to make sure older people's needs for home supports are adequately addressed.

I thank Ms Deane. I now invite Mr. Liam O'Sullivan of the Care Alliance to make his opening statement.

Mr. Liam O'Sullivan

I thank the joint committee for the invitation to attend this morning. I will share my time with my colleagues from the Alzheimer Society of Ireland and the Irish Wheelchair Association.

Care Alliance's focus is on family carers and on supporting our member organisations and others to better support such carers. For many families, State funded home care provision can be a key support in keeping people well at home. I refer the committee to our recent report on home care, published in October, copies of which I have here.

I am glad to say there is much consensus on home care - the importance of it, the good value it represents and the likely future demand for it. On the latter point, the 2017 ESRI report speaks of the need for what we estimate to be a 70% increase in home care support by 2030, from a current provision of 17 million hours to an estimated 30 million hours. That figure is reinforced by recent correspondence I understand Deputy Donnelly received from the HSE in its projections on future demand.

We welcome the Department of Health review of home care but we are concerned about its slow progress to date. We, alongside a group of more than 20 other NGOs, are engaging actively with the relevant Department officials in articulating a vision for the future of home care and we, in Care Alliance, appreciate that it will take political courage to grapple with the challenging issues of funding. The committee last week discussed the HSE budgetary overruns. To put it in context, the likely acute hospital overrun of €225 million represents more than 50% of the entire home care budget for 2018.

Finally, I echo the comments of the Minister of State, Deputy Jim Daly, at this committee last week about the unhelpful dominant narrative of hospital trolleys and that the focus needs to be more on how long people are waiting for a service, specifically, a home care service. In that regard, we have asked the HSE to include this as a key metric in its 2019 service plan.

I thank Mr. O'Sullivan. I call Mr. McLaughlin.

Mr. Pat McLaughlin

I thank the Chairman and members, in particular, those who were part of the all-party group on dementia.

I will focus on two evidence-based projects in which the Alzheimer Society of Ireland was involved. The first is the De-Stress study into 200 plus spousal carers. The following is a summary of the study's findings. In 2010, family carers and friends provided 81 million hours. That is approximately 50 % of the total amount of investment in dementia. Fifteen per cent of carers had given up their jobs to care for their spouses. Seventy-nine per cent of them stated they provided 81% to 100% of the care. On average, each of them had cared for his or her spouse for five years at the time of assessment. Only 50% of them had received any home help in the previous 30 days and the 50% who had, received an average of 34 hours in total in the previous 30 days - a little more than one hour a day to look after somebody with dementia. Only one-in-four had received family carer training. Seventy-one per cent of the carers had two or more health conditions at once, including arthritis, hypertension and diabetes, one third had fairly bad sleep quality and a further 9% reported very bad sleep quality. Approximately 37% of carers reported clinically significant depressive symptoms and 20% of carers themselves possibly had problems with cognitive functioning.

We would argue that if one wraps around services in the community, they can be a tremendous support to carers. This was mapped by the HSE and ourselves in 2018. One can see a very different range of services available, from 23 in CHO 3 to 44 in CHO 1. Looking at day centres nationally, only 41% of day centres operated on a five-day week basis. One might assume that means that people attend those day centres on five days, but they do not. Eighty per cent of people from our services attend one or two days a week. That is all they receive. Twenty per cent of those day centres operate only one day a week.

Wexford, Laois and Leitrim have no day care centre for persons with dementia. That denies nearly 2,000 people access to a service. In fact, taking three counties which are quite close, Leitrim has three services, Longford has six and Roscommon has ten. The point being made about the lottery certainly is true. Based on costings to the satisfaction of the HSE on the evidence of the number of services in an area and the minimum services there should be, €12 million would transform dementia services in this country. It would triple the services and provide a basic minimum level of service in each county in the country.

The challenge is significant. It is estimated that by 2046, the number of persons living with dementia in Ireland will rise threefold. That needs to be considered in the context that the number of people over 65 will increase twofold in that period of time.

I thank Mr. McLaughlin. I now ask Mr. Joseph Musgrave of Home and Community Care to make his opening statement.

Mr. Joseph Musgrave

I thank the Chairman and members for inviting Home and Community Care Ireland, HCCI, along with our colleagues from other organisations, to speak with the committee on the issue of how to improve home care in Ireland. I am joined today by Mr. Ed Crotty, managing director of Heritage Homecare and a board director of HCCI.

HCCI represents more than 70 member companies which provide care to 20,000 clients and employ 12,000 carers. I was appointed chief executive of HCCI on Monday, 17 September of this year.

There are a range of things we can do to improve home care in Ireland. From HCCI's perspective, we need a non-exhaustive list to ensure operational changes, to increase the supply of carers, to professionalise the caring workforce, to improve trust and dialogue between the key stakeholders, and to work together to ensure Sláintecare's success.

One of the most pressing issues facing the service is waiting times. While any increased funding to expand capacity would be welcome, there are crucial operational changes that need to be made. At present, none of the IT systems talks to one another – those in the acute system do not talk to the public health nurses and the allocation of home care packages is poorly commissioned.

This negatively impacts the ability to forward plan and to build capacity.

The current allocation of packages, which is done by fastest finger first as per the HSE’s 2018 tender, is sub-optimal. HCCI would prefer to see a different model that would be uniform across all CHOs, allow providers to participate in holistic care planning and thus end the widespread practice of inefficient rostering. This would provide more meaningful work for carers. The current home care package is designed to fit all situations, but the type of support needed in rural Ireland differs from that of urban Ireland. We need to look at a new funding model for home care. Lessons can be learned from the fair deal scheme for nursing home care.

As our population ages - we are all familiar with the statistics - we will need to expand the home care workforce. To do so sustainably, and to attract and retain the talent of people that we would all wish to care for our loved ones should the circumstance arise, we need to stop a race to the bottom on pay and increase the pool of available labour. HCCI submitted a case to the economic migration policy unit to allow non-EEA workers into Ireland to become home carers. We think it is vital that we broaden the base of available workers. In addition, HCCI is currently working on a submission to the Department of Employment Affairs and Social Protection in the hopes we can end the current system that punishes a worker for providing home care while in receipt of State benefits.

We need to change the HSE procurement rules so that the tendering process is a tool to improve the conditions of the workforce as well as to deliver value for money. The reality is that the HSE sets the conditions of the market. That carers do not receive travel allowances, except in rare circumstances, is as a result of the procurement practices of the HSE. Caring needs to become more culturally embedded, and turned into a profession with a defined and rewarding career pathway. Innovations are limited only by our imaginations. Why not provide a mandatory caring module in transition year, for instance? Professionalisation should also spell the end of a single hourly rate for carers. Specialist skills should be rewarded, as they are in every other industry. HCCI is pleased the HSE have conducted a review into the career of health care assistants, and we eagerly await the results.

HCCI welcomes this hearing today, but we are disappointed the attitude of this committee does not seem to be replicated elsewhere. One month after my appointment, I wrote to the Minister of State at the Department of Health, Deputy Jim Daly, to request a meeting with him or his officials to talk about the range of issues facing the sector. That letter has not received a response from the Minister of State. The HSE last held a home care providers forum in April 2018. This meeting of the HSE, HCCI and the non-profits should be a regular occurrence, and it is deeply regrettable the meeting scheduled for 5 December was postponed by the HSE. My hope is that in addition to the forum becoming a regular place to discuss operational issues, a high-level working group will be formed, convened by the Department, between the principal stakeholders so that we can work together and form long-term policy proposals. We also need more transparency in the operation of the service. Recent work by members of this committee shed light on the current waiting lists, and work by my colleagues at the Care Alliance similarly enlightened us. However, it would be better if the HSE regularly reported a standardised set of figures on the operation of home care across all nine CHOs. HCCI would welcome this extra scrutiny and transparency, for only in understanding the true picture can we all act on an informed basis.

Two developments that will shape the future of home care – namely, the statutory entitlement to home care and Sláintecare – provide a rare opportunity for us to rethink some of our assumptions and design a robust and sustainable home care service. Laura Magahy and her team are, by all accounts, doing great work at this early stage and I hope for a formal meeting with her soon. HCCI would like to see a framework that draws on the expertise of the relevant stakeholders and meets regularly to ensure Sláintecare is a success. We need to clarify how we will fund the expansion in community services needed to support the reforms, as well as start preparing the entire sector so that it is ready to provide this care. The regulation of home care is vital, and therefore we should be teasing out now what model of regulation will deliver the best outcome in the future.

Mr. John Dunne

Family Carers Ireland, FCI, is a national charity that works to improve supports, services and recognition for anyone living with the challenges of caring for a family member or friend who is ill, frail, disabled or has mental health difficulties. We say this because traditionally there has been a sense that family carers look after old people. but we have a much bigger agenda than that. We engage with more than 20,000 families each year. We also deliver 350,000 hours of home care every year, which gives us an insight into the operational aspects of caring. I would like to formally say that we are a member of the Home Care Coalition and support its goals. We also support many of the points put forward by HCCI.

Our position engenders a slight degree of confusion. When Mr. Musgrave spoke about labour and manpower shortages he was speaking about carers. Under Government policy, carers are unpaid. Care workers and care assistants are people who work in the home. There is a lot of confusion when people talk about caring, and it is very important that this committee is clear about it. Our agenda concerns the co-production of care, because we would maintain that the State has no remote prospect of being able to afford home care without co-production with unpaid family carers. Taking the CSO's estimate and charging it up very conservatively, families provide €10 billion worth of unpaid care in the home. The irony is that the way policy is going threatens to strangle that care and reduce it instead of helping it.

We are encouraged by the emerging themes which the Department of Health has abstracted from the first phase of its consultation. However, there are a number of issues which are causing real concern, mainly because they are not being discussed as opposed to there being a lack of consensus on them or that they are going in the wrong direction. The nature and purpose of home care will have to be defined in the legislation. We believe the legislation will seek to place primary responsibility on the family, with the State in a supporting role. We agree that is the right way to go and would command widespread support. Unfortunately, the HSE recently seems to have set its face firmly against this approach. I do not have time to develop this point in my opening statement, but I would suggest that there is a real prospect that the State will end up spending several hundred million euro extra because of the direction this is taking, with no increase in home care services.

There has been much talk about a funding model. In the initial stages, when the legislation was being proposed, there was almost a rush in the direction of co-funding. Our position is that we recognise that co-funding will be required in some shape or form. We are not willing to talk about co-funding the current system; it is completely unacceptable. The debate must focus on what we are trying to fund. Standards for home care must be defined and a model for home care found before we discuss how it is to be funded. A lot of current discussion centres on wonderful models from overseas. There has been quite a lot of discussion about the German system, for example. It is excellent, and is based on a very sophisticated insurance model. For example, if one does not have children one's insurance premium is higher, on the not unreasonable assumption that when a person is older there will be nobody to look after him or her, whereas if a person does have children they are required to under the German system. An insurance based system was first floated in Ireland decades ago. There has never been evidence of a political appetite to address it. We believe it is an interesting model to explore, but the reality is that good systems cannot be delivered without a proper funding model. Trying to fund this by way of means testing via taxation is never going to work.

As HCCI has said, there is a crisis in the staffing of home care. That crisis is going to get worse. We absolutely do not accept the ESRI and Department of Health-HSE projections because they are based on a steady-state situation. Over the next ten years, as part of the demographic shift, unless the ratio of family carers is increased from one in ten to one in five, we will have to provide massive numbers of extra paid care. That has to be built into a policy and thought about carefully, but it is not being mentioned or discussed.

The other elephant in the room is that the HSE itself is massively conflicted in terms of the delivery of home care. I do not say that as a cheap shot at the HSE. Many of the problems are not of its making, but rather are failures of policy. We should consider that. The HSE is a major direct provider of home care services throughout the country. It delivers services on the basis of historical funding patterns, meaning that consistent service planning and delivery is problematic. The current CHO system, where each CHO has an independent accounting officer and therefore a degree of operational autonomy - which the new regional integrated care organisations, RICOs, will also have - means that it is still practically impossible to achieve a consistent framework across the system.

The HSE places an emphasis on home care, yet I would argue that when it comes to service delivery the priority is secondary to the priority it accords to its own internal industrial relations. That must be named, acknowledged and discussed. I am happy to be proved wrong, but I do not believe I will be.

An effective system for dealing with grievances and complaints is essential to ensure quality home care services. We are dealing with individuals who are at the front line, with enormous independence and autonomy who usually work unsupervised in someone's home. HSE systems in this regard are unfit for purpose, which is a direct result of arrangements set by the Government, not by the HSE.

As I understand it, the HSE wrote to the Government two years ago asking for those policies to be changed. That does not relate just to home care; it relates across the system. There has been no movement on that but there needs to be movement in that regard. In our case, if we have a complaint it is signed and sealed within 30 days. That can include either the rejection of the complaint, the person is dismissed or anything in between. We have seen cases in the HSE where a similar situation has dragged on for years. There is no reason for that to happen. Furthermore, because of differential arrangements mandated by the HSE regarding working conditions for its own directly employed staff and for the staff of commission services, the hourly cost of direct provision is up to twice the cost of commissioned services at current rates. That is a major discrepancy and potentially, if we want to look at it that way, a total waste of money. That is worth discussing as well but I do not have time to develop it now.

In terms of commissioning, Family Carers Ireland would contend that since commissioning was introduced in 2010 there has been a steady reduction in baseline quality indicators. When the shift to a lowest common denominator home support specification is put beside the increasingly complex cases now being assigned to the home care system, it looks to us like a serious accident waiting to happen.

Far from saving money, we believe this year’s tender for home support services has resulted in avoidably higher costs of service because of the extent of gaming of the scoring system that was allowed in that tender. To be clear, I am not suggesting anything that happened was unlawful. I am just saying it was very bad policy.

On regulation, the Health Information and Quality Authority, HIQA, was originally scheduled to have assumed responsibility for regulating home care by 2016. There is not even an alternative date in place. The implications of failing to adhere to this timetable are not even being discussed or addressed, possibly because a HIQA survey in 2017 showed that 76% of people responding to the survey thought there was independent regulation in place. I am sure the HSE would rather not be the regulator but if one is the regulator, the commissioner and the direct provider, one has a massive conflict of interest.

This is, inevitably, a very high level review of issues, with five minutes to do it, relating to improving home care. I will be happy to discuss any of the points later.

I will open the meeting to our members. The first contributor is Deputy Stephen Donnelly.

I thank all the witnesses for their time this morning and for their statements. They are very useful. This question is to whoever would like to respond. In terms of the quality of the service, several witnesses suggested that the service is under more pressure than it was previously. Reference was made earlier to 2008 and, just a minute ago, to a degrading of the service. I have two questions. First, how is the service doing over time? Is it getting better or worse and If it is getting better or worse, in what ways? There is time per person; consistency, for example, having the same carer available to the same person; waiting time and access to getting what one needs; the quality of the care provided; equipment that is sometimes needed and so forth. The witnesses know that much better than I do. How are we doing and, specifically, in what areas are services getting better or worse?

In terms of the second opening question, several witnesses stated that access is getting more difficult. I presume that means that waiting times are increasing and that the amount of care available per person or per home is decreasing. On the basis that the spending on healthcare per person has increased every year for the past six years and is significantly higher than it was in 2008, what do the witnesses believe is happening if we are spending more money per person if the services are indeed getting worse?

Who would like to take those questions?

Mr. Liam O'Sullivan

I might speak to the issue of access. It is quite simply demographics. We have 20,000 people entering the 65 and older cohort each year. A proportion of them, particularly those in their 80s, are likely to need home care if they want to stay out of hospitals and nursing homes. It is a demographics issue.

In terms of labour costs, it is labour-intensive work and there is no getting away from that. Unit cost early rates are increasing, therefore, incrementally, that will continue.

I cannot speak to the issue of quality equipment but to reiterate, there were 10% cuts overnight in home care provision in the tough years of 2011, 2012 and 2013. They have begun to be restored but we are still playing catch-up.

Mr. Ed Crotty

I run a home care company in the Dún Laoghaire and Dundrum areas of Dublin South. To answer the Deputy's questions, the labour shortage is the biggest problem we face. We are at full employment. We are paying more per hour than we were a few years ago but it is becoming more difficult to recruit carers as they have a choice of other employment. The number of hours per client is reducing over time. Where someone might have got two or three hours a day from the HSE, they might get an hourly visit now or maybe half an hour, as someone said earlier, later in the day. That is less attractive work for carers, regardless of the hourly rate. The hourly rate is not as important as the conditions of employment. Mr. Musgrave spoke about professionalisation of the industry and said we need to do all those things, and get more carers into the system.

Mr. Pat McLoughlin

We certainly have not caused any of the HSE's deficits. In 2013, we received €11 million from it and in 2018, we received €11.2 million. In terms of what has happened, with 4,000 new people being diagnosed with dementia each year, in effect the services have ended up being rationed. People who might have been receiving two or three days a week in a day centre have been rationed. We are paying our staff at 2010 rates of pay. The differential between someone who commenced in the HSE in 2010 versus 2017 is now €5,500 per annum. That is for a care assistant providing direct care.

We evaluate satisfaction with our services. It is consistently high because we have the same staff. They have empathy, they are trained and they are not into clock watching or pressure to go to another client. People with dementia and their carers tell us that even if the State can give them only seven hours a week, they want the flexibility as to how that seven hours is used rather than giving one hour a day to get somebody up in the morning. By the time the carer arrives, the person may be already up. They may be living in a rural area. They cannot get the time even to go into a shop. Even if the HSE can give only a certain number of hours, it should give families and carers some role in determining how that is provided.

Mr. John Dunne

To give some examples of reductions in care, when tendering was introduced in 2010, organisations were allowed 48 hours to match a care worker to a particular case. In some parts of the country, one is now given four hours. Often one is not given details of the case to which one is being asked to match. There is not even a pretence of trying to get suitable matching. That is one example.

We have gone from requiring staff to have a full QQI level 5 qualification by 2012 to the current competency assessment approach, which costs deliverers. In our case it costs almost €100,000 a year to administer this monster, which is really a way for the HSE to say it has checked thoroughly that these people are competent in that it made them certify themselves rather than simply requiring them to have a qualification.

A major example is the 30-minute calls. They are poor anyhow but in respect of 30-minute double assists, where one has to do something with somebody using a hoist, which involves two staff working together, we refuse to take those cases on the basis that it is a serious risk and we will not deal with it. However, it is becoming commonplace to be asked to do it.

There is another example that is less tangible. I would argue that in the past ten years there has been a stripping out of social care into purely personal care. Personal care is starting to be neglected in favour of clinical care. However, the social care is very important. When we talk about home care, it is meant to be an integrated, wraparound service. It is not just a case of getting in there and stopping a person from dying today.

In terms of where the money is going, I agree with the Alzheimer's Society of Ireland, it is not going to us. If the members could get an answer to that question, I would be very interested to hear it. I am taking a crude figure as an example. There was an office within the HSE, and I am taking into account the costs of the leader, the support team and all the rest, which had a budget of approximately €500,000 a year to manage home care. There are now two. I do not understand the reason for that. The members might get to the bottom of it but in terms of this issue, there is €0.5 million on the spot.

The second question was about access getting more difficult. It has become routine in the past year for the HSE to arrive into a house and tell the person that because he or she gets the carer's allowance he or she will not get the home care package.

This will cost the State money in two ways. The State defended an action from the European Commission in the European courts on the exportability of carer's allowance. It defended that action on the basis that this was an income support, not a payment for the delivery of home care services. The HSE is now saying that is exactly what it is. Income support for carers comes to €1 billion per year. Exportability will be a significant slice of that. That is reckless. Quite frankly, it is lunacy. I do not believe it is being done intentionally but it does reflect a style of policy making that involves saying "this is what we are doing" with no consultation or discussion, instead of bringing people into a room and saying "this is what we intend to do, tell us if there is anything wrong with it and we will see if we can fix it." The HSE seems to like to learn not just by bumping into things but by jumping off cliffs and then discovering what is going wrong.

Regarding the second problem, we have met people who have been told that in order to get services they needed as part of a home care package they could not undertake themselves, they had to give up their carer's allowance. We had a case where somebody did that and then went back and said they had given back their carer's allowance to be told there was no budget to give them support. Another case involved an able-bodied young adult son being required to move out of the house before they would consider that home care was needed. That is how difficult it is becoming to get home care.

Ms Clare Duffy

Based on what Mr. Dunne said, it is important to remember that we are moving towards penalising rather than recognising family carers. If we are going to deny someone home care on the basis that someone is receiving carer's allowance, it is important that we remember that only a quarter of all carers receive carer's allowance in the first instance because it is means tested. Those who are lucky enough to receive carer's allowance receive €16 more than the basic social welfare rate. By rationing, withdrawing or denying home support to such persons, we are telling them that they would be better off on jobseeker's allowance instead of carer's allowance. Complicating this is the fact that carer's allowance for carers over 70 is assessed in the means test for the medical card. It is not assessed if the person is under 60. There is a litany of ways in which we are penalising and punishing family carers rather than recognising and rewarding them. The pension is another example but I will leave that one.

It sounds like time per person, the level of qualification required and availability are going down while the waiting time is going up and the system is being extraordinarily badly administered in a variety of different ways. In response to very clear frustrations the witnesses are obviously all managing on a daily basis, is anything working in the system? What is going well? In terms of the different types of support available, one of the presentations listed home care, home help hours, care packages and intensive home care packages. We know there has been a shift from discretionary home care or home help hours to these care packages which, in some cases, make sense. However, they do not always make sense, for example, in respect of cases in Wicklow with which I deal. What is working? What are the successes in the system on which we should build? How is the mix working out between the different types of package available as in package versus home care versus home help hours and so forth? Is there an opportunity to adjust the mix to bring in additional ones, stop doing particular ones and so forth?

Mr. Joseph Musgrave

I will take Deputy Donnelly's first question. HCCI welcomed the development of clinical governance in the HSE's 2018 tender, which many of my members have taken to mean having a qualified nurse or somebody similar. Codifying that is a good development. It is a baby step towards what regulation might look like and we think that is important, so that is one tick. The effort by carers remains immense. I attended the HCCI carers conference a couple of weeks ago and spoke to removed carers, some of whom were angry. They got a much-needed pat on the back by a lot of people for the work they do. My colleagues here would testify to that. There is also a lot of expertise in the system. Now that we have been operating for more than a decade, we have built up and have learned a lot of lessons. The frustration, particularly in this room, arises out of the fact that this expertise does not seem to be capitalised on. Again, while I would call that out as a positive development and a good thing, it is a shame that not much advantage seems to be taken of it. I will let others address Deputy Donnelly's second question in more detail.

Mr. Pat McLoughlin

What works for us is fund raising. We have been consistently successful in growing our fund raising to €3.2 million, which is shoring up State services. On a positive note, the National Dementia Office is including persons with dementia and carers in all its working groups looking at diagnosis, post diagnosis, support and care pathways. However, when we come to negotiating the service-level agreement with the CHO areas or the HSE, that is just set at nought and there is no further funding. We also would be very supportive of the Understand Together campaign, which is raising awareness of dementia services. It raises awareness but those people ring a national help line provided by our volunteers six days a week who have to tell them that even though they have come forward, there is nothing for them if they are in a county with no services. We support Government policy in respect of the national dementia strategy. It is not mentioned in Sláintecare. We support all of the initiatives that Government and the National Dementia Office are undertaking. We have been included in it but we are simply not seeing any dedicated resource for dementia and no realisation of just what it is like to be a family carer or indeed a person with dementia.

Mr. John Dunne

When one comes in here, and particularly when one is asked to boil down our statements to five minutes, it is inevitable that one will throw out the negativity. It is worth acknowledging that millions of hours are being delivered. It is a valuable service and a life saver for people. There are individual care workers - not carers - within the system who provide an heroic service. We were not unique in this, but during the storms last year I had a difficulty because when a Status Red weather warning is issued, the rule is that services are cancelled. People were going out delivering meals and making unscheduled and unpaid calls to ensure the people they were looking after were catered for. That is the positive energy in the system and it is worth celebrating and acknowledging. Having said that, the system is not fostering or feeding that. I know where the Deputy is coming from in terms of looking at the positives as well. What I am looking at is the trajectory, which is going the wrong way. Dublin is broken. The Deputy mentioned the difficulties in terms of Dublin. We did not even bid to deliver home care services in the Dublin area this year because it is a zoo. This relates to the policies and systems that are in place. It certainly does not relate to the care workers and the clients.

Ms Audry Deane

Senator Dolan would be very aware that many of us have been working with the Department since 2000 urging it to define eligibility and entitlement to services. We still do not have that. I do not envy Laura Magahy and her small staff untangling that one because it is the legacy of the extremely bizarre hybrid system we have inherited and managed to devolve incrementally over the decades. We do not have a strong and robust eligibility and entitlement framework. Therefore, the HSE has a myriad of ways of looking at this. The nine CHO areas have different ways of measuring, allocating and prioritising need. This, quite frankly, is shocking - that a small territory of a few million people is unable to know what is happening and project adequately. Our colleagues have told the committee what is coming down the track. This has to stop. It needs to be addressed very quickly.

I apologise for not being here at the beginning of the meeting but I was watching on the monitor. I thank the witnesses for appearing before us this morning. My questions are pretty much directed at all of the witnesses. My first question concerns rates of pay.

We know the rates of pay that are paid to home help carers directly employed by the HSE. I am curious to know the average rate of pay for home carers. I think pay and conditions are central to the recruitment issue to which the witnesses have alluded.

The average number of hours per person is going down but the number of hours allocated is going up. The Minister for Health often loudly proclaims the percentage increase in the number of home help hours but, in real life, people come into my clinics saying they cannot get home help hours. There is a disconnect there.

Ms Dean mentioned calls that last only 30 minutes. Have the witnesses encountered a 15-minute call? I have heard of that happening and it shocks me. Collectively, those agents who provide home care should be telling the HSE, with one voice, that there is a minimum standard and number of minutes that should apply. The minimum should be an hour. Half an hour is not right but 15 minutes is beyond even that. I have heard of that, so perhaps the witnesses could comment.

Mr. Dunne mentioned that it is possible to game the numbers in the tender process. I would like him to elaborate on that because we need more information about that.

I ask the witnesses individually if they would subscribe to a national minimum standard in terms and conditions. To put my cards on the table, some of the witnesses may be aware of the fact that I used to represent home helps in the HSE and voluntary sectors, though regrettably not so much in the private sector. There may have been improvements in that since I moved on. One issue that was raised by our members was about stability. I could never get my head around the fact that the work was there and there was a demand for the service and yet the contract could not reflect that. I believe that, if there was standardisation in terms and conditions, a standard minimum rate of pay and standardised contract, we would not have the issue with recruitment because very often when people leave the home care sector it is not to go to jobs with a dissimilar rate of pay. The rates are often very similar but the difference is stability. In the new job, one might work on a changing shift pattern but would work for only eight hours a day. They are some of the most flexible workers in the workforce, as both I and the witnesses know. They are looking only for stability of income and the capacity to plan in a small way. Oftentimes carers leave for shift work so the awkward times are not the problem, it is more being able to know how much work they will have. I could never understand why the HSE would not commit to that contract in the context of rising demand. I would be interested to know the witnesses' views on a standardised contract and guaranteed minimum numbers of hours, given we know there will be an increase in the demand for home care.

Mr. McLoughlin mentioned that funding for the Alzheimer's Society of Ireland, ASI, over a long number of years, had gone from €11 million to €11.2 million. Perhaps the other organisations might be in a position to comment on their funding, or their contracts with the HSE and what direction that is going in because it does not seem to be moving very fast. I would be interested to know that.

Finally, is there a role for HIQA, or a similar agency, in providing the regulation? We know that regulation is very tricky for any lone worker who deals with the public. Do the witnesses see a role for HIQA in bringing in that regulation? Do they see a role for another agency? I see the difficulty with the HSE being the regulator and the commissioner and provider of services. That would cause some issues. HIQA is already in place, so do the witnesses see its remit expanding, or do they think that there might be a role for another body?

Mr. Pat McLoughlin

I do not mind taking some of those questions. I have already outlined the fact that, in the Alzheimer's Society of Ireland service level agreement with the HSE, it has not been able to pay its staff an increment. We took our cuts in 2010 and no member of staff has taken an increment since then in ASI.

Our allocation of hours is going down because we do not provide generic home care services so we did not get the tender. Our home care footprint is reducing by anywhere between about 8% and 12% each year.

I would absolutely support national minimum standards. The number of intensive home care packages at the moment for persons with dementia in the community is 178. That is not allowed to grow, as far as I understand, unless somebody dies or goes into residential care.

I totally support the idea of a separate regulator. What is going on at the moment is dreadful. If a respite centre provides one week of respite for somebody with dementia, a nurse is in charge right throughout the evening. Nobody else will be allowed to give a drug to the individual. There has to be a care pathway for it. There is nothing like that for the other 51 weeks of the year but, for that one week, the State gets very self-defensive about how it provides care. We absolutely support a separate regulator.

Over the five-year period that Deputy O'Reilly mentioned, we have moved our fundraising from about €2 million to more than €3 million and that is propping up the system.

That is plugging the gap.

Mr. Joseph Musgrave

I will take on some of these questions and will start with the Deputy's point about regulation. HCCI, supports an independent regulator. The more pertinent question is the model of regulation. Would it be a compliance model, where inspectors are sent into people's homes, which would be quite invasive? Would it be a licence to operate a model from existing providers? The more interesting and complicated question is how to regulate the sector, rather than who would do it, although I agree the HSE should not do it because of the conflicts of interest.

HCCI does not receive any funding other than from members but, similar to what Mr. McLoughlin was saying, most of our members are operating on legacy rates. The HSE has not updated its hourly rates of pay dating back to 2008. For instance, some carers are going into one home at one rate and into another home at another rate, which is unusual. The tender ties members in for two years and the HSE refused to touch or to reopen it.

I will return to the Deputy's point about national minimum standards because I think that is the largest topic.

No member has reported to me about a 15-minute call.

The rate of pay averages around €14 by the time the higher rate for weekend work is included, as well as holidays and other entitlements. The national minimum standards point ties back to the rate of pay. HCCI has a set of national standards to which every member subscribes. I came to this job only in September and one thing I want to do is to update those standards to perhaps include some of the points about which the Deputy is talking. Other than the HSE tender, the standards of my organisation are the only ones of which I know that apply nationally and against which members are independently audited.

We need to look at professionalising care workers because, at the moment, we commission services based on one hourly rate of pay, regardless of whether it is a legacy rate. We do not ask if someone is high, medium or low dependency, or requires a care worker with a separate set of skills. People in my family are frontline care workers so I know this well. What is the career pathway to develop and incentivise people to get more skills? We want to look at that. The current commissioning system is locked into a cycle of fastest-finger-first bidding to provide the care, rather than taking a holistic approach, which I am hoping this committee is getting to the bottom of, because the Department and HSE do not seem to want to engage with me about this. We are locked into a stalemate whereby there are some good ideas at the table about national minimum standards but the pathway to implementation and further development seems obscure.

I invite Ms Joan Carthy to respond.

Ms Joan Carthy

The tendering process is very much geared around the cost and who can provide a service at the cheapest rate, as opposed to the quality of service with which people should be provided. The number of service providers is also an issue. In a small catchment area services are spread between different service providers which brings me back to the point of employing enough staff to be able to take up an hour's work here and an hour's work there. If the number of carers could be spread over a smaller number of service providers that might give an opportunity to employ people on fixed contracts of, for example, 20 hours. That is where the stability piece would come in and raise the bar a little.

Mr. Ed Crotty

I support what has been said. On a practical level, if one takes for example a home care package in Arklow and there is a carer who wants to go there, one wants to add two or three more home care packages so one has a cluster of them in the area. Each home care package is commissioned independently of all the others so there is no opportunity to cluster them. I do not mean to focus on Arklow but if one takes a home care package there, assuming one's rates are competitive, one should be able to get the next three or four that come along so there would be one carer who goes there and has a whole morning's work. Is that what Ms Carthy is saying?

Ms Joan Carthy

Yes, it is.

Mr. John Dunne

This comes back to a reference I made earlier to internal industrial relations. One must realise that the bulk of the delivery is done by HSE staff. They have blocked our contracts. They operate in the prime cut hours.

I am very familiar with the contract. I negotiated it.

Mr. John Dunne

We have nothing against it, but what the HSE is doing is just using the other providers to fill in the gaps around that. In the context of stability, we had a case recently where we could tell they were HSE packages because there was a four-hour block in the middle of the day. That is gold to any commercial provider. I am putting ourselves in that category for the purposes of a tender. We recruited 12 staff. A block of cases came to us very suddenly out of the blue and we put in place the packages. Three months later we got a call basically saying, "thanks very much, you can fire all your staff now as our people are ready to take over again". The stability for the HSE staff is coming at the cost of the rest the sector. I am not saying that is necessarily what should happen but that is the way it is being operated at the moment.

That is a very good argument for the HSE to be the sole provider. If the HSE was adequately fulfilling the demand, there would not be a need for outside recruitment. There would be a sufficient pool of staff.

Mr. John Dunne

If the HSE could get its staff to work for the hours that are needed, in terms of flexibility, and if it could address responsiveness in terms of disciplinary processes and all the rest I would not necessarily argue with that, but it is pretty clear to me at the moment that it would not work. It is not an ideological issue: it just would not work because the flexibility is not there. I attended this committee some years ago talking about a man who was being put to bed at 3 o'clock in the afternoon for the only reason that his HSE worker did not want to work any later. I was told three weeks later that the case had been sorted, but that is the system.

As Mr. Musgrave said, HIQA is the one that has most often been cited to do this but it would probably have to stop at the front door. The problem with that is there is a limit to how much one is regulating the quality of care. On the other hand, to get into a different sort of model, one must first look outside the health system. I have a mental image of a reasonably elderly lady carrying her adult son up a very narrow stairs because the only toilet in the house was upstairs and the son was profoundly disabled. That is an issue of housing adaptation. That is clearly a major health and safety issue, but are we going to mandate an initiative which states a house is unsuitable and a person must go into care. We are moving somewhat in that direction with Children First because once one starts to put in place safeguarding measures an inspector will deem a house to be unsafe and that will be the end of it. There is no debate and no regard to what the family wants. I do not know what the answer is but introducing HIQA into the process seems to be a reasonable step along the way.

For us, the direction of funding has to do with consolidation. We used to have 50 separate funding agreements with the HSE, and that has now been consolidated down to ten, which is very good. However, like the other organisations, last year there was a big debate and we were told there could be no increase in costs and no reduction in services. The HSE was doing both itself but that did not really matter; that was it. We went in and we kicked the stuffing and we got some increases here and we got some reduction in services there, but that is the mindset. As somebody said, that goes back to the legacy costs. We were awarded a contract in 2008 or 2010 and I got a contract modification recently to say the HSE would continue to pay us the same rate as was set then to deliver healthcare. The rate is €14 an hour and if one maps that onto the pay of a home care worker, one is ignoring the fact that, first, there are specifications in the contract around management. I mentioned already the competency assessment process, which costs approximately €100,000 a year. That has to be paid for out of the €14 an hour. There are three pages of policies. I do not mean a three page policy, I mean a three page list of policies with which we have to comply. That all costs. When people ask where the money is going, it is going on bureaucracy, which is required although it is not all necessary, but it is there and we are contracted to deliver it.

I was asked to comment on the tender process and gaming. The way the tender process is constructed, one is asked to quote for hours during different periods – day time hours, night time hours, weekend day time, weekend night time and bank holidays. It is strange to be asked to tender for bank holidays because there is a statutory definition of what they cost and it does not vary. In providing the scoring for each of the rates, there was a notional number of hours that would be provided. One of the frustrations of bidding in this competition is that one can be certain the statistics one is being given are wrong. In fact, it says in the tender that one cannot rely on any of the figures outlined. People look at the figures and they look at their own experience. Clearly, some people looked at it and said, sure there are very few night time calls so the lowest bid on the night time rate was lower than the lowest bid on the day time rate, which from her background Deputy O'Reilly might say is suggestive of gaming. The advantage of that is that one gets a very significant score by having that ridiculously low rate. That is the gaming element. Because one got a high score for the low price on night time rates, one was able to charge a higher rate for the day time rates, which is from where most of the billing comes, and one did not get penalised because one had off-set the penalty with the low score. People got through with the higher hourly rate in the day time than would have been optimal from the point of view of the HSE's budget.

A secondary issue is that we would argue that the low rate is borderline if not below the minimum wage. It is not below the formal minimum wage. People talk about travel expenses. The key cost with travel is time. It is a requirement under European law to recognise travel time, but it is not a requirement under Irish law, which is interesting, but European law takes precedence until such time as it is triggered in Ireland. Up to now it would have required a court case to trigger it, but interestingly there was a development in the European Court of Justice in the past fortnight which opened another avenue for that. The travel time is the major expense. When the HSE is paying its own staff, it pays them a slightly higher rate, but I would not begrudge that. There are all sorts of flexibility that organisations such as ours can give in terms of a little Christmas bonus or whatever else that allows us to even it up, but the big difference is travel time. I am a very innocent little man, and the thing that mystifies me most is that if we are contracted to deliver a package from 9 a.m. to 10 a.m., we deliver a package from 9 a.m. to 10 a.m., yet when I talk to people, especially in Dublin, they ask: what does 9 a.m. to 10 a.m. mean? I say it means 9 a.m. to 10 a.m., but apparently it does not. People take their travel time out of that hour. Even if the HSE wanted to give out a 15 minute package, it would have to pay us for 30 minutes under the rules of the tender. I wonder if people are experiencing a 15 minute care package because a chunk of time is being used for travel.

I was asked by a home carer who had been approached to work for 15 minutes.

Ms Clare Duffy

I will add that I have just finished up a series of seven regional forums with carers all around the country. About 50 to 100 carers came together. At every one of those forums, carers mentioned at least once 15 minute calls and half-hour calls. Yesterday in Donegal I had a girl whose mother who has dementia is getting a 20-minute call to get her out of bed and washed. I reiterate what Mr. McLoughlin said. Families are grateful to get anything. The issue is quality. Quality sometimes does not come into it because families are so grateful to get anything that they just take it. They do not complain. They are terrified to complain when the quality is questionable. It is worth repeating what Mr. McLoughlin said earlier. We have an expression in Family Carers Ireland that sometimes home support hours are inflicted on families. Families take whatever hours they get when they are given them. It might not suit the family at all because someone is there between 9 a.m. and 10 a.m. for example. People will take them because that is all that is available. It is important to restate that. People will not complain, even about the shorter calls, because of the fear of the consequences and repercussions.

That is a good point.

I will move on. We can come back to Deputy O'Reilly if she has other questions.

I thank the witnesses for their presentations. I thank them for all the work they are doing in this very important and growing area. I will return to the cost issue in tendering for contracts. I was given figures some time ago that showed private home care providers are quoting something like €22 or €24 an hour. They referred to deducting what they pay to the staff, which is the hourly rate, and adding in the costs of administration, insurance and all the other costs associated with providing a service. Has anyone asked the HSE for a breakdown of what it costs it to provide homecare per hour when the cost of its administration service and insurance is taken into account? I was told it was costing the HSE around €32 per hour to provide home care. Can anyone give information on that? Mr. Dunne spoke earlier about-----

Is the Senator's phone active?

It should not be.

It is affecting the sound quality.

Have we looked for that information? I am concerned about the people who are being required to provide the service and being asked to tender. The tender has to meet the HSE's requirements but what is being paid out is way under what it costs the HSE to run it.

Over the past four years the HSE has taken on an additional 13,000 people in all areas, including nursing, administration and caring staff. I have heard complaints about companies that were providing home care and a lot of their staff have been recruited by the HSE and have been given contracts. There are more than 2,000. Will the witnesses give some clarification on that? I understand Nursing Homes Ireland is having a problem retaining staff as are the private home care providers. I am looking for some clarification on that.

The third issue I want to raise is our growing elderly population. The figures have been referred to at this meeting and numerous other times. We now have full employment. How can we get more people to provide homecare if such competitiveness is a feature? I understand there are difficulties involved in bringing people in from abroad. It is a challenge. The people who are providing homecare privately have the challenge of recruiting workers. The HSE has difficulties in getting carers for people despite the fact it is paying people a reasonable rate. We are now facing a major challenge in that area. How do we deal with that challenge?

Where the HSE is providing homecare, I have come across a number of cases where there is a major difficulty at both weekends and public holidays. How do we deal with that issue? On the one hand, the HSE is providing a very good service between 8 a.m. or 9.a.m and 5 p.m. or 6 p.m. five days a week but at weekends and on public holidays there is a major problem. There is no company available to provide care over the weekends. I am talking in particular about people who live alone and there is no immediate family around them. How do we face that challenge?

Mr. Liam O'Sullivan

Senator Burke referred to the HSE and 32 hours. In our research over the years, we have made assumptions because the HSE could not or would not give us the data. We looked at €20 per hour; more recently €25 per hour is the assumption we are going on. I am not convinced. I think it is probably closer to €32 per hour. Pension and travel costs are not reflected properly in the costing. When the Minister announces an extra 100 homecare packages, the cost base is a little naive. Perhaps the committee would seek that information directly from the HSE. We would love to hear it.

The Senator was spot on about the increase in staff numbers. The reality in spite of the reference to primary care being crucial is that hospitals continue to recruit more staff and overrun their budgets massively, five or ten times compared with homecare and community care. I will give an example. The committee discussed it last week. An extra 47 public health nurses have been taken on in the past three to four years, which is a 3% increase. If one contrasts that with the 27% increase in staff at grade 8 and above, one questions the priorities.

On the issue of foreign care workers, the reality is they will provide a future supply of care. Valuing that and giving people the legitimacy to be employed legally here is really important. A number of the not-for-profit organisations have made representations on reviewing the criteria and deeming care workers to be in short supply to make it easier for people from abroad to come here and work legitimately. It will be part of the solution.

Mr. Pat McLoughlin

We do not have information specifically on the cost of HSE care but I absolutely take the point about reaching full employment. We get about €2.4 million from the Department of Employment Affairs and Social Protection for our community employment, CE, schemes. About one in five of our staff is on one of those schemes. We have situations where we find those CE workers difficult to replace. What happens in that situation is the Department of Employment Affairs and Social Protection shows a saving and the Department of Health has to fight for the additional resource, perhaps 19 hours, being used by that CE employee. I have raised the issue with two Ministers of State. I have said it does not make sense. There is a pot of money, about €2.4 million, and we could put it towards a proper training programme and a career structure so people can work in areas such as dementia or Alzheimer care and be available in the marketplace. Some private providers have come together on that issue. It needs to be made attractive. We are losing staff to the HSE. I do not want to over-egg that issue but we have noticed a trend that staff who are working part time with us have advised us they are working part time with a private operator and doing private hours for individuals. That puts individual staff members in a very difficult position. They are dealing with three sets of rules and policies and procedures. They are dealing with Garda vetting for providers. Safeguarding issues may be also dealt with differently in different organisations. The situation of part-time carers is very difficult. It would be much better if there was a proper career structure and training pathway in place and that the money from the Department of Employment Affairs and Social Protection was put towards a proper training programme in health. That is the view of the Alzheimer Society of Ireland.

Mr. John Dunne

I will echo the comments made by other people.

I do not think anyone, including the HSE, knows their cost. That is not a cheap shot. My last job, when I worked in the public sector, was to approve a budget for an organisation like the one with which I am now involved. I went through it with a fine tooth comb, put lots of red lines through it, and ironically, three months later, I found myself running that organisation, trying to deliver the project on the budget. I learned how sheltered the public sector is in terms of costing a service. It is something the committee could usefully investigate. Furthermore, if the committee does get an answer, I would be very happy to come back to the committee and give it the benefit of our insight on the cost structure that is being presented to it because we do it every day. The HSE and its managers, to be fair, do not see most of the costs associated with the service; they see the direct pay cost but they do not see the rest.

The number of people we are losing to the HSE is not something I would over-egg but it is certainly true. In 2011, in the good old days, when a FETAC qualification was specified, we trained all our staff up to that level. It cost us tens of thousands of euro. People said they could not afford it but we said that was the standard, we said we would meet it and we will. We have now lost those staff. We do not spend money achieving a standard that is not required because if we do, the people will be taken away from us. There is a dysfunction there with a shortage of staff and the staff are getting cannibalised. We keep an eye on the staff turnover metrics and we are pretty happy with our retention rate but we definitely do lose people, not only to the HSE but also to the nursing home sector. When people get to a point where they need a block of work on which they can rely, we cannot provide that, and they go to work in the HSE or a nursing home. People will work in our sector only if casual flexible hours suit them.. Whether that is good or bad, that is the reality.

Deputy O'Reilly's argument for a set of national conditions are relevant. I do not have any difficulty with that but the same conditions would have to apply everywhere. I would say we are demanding of our staff in a way that I am not convinced, procedurally, the HSE is. That is an issue that needs to be sorted out.

On weekends and public holidays, we just got a request from a part of the country where the HSE asked if we would help at Christmas and the new year and we said we certainly would. Our own packages are required to keep working over Christmas, we are a 365 day organisation. If we are due to do something on Christmas day, we do it.

Ms Audry Deane

I want to draw the conversation back to the fact that we are talking about people - frail vulnerable people, their loved ones, families and communities. I deeply welcome the degree of technical expertise by all the stakeholders here, as no doubt do Deputies and Senators. However, we should remind ourselves that the culture and values of the HSE are care, compassion, trust and learning. I am a member of the National Patient Forum. We have marvellous, creative and very inspiring discussions about coproduction and codesign of services but I am not hearing any of this today. Therefore, I want to bring the person back into the room. As we speak about the back end technical part of this, which is obviously failing and not fit for purpose, every day and hour there are people in wholly unacceptable conditions. Age Action is not at the technical end of this which we are leaving to our esteemed colleagues but the calls to our organisation are frankly heartbreaking. The people out there do not know their entitlements and do not care about the back office technical end because they are suffering. As Yeats would say, we are in the rag and bone shop of the heart. The elected members here have a responsibility to be part of the robust discussion, which must happen in our society, about how we will arrive at a statutory home care system which is adequately funded and which meets need.

Mr. Joseph Musgrave

I agree with Ms Deane's comments. That is why we must grapple with the technicalities. On the Senator's point about HSE's cost, I would reiterate that other than FOI requests, I do not see how we can get the information. They have not met with my organisation or non-profits since April which for an operational forum design to get to the heart of a range of issues is unacceptable.

I also would not over-egg the agency recruitment of staff but it does go to the heart of the conflict of interest in the commission of care and hiring staff. I have been told by members that packages seem to be launched almost on a pilot basis in some areas and once the HSE establishes that the packages can be run regularly, they then hire staff which leaves my members and others in a difficult situation, perhaps having to let go carers if they cannot find other work for them. While the specific issue of the recruitment of staff may not be the most burning issue, the conflict of interest is one to which we must return.

As Mr. Dunne noted, weekends and bank holiday work is something my members are required to do, and do provide. They provide 24 hour care. I am aware from my own family circumstances of people who are on call having to leave at all hours from family functions to provide care. I have seen this in action.

To get people into home care in the workforce will take a combination of capacity building and improving conditions. HCCI submitted to the Economic Migration Policy Unit a proposal to allow non-EEA workers into the country. We could do this and be innovative in how we do so. We could take an approach where we look at where capacity is low in each CHO and establish how many more staff we need and their availability. The mechanism to do that does not exist and, even if we did have it, we do not have the tools to increase the workforce. That is what we are seeking. Following Mr. McLoughlin's point, we need a step change in how we view the workforce, and career path and professionalisation is key to this.

On capacity, HCCI is working on a submission to the forum for social protection. The social protection system is not currently designed for careworkers. Instead of a tapering system where it is possible to work a certain number of hours and keep entitlements, it is calculated by day. If someone provides a block of hours of much-needed care, and wants to do this, they will be penalised by the Department of Employment Affairs and Social Protection which will tell them they cannot have their entitlement for that day. I am encouraged by the early signs that the Department is wiling to listen but I must work with others on a submission that puts the case, and I hope to get the committee members' support on that. That would release more capacity and more people who want to provide care, but are currently penalised.

Commissioning is very important in this. It is difficult to provide meaningful work for carers. Part of this is rostering where, as Mr. Crotty noted, one can provide care in what would be a sensible way. One would not send a delivery man half way around an area, he would be sent on a route. I am not suggesting we send people on routes but if we had a more holistic system and planned more effectively we could give carers a better quality of life and improve the quality of their work.

Ms Clare Duffy

As well as the terms and conditions, much of this area is tied in to the Department of Employment Affairs and Social Protection, whether it realises it or not. We have met representatives of the Department in recent years. We met them when unemployment was at 10% because we could not encourage people to come off the live register and take up caring roles and we wanted to be creative and see what we could do. The Department pointed to four pre-existing schemes, such as the part-time jobs incentive scheme, that they felt should address the issue but they simply did not. The Department, which now has the employment portfolio, should be thinking in this space and need to get much more creative. For example, carers in receipt of carer's allowance are allowed 15 hours a week. Seven or eight years ago income earned during the 15 hours as a home care worker was exempt from the means test for carer's allowance as an incentive to encourage people to work as home care workers. I am not advocating that specifically but it was a sign of an eagerness of support. We have 80,000 carers who receive carer's allowance.

They are allowed to work 15 hours. Most of them would like to work in a paid capacity, in paid care work, and we should be looking at how we can incentivise them. This would address the likes of the pension issue and the financial issues they face. It would also help them to stay engaged with the labour market while they are caring. I therefore agree completely that we must look towards the Department of social protection, which now has that employment element of the portfolio as well.

Before I bring in Senator Dolan, I wish to make a comment. From a practical point of view, what triggers a request for home care? It depends upon the availability of families to supply support themselves. Many families make extraordinary efforts in supporting their family members, even their neighbours, in remaining in their homes. I am aware of cases in which people have been kept out of hospital and out of nursing homes by the extraordinary efforts made by family members who either are living with the person who needs care or come home to look after them, taking time off work. There is the intervention of the public health nurse, the community intervention teams and, eventually, palliative care teams that come in to look after patients. An extraordinary amount of care is provided in the home by family members. There is never a request for home care because they want to do it themselves. There are other families who cannot do this. I refer to patients living on their own and their families. Either they do not have a family or their family is scattered around the world so they do not have that capacity. An extraordinary amount of work is done by family members in looking after their sick and disabled relatives at home. Eventually, though, there is a trigger in that there is a requirement for home help or a home care package. It might come from the patient himself or herself, the public health nurse or the doctor, or, if the patient is in a hospital, when they are being discharged there is a requirement. There are many triggers for the requests for home help and home care packages. When this trigger is pulled, a request is put in to the HSE, usually by the public health nurse, but it could be by the hospital, and this is then assessed by the HSE.

Here I see a problem because now it goes out to tender. What are the criteria for the tendering process? How does one decide what someone needs and how it will be delivered? Quite often home care is delivered in a very fixed and strict manner. It might not fit the working arrangements of the people who live at home with the patient. They may have to go to work. There can therefore be a lack of flexibility when the home care is actually provided. As someone here mentioned, it may come when there is help at home and they need the help when they are not at home to look after their relative or friend. Is there sufficient flexibility in the system to do this? I am really interested in the criteria used to decide how much home help one gets and who gives it. I am aware of supported housing for elderly people where there might be four different organisations coming in to the same group of 15 or 16 houses when one person could deliver the home care for the people in that very concentrated area. There might be four different suppliers coming in to give the care, which does not make any sense. Is there joined-up thinking in how the tendering process is used effectively and cost-effectively? Furthermore, carers who provide care at home also require respite care. Is there sufficient support for carers who need a rest themselves from looking after their relatives? Perhaps the witnesses would like to discuss this point.

Mr. John Dunne

I do not think the tender is particularly relevant to the questions the Chairman asks. The tender is a way for the HSE to pull in supplementary flexible support for a service that is mainly delivering itself. That is how I would describe it. There are huge variations geographically around the country. In some parts of the country the HSE employs thousands of home care workers itself and provides most of the service and only fills in the edges. In other parts of the country the history is one of outsourcing, so there is flexibility. To respond to the questions the Chairman asked, an application process has been just put in place, and the interesting thing is that the application must be made by the person needing the home care. It is not made by a family member, the public health nurse or the hospital. I do not know how this will work. It is in its very early stages.

As for the assessment, again, the Chairman is probably better equipped to probe this, but my understanding is that the care needs assessment is carried out in two phases. There is a clinical and social care assessment.

The single assessment tool, SAT.

Mr. John Dunne

Yes, there is the SAT, but I am not even talking about the technical assessment. What I mean is that there are people who sit down and say, "This is what this person needs." That then gets passed to a budget office, which says, "This is what this person is getting." This is an interesting approach, but my understanding is that is how it works.

Regarding the flexibility of hours, a pilot programme was trialled in Clare last year. I refer to client-directed home care, which is a model used internationally. The one thing I will tell the committee about this is that client-directed home care in Ireland has nothing to do with any of the international models but it does allow one improvement, that is, some flexibility around timing and how one phases one's hours. Given the industrial relations element of core hours and work outside certain hours, I was curious as to how client-directed home care was compatible with the current agreements in respect of HSE staff. I asked, what are the limits of this? The answer is that client-directed home care would be offered to people for whom the HSE feels it would be suitable. I do not know what this means but it covers a multitude and does not suggest a real openness to flexibility and so on. It is moving slowly in that direction, however. There are huge problems with client-directed home care. The way it happened in Clare is that people were handed a list of 20 providers when they were at a peak crisis and looking for home help and were told, "Off you go now. Sort it out." One of our worries and suspicions is that in areas where the HSE is struggling to deliver, even with the assistance of the contracted providers to deliver home care, by handing over that piece of paper, the responsibility suddenly passes to the family rather than to the HSE as the service provider. There are a lot of issues to consider, but if the committee hears talk of client-directed home care, and it probably will, it should be aware that it is highly problematic but may contain the seeds of something that will lead to flexibility down the road.

Is that similar to someone going into a nursing home and being handed a list of nursing homes in their area from which they can choose whichever one can provide a bed?

Ms Clare Duffy

The piece of paper they were handed in the pilot for consumer-directed home care was what I would call Monopoly money. It was €200 worth of home care a week. They are handed a voucher with a monetary value on it and then they can choose from a list of providers and how-----

Mr. John Dunne

The list is the successful contractors in that area. That is what they get.

Ms Clare Duffy

Yes.

Mr. John Dunne

That list is getting longer, though.

Ms Clare Duffy

Then there is the monetary value that goes with it.

Then they go and seek the care from-----

Ms Clare Duffy

They know they have been awarded €200 a week in care value, so then it is up to them to shop around all the providers in their area to see which one can provide the care. It is up to them to spend their €200 as they wish. Very often no one provider can provide the €200 worth of care, so it is a jigsaw of all these providers coming together.

Mr. John Dunne

Ms Duffy is actually making it sound better than it is. It is a bit of a joke because at the end of the day one may or may not get this. Then one must go out and fix it. The HSE retains oversight to ensure that one's care needs are being met, so one goes off and negotiates with all the providers and then one must go back to the HSE and get it to sign off that what has been negotiated is acceptable to it. Now, there is good reason for this. One does not want the €200 to be spent on ice cream. At the same time, though, all it is doing is creating a huge amount of extra work and pressure for the family.

Ms Clare Duffy

The €200 voucher in some cases was left behind the clock on the mantelpiece because the older person just did not know what to do. They were wondering, "What do I do with this list of people?" Many people did not follow up. Months went past during which people did not know what to do with the voucher.

Is there a freedom with that voucher to choose a person in the community?

Ms Clare Duffy

No. That was the list of providers.

It has to go through a recognised provider.

Ms Clare Duffy

Yes.

Mr. Ed Crotty

May I clarify? Sorry, I know Senator Dolan wanted to come in. I think when the Chairman mentioned tendering and how the packages are tendered, he meant each individual case and how it is allocated and awarded to the providers. Is that what he meant?

Mr. Ed Crotty

As others have said, tendering happens every couple of years and it leads to an approved list of providers. Does the Chairman want to know what happens day-to-day?

For each individual person, yes.

Mr. Ed Crotty

In our area of Dublin south-east one gets emails every day from the local health officer offering a case or cases. The client gets an approved list of providers. Until recently he or she listed three providers that he or she preferred and, in turn, the local health office offered the case to the first, second and third choice until one provider accepted the case. That situation was changed in the 2018 tender and now there is a system which some of us call a case of the fastest finger. I mean an offer is made to all of the providers and whoever answers the email first is awarded the case. That is not a good situation because there is no time to think about whether one has an appropriate carer or service for the entire hours, for the week, etc. At the moment, our experience in CHO 6 and CHO 7 is that cases are being accepted by providers within one or two minutes of an email being issued.

Are providers tempted to cherrypick? Private providers may choose to provide care in concentrated urban areas and leave the rural areas to the non-profit providers who have greater difficulty because there may be greater travel times. The private providers can cherrypick in concentrated population area.

Mr. Ed Crotty

I would call it trying to achieve clustering, which we have talked about before. We all try to provide care and meet the packages. If one has the capacity one will accept a package and if one does not, one will not accept a package. It would be wrong to accept a package that one could not fill. I would not call the practice cherrypicking.

Should the easy and difficult cases be distributed equally rather than leave the not-for-profit organisations to pick up the geographically difficult cases and the private providers to choose the easier cases?

Mr. Joseph Musgrave

The HSE hires a large number of staff in rural areas and does not provide a lot of care in Dublin. That is partly due to the way services are commissioned and incentivised by the HSE. In terms of my group, about 60% of a total membership of 70 provide care in Dublin. The way services are designed to be commissioned means the HSE does not take on a lot of the Dublin work. Also, there is no time for my members to cherrypick as they are given only a few minutes notification about a package. Each case is relatively anonymous because one gets only a brief profile. I would push back on the accusation of cherrypicking mainly because providers do not have the time.

In terms of the deeper point, when these interventions happen or when a package is awarded, it is usually as a result of a failure in the primary care system.

What criteria do a provider use to make a decision in two minutes?

Mr. Ed Crotty

The information given varies from CHO to CHO. One is given the initials and gender of the person, a small amount of information on a person's needs, plus the hours and times of day a homecarer must be available that have been stipulated by the public health nurse. Typically, it could be an hour in the morning such as between 9 a.m. and 10 a.m. or half an hour at lunchtime. Providers are told the total number of hours per week, the breakdown of hours, the gender of the person and the address.

What happens when a person lives in a rural county? Is the location of the client a critical factor in deciding whether a provider accepts a package?

Mr. Ed Crotty

Yes. If one does not have a carer who works in Arklow, Ennis, Mooncoin or wherever one cannot take the job.

Mr. Liam O'Sullivan

I thank the Chairman for acknowledging the role played by family carers. We reckon that 360,000 people provide such care and they continue to do so. Even when there is a good homecare package there usually is a family member who steps up to the plate in terms of the relationship with the care providers and the public health nurse. Ideally, if we had a more well developed primary care system more of that work would fall to professionals.

The Chairman made a point about respite care. The evidence is clear and the figures do not lie. There has been almost a 40% reduction in the provision overnight respite care. I cannot fully understand what that is about. Is it about regulation? Is it about the HSE getting out of that work because it is difficult to do well?

The Chairman asked how needs are assessed. We would like that information. We know from our research that assessments are done in different ways. We asked the HSE to tell us how long people must wait but their people in many of the regions could not tell us. We asked for a figure on the length of gap between the assessed clinical need and provision. Unfortunately, many units were unwilling or unable to give the information, which is beyond belief. The HSE's service plans from 2010 to 2018 have referenced the idea of developing a single assessment tool. It remains unclear to us why this has not been rolled out to date.

Ms Clare Duffy

The Chairman asked whether there is respite for carers. There is absolutely none. There is a requirement for a person lucky enough to get a carer's allowance that he or she provides at least 35 hours of care each week. Many carers provide 168 hours. I am entitled to 26 days off a year but they have no entitlement. We believe that carers should receive a minimum of 21 days of respite a year as part of the statutory homecare scheme where a full-time family carer is present. This provision is increasingly important because, which has been mentioned, increasingly the family member is included in the homecare package of support. Where one gets a homecare package that requires two people to use a house or whatever, it is the family carer who is the second person. Therefore, they are being professionalised and subsumed into the system but for no reward. A carer in this case is not entitled to a single day's respite in a year.

The following was stated in the presentation by Family Carers Ireland, "We believe that this would be best done by formalising lead responsibility for home care with the family". Is that what Ms Duffy is speaking about? Does she mean negotiating with the family member on how best to give flexible homecare support?

Mr. John Dunne

No. In the context of the legislation, there are three systems in Europe. First, the Scandinavian system ensures the lead responsibility lies with the State so the State takes responsibility. The problem there is that if one rocks up to the hospital, care home or local health agency and says "I am worried about my mother", the staff there can say, "Go away. We are looking after her".

Second, in former Eastern European countries it is the responsibility of the family. Therefore, the State says it will do nothing for a person as he or she has family and it is their job to provide care. We are saying both of those systems would be unacceptable in Ireland.

Third, we cite the Portuguese model, not because it is perfect but because it has a pretty clear constitutional kind of text. In that instance, the primary responsibility lies with the family but the State recognises a duty to support the family in fulfilling its primary responsibility in regard to care. We think that model strikes the appropriate medium.

In terms of some work on hospital satisfaction, roughly about 18% of people in hospital do not have a family member visiting them or keeping in touch. We interpret that as 80% of people having family carers while 20% do not.

I echo what Mr. O'Sullivan said and appreciate the comments the Chairman made about carers. On the subject of respite care, our sense of what is happening is that there are stepdown beds. Many respite facilities have been taken over to deal with hospital discharges. Good, bad or indifferent, that is a dilemma.

Let me outline the biggest issue with respite. There has been no serious discussion about respite. Last year, there was a programme broadcast called "Prime Time - Carers in Crisis". A week later the Minister for Health announced that ten new facilities would be opened to provide respite and I thought to myself, Mother of God, the speed of reaction is wonderful. Later I realised he was responding to the previous year's "Prime Time" special that highlighted buildings around the country that had been bought for respite but were not being staffed and so they came through. He announced, with some satisfaction, that there was €10 million in extra spending, all of these new beds and that there would be a great increase in respite this year, although mainly for people with disabilities. So far this year the level of respite provided is down and I do not know where it has disappeared to. Stepdown beds and hospital discharges have absorbed or taken over a lot of capacity.

Ms Audry Deane

To add to what Mr. Liam O'Sullivan mentioned about the single assessment tool, Age Action sits on the multi-disciplinary group which is supposedly developing and rolling that out across all CHOs. He is right that there are serious delays and technical issues, and the HSE is burdened with many competing demands. This is a tool which could make one part of it work much more easily. It is not being prioritised and we are deeply concerned.

Mr. John Dunne

In fairness, it has funding to run a pilot scheme and is beginning to dip its toes in the water.

Mr. Pat McLoughlin

The Chairman raises an interesting issue relating to what are the triggers. Our study paints a picture of three quarters of family carers having no training. Some 48% look after the spouse for their total waking time. Most carers were on medication, with 57% on medication for blood pressure. This is often the time when their own care breaks down. One in four were frail or on the road to frailty after just one year of caring. Going back to the point I made to Deputy O'Reilly, because of the difference in regulation of respite in the home or in a facility registered by HIQA, we were not able to recruit the staff because of pay rates or HIQA happened to require a continuity. We had to exit that service. We have a respite centre with 11 beds which has been lying idle for two years and we now hope to contract with a private provider to provide it. Some 1,100 people were denied one week's respite which would have been superb for those with dementia and for carers. We have a dichotomy with the registration and regulation of home care as opposed to residential care. There is a very elaborate system and I am not denying that it needs to be, but when one holds a mirror to what is available in respite in the community, it shows the lack of provision to support family carers.

I cannot fully acknowledge the value of the contributions made this morning. I have known nearly everybody who has come in as a witness for many years. We use the term "service providers" for these organisations. That is true but I think we should underline the service they are providing to us today, which is about their reflection, intelligence, insight, problem-solving and analysis. We have a conundrum as a committee. How will we pull that into different streams? I apologise that I was not here at the start of the meeting. I think what I have heard is a proxy for many of the ills and challenges in our health provision. I am deliberately not saying "health system" because I hear over and over about all the things that clash with each other in that enterprise.

It would be useful for the committee to reflect on what it has heard this morning aside from each of the particular things that witnesses have said to us. I can list things such as hospitals versus the rest of the health system, statutory underpinning versus schemes that are ad hoc or on an administrative basis where the rope can be pulled out from under a body, and whether it is person-centred or system-centred. There are social aspects to consider. Other Departments are involved, such as the Department of Employment Affairs and Social Protection, which has useful involvement in employment. There is the housing issue. This committee was involved in work earlier this year when it collaborated with a couple of other committees. We can talk about this over and over with regard to health but some of the solutions are with other Departments. The institutional care clashes with community and home care. I have said it before. I see young people going into nursing homes and institutions and cannot but think that some or all of that relates to the rationing of supports on the other side. There are issues with respite to address. Those are my opening remarks which I wanted to make public. There was much directed at us as a committee.

Ms Deane from Age Action talked about eligibility and entitlement going back many years. That brings us back to the statutory underpinning versus administrative schemes. Do people have any comment on it? If I am not mistaken, there is a commitment to introduce legislation that opens up a fair pitch to play on. That would have the objective of redressing the pull away from where we want people to be. Mr. Pat McLoughlin from the Alzheimer's Society of Ireland made striking comments. Am I right in what I am saying? Since the recession ended at the end of 2013, the witnesses gave a scenario that €11.2 million of State funding was provided with voluntary funding going from €2 million to €3 million. That is the opposite to the end of a recession. Is that more or less what the witnesses are all experiencing? If it is, we have a mammoth issue with where our health system is going. It has been a year and a half since Sláintecare, our ten year plan, was made. We are still not on the road with it. We have a microcosm here of the large ills in the system. I think Mr. John Dunne talked about social care vis-à-vis home care. Will he address that? Where does care reach people beyond their home, if it does?

This is maybe a provocative question. We all hear about the hospital crisis, the trolley crisis and the winter issue. What is the "trolley crisis" for the witnesses? Is there something that can be expressed that captures the witnesses' side of trying to provide for and support people in the community? We all have the vision of the trolleys backed up. Nobody sees what is going on here. One can go around the edges of a hospital or photograph the ambulances backed up but one cannot do so here. What is the image here that captures starkly the essence of the problem for people and families?

Mr. Pat McLoughlin

I will answer specifically as it relates to the Alzheimer's Society of Ireland. It is scary for us to provide 68% of all community dementia services. I do not think there is another sector where the Government and State are reliant to that extent on one organisation to provide services.

That organisation is paying its staff at 2010 rates. It has increased its fundraising by €1 million. We have ten minibuses which need to be replaced. We authorised one last week which had travelled 437,000 km and was 12 years old. These minibuses are to gather people in the community and bring them into centres. Approximately 80% of those get a maximum of one or two days' service. We have relied on the goodness of fundraising, especially corporate fundraisers, with companies giving us money. We have not been able to pay our staff what we should be paying. We are competing with the HSE. Our fleet is in difficulty. None of the €3 million that we earn will have been achieved by six months because one cannot go out after Christmas to start fundraising again. All of our fundraising is late in the year, from Tea Day to Memory Ribbon Day. It means money is being spent without us knowing whether it will actually come in. We have depleted our reserves to keep going for the State. We cannot do that any more.

That does not address what it is like for an Alzheimer's patient to be in an emergency department in the country at the minute, given what is going on. They are in a crowded, noisy environment with poor signposting etc. People with Alzheimer's on waiting lists for hip operations and cataracts cannot access our day services because there is no point in having somebody with difficulties of that nature trying to attend a day service. It has become extremely difficult to paint that picture in the public arena with the system of funding we have. We are seriously underfunded as a sector. We do not want to provide any more services. At this stage, we would prefer to say that we should de-risk the situation. We cannot provide. We would welcome the HSE providing in the counties in which we have no service. We have no wish to be the top provider. We are advocating on behalf of all people with dementia. Who provides the care is a separate issue.

Mr. McLoughlin mentioned, when advocating on behalf of people with dementia, the involvement of people with dementia in structures and fora. That reminds me of the UN convention's reference to the will and preference of people. There is a question of how people are brought into it. Mr. McLoughlin said that fundraising was increased by €1 million. Am I correct in saying that is 50%, from €2 million to €3 million?

Mr. Pat McLoughlin

Yes. We are also heavily reliant on volunteers in our service. That is the reality of what we face. We rely on 19 branches in 15 counties. That means our cost of fundraising is much lower than for many other organisations. We had 1,000 people collecting for us on Memory Ribbon Day last week. They were all providing voluntary services for us. Many of those are staff of different companies, school kids etc., who came out on a winter day and fundraised for us. We get huge support from the public and corporate Ireland but there does not seem to be an appreciation of the seriousness of dementia in the country and that carers are under serious pressure. Some 10% of persons with dementia are under 65 and 11 more people will be diagnosed today. At least one of those will be under 65 and there is no service for that person. It is an extremely difficult situation. The Alzheimer's Society of Ireland would welcome discussions with the committee on dementia and Alzheimer's because we are not mentioned in Sláintecare. Our submissions are mentioned but dementia is not. We are concerned that if we are not mentioned and that bus is leaving the station, we may have missed ten years in getting it to be a priority on the political agenda.

Mr. Liam O'Sullivan

I thank Senator Dolan for his support of family carers and people with disabilities for decades. Home care is not sexy. It is difficult to do well. It is messy. It is provided in private by family members and increasingly by paid care workers. I would put it back to representatives and to the media to reflect on how they respond to those trolley crises that dominate the narrative and consider more nuanced responses that can shift attention towards home care, primary care and keeping people well at home, out of nursing homes as much as possible.

Ms Clare Duffy

We do not have a winter crisis. The crisis is all year round. It is not as visible as the trolley crisis the hospitals have. Ours is invisible because these people are at home, denied a service. It is convenient for the Government that they are so invisible but not so convenient for us. Visualising that, one of the lows of this year for me was when I had to help a family to complete an application for the fair deal scheme for their daughter who has schizophrenia and multiple sclerosis, who is the same age as me. It was seen as a significant success for her to get a nursing home place within 20 miles of home. One can walk into a nursing home and see people who are my age there because there is no other option.

Ms Audry Deane

Senator Dolan asked when it becomes visible. Ms Duffy is right that it is totally invisible, with pain and suffering behind closed doors. I am privileged to work with people who have such empathy and caring in their daily job, with the respect and dignity they give to every call they take. The quiet desperation spills over to become overwhelming and people cannot cope any more, and that is a stark indictment of our health services.

The issue addressed in Sláintecare is trying to bring home the message that the invisible becomes visible when there is a lack of home care, support or community structures. They become visible very quickly in our hospital system when there is a lack of home support. I think that is a key message of Sláintecare.

Ms Audry Deane

We need to remember that an acute care setting is the most expensive place in which to deliver care. It makes a lot of sense to start sorting out these problems in the community at practically half the price. It will take committed planning and a political and societal dialogue.

Mr. Joseph Musgrave

I will respond to the Senator's first question about statutory entitlement and whether that would help with the pull away from where we are. It has the potential to. My concern, which I raised in my opening statement, is that there is a lack of a dialogue and of a roadmap. If the statutory entitlement will do certain things in three years, how will we get to a point where we are prepared for it when it lands? My members are not being invited in to figure out how the statutory entitlement will work. I have a set of national standards. How do I use that as a tool to make sure my members are prepared for the statutory entitlement? I do not have high confidence in how it is being done. It seems completely opaque. I echo what others have said about how difficult it is to give a voice or evocative image to isolation when one has disenfranchised people, people with disabilities or people with chronic and acute conditions. In the modern world, we react through Twitter with 140 characters and such. It is difficult to give an image. It would be a disservice to give a flippant response about how it is because the real world is complicated and we cannot give a simple snapshot, given that we provide home care to such a wide range of people, whether through families or care workers.

I thank our witnesses for coming in and for giving us the benefit of their insight into the care system.

A number of things come to mind. Over the years I have made numerous references to the way the care has to be distributed and the competition between community-based care, institutional care, private hospital nursing home care and public hospital nursing home care. There seems to be a great deal of competition between all those sources. The demand is getting bigger. The demographics mean more caring is required. There are competing demands. For example, 20 years ago a house probably cost £60,000 or £70,000, which would have a relatively small mortgage. Family members were able to meet mortgage repayments and provide care at the same time, very often with carer's allowance, a supplement or part carer's allowance. That day is gone. The demand from mortgages is much bigger and the repayments are the equivalent of one wage. We have a number of demands and added to them are the family circumstances. I find in my area that if a person is returned from hospital to be cared for at home very often the family will opt for a local nursing home if it is nearby. The critical issue is whether it is nearby, both for respite and support.

Questions have been raised about carer's allowance. The idea in the assessment of carer's allowance is to refuse almost everyone at the start. An interesting factor in respect of young people, teenagers and those in their 20s is the idea that their carers are doing no more than is required to care for a normal child or teenager. It is rubbish. It is crazy stuff. It meets the financial requirements but it does not deal with the requirements of the child or family concerned. I have seen instances where it was outrageous to suggest the child required no more attention than a normal child of the same age. It creates a serious issue for the family if that idea is relied upon.

There are people from other countries outside the European Union who may be here illegally and who work as carers. We need to talk to the Department responsible for dealing with them to enable them to remain in the country and provide a service because there is a demand for it. There is not much sense telling them they do not comply with regulations so they must leave. It is fine from an immigration point of view but it does not solve the other issue we have. There is a necessity to do it. They are very good caring people from a number of countries.

We also need to recognise that caring in the community requires a huge input. It is not simple. In years gone by it was portrayed as simple, inexpensive and readily available but it is not. It requires huge input. I heard what the various speakers said about costs. There is a requirement for greater budgetary investment in the area. It has to be balanced. I am saying it as a member of the Government party. I cannot say we will do it straight away. It is not possible. If we compare it with the situation in 2007 or 2008, we see the experience from then on was not great. Somebody mentioned austerity. The real reason there were cuts is because there were not sufficient resources to meet the demand and the payments. The Government could not pay. There was nothing there. There is a danger we might separate that in our minds and say it was austerity that caused it. It was not. Austerity was a result of circumstances that arose and it was not possible to pay the public or private sector or both depending on the extent to which they were affected. We also need to look at the extent to which we have competing groups in the same business. It would be much better to have a single authority or body seamlessly delivering the service and having responsibility rather than a multiplicity of people trying to provide the same service and competing with each other for resources and staff. They provide the best they can in difficult circumstances. We need to look at the area again in a different light, taking into account the increasing demands, demographics and costs involved and find out how best to provide a good quality service without putting patients at risk or creating an impossible situation for family carers and at the same time make it possible to bring people into the service.

I have also noticed that when families apply for care support in the home, they usually get a package or part of a package and they might have to wait some time for it. There is no time to wait. Time may be a very serious issue at that stage. A week can be a very long time and sometimes it takes two or three weeks to put it into place. The next issue is that some of the carers are not as experienced as others. It puts pressure on their colleagues. In some cases lifting equipment, for example, is not being used because there are not the people to operate it. There have been instances of an older person caring for another older person. It creates huge problems for both. If there is any lifting involved, an older person will not last too long at it. It cannot work. It cannot happen. In those circumstances there is a need for more systemic intervention in terms of respite care for a week or two weeks in order to give the carer a breather if he or she is a family member. It would also give the caring system a bit of space to allow it to do its work.

What I have said comes from my experience of dealing with cases, some of which I am dealing with at present. They are all reflected in the issues that are being raised. They are reflective of the increasing demand. The issue is how to meet those issues while at the same time providing people with good quality care and the services to which they are entitled. They will all say they never looked for anything before in their lives. That is the opening statement of people, some of whom are 80 years of age. They have never looked for anything previously in their lives. They rightly feel there is an opportunity for the system to which they contributed all their lives to come to their rescue and they deserve it.

I overlooked Mr. Dunne before Deputy Durkan spoke.

Mr. John Dunne

I felt I owed Senator Dolan an answer to his question about social and personal care. There are technical answers. There are activities of daily living and instrumental activities. There are lists of the kind of things one would do. The pattern is drifting. In general there is less of a focus on well-being, mental health and social needs. It is all about getting in, getting the person up, dressed, washed and possibly fed and then getting out again. There are complications around medication. One of the real shocks to me arose because we had been providing in-home and respite care where there was a family carer present and then we started going into homes were they were not present. If a family carer and the care worker pass each other when one is coming in and the other is going out, one of them can say the person being cared for did not take his or her tablets or would not do something else and the information passes seamlessly into the family that is managing it. Where there is nobody else there, the caseworker cannot administer the medication. There is a struggle. It is recorded that the person did not take his or her medication. It is not a very effective form of care. That is what I mean. Let us be fair to the HSE. It is operating on a shoestring budget in this area. It is trying to make €10 million go as far as €100 million. It is being distilled to the bare minimum. I am not saying there is an easy answer other than resources. It is not about people wilfully setting out to do this.

This is a function of the way the system is going.

I will move on to Deputy Durkan's points and I will start with the question on resources. I accept the point that it is not austerity, but I am getting a bit resistant to the resources line because my experience and observation is that when the system wants it, resources are available. I will give two examples. When there was a problem with the Waterford Crystal pension scheme the State came out very strongly and effectively said it had messed up because it did not translate something into law, and that is the reason the scheme crashed, but it could not afford to bail out the scheme to the tune of €30 million or €40 million. Within three months the State had bailed out the pension schemes of a series of quangos to the tune of €1 billion. That did not get any headlines, but there is the contrast. The State could not afford €40 million to help out one group but it could help out another group no matter what the cost. My main challenge in terms of resources is that the increase to the health system this year is €2 billion but more or less half of that will go on pay and a large chunk of it is for pay restoration. We are not ready for pay restoration. The resources are not there. Our sector is not doing pay restoration and we are not being funded to do it either. The State is getting very precious about that and saying it cannot afford it, but that is where a lot of the money is going.

I hate to interrupt, but on almost a weekly basis we have before us a group of people who are in favour of pay restoration and who are very aggrieved that it has not come. They are central providers to the system. There are competing demands and everybody must be cognisant of that and the situation is not a simple one, but we must also be alert to the fact that we could tip over the edge again very quickly. We saw it happen once. I have a feeling that the boom was one of the worst things that ever happened in this country. It made us more avaricious in terms of what we deserve, as opposed to what we can afford. Occasionally it comes to our attention that there are people at the bottom of the system that get squeezed. They do not have the clout or the lobbying power to change anything. The people we are talking about now are the vulnerable, the ill, those with disabilities and the elderly. They are not in such a great place and they say that on a regular basis because that is how they feel.

We are also told on a regular basis that our spending on health is on par with the highest spenders among OECD countries. That leaves us in an awkward position as well. The question is what we can do.

It is very difficult for people working in home care, very often on very low rates of pay, to be told on the one hand they have never had it so good and that the economy is booming, and on the other hand that the shillings are not there. It is about priorities. It is very difficult for someone on a very low income to hear about a proposal on tax cuts when the proposal for a modest increase for those on low pay is not entertained. It comes down to priorities. What we hear at the committee time and time again is people, not with extravagant pay demands, who never look for tax cuts, talking about a crisis in recruitment, exactly as has been outlined for us today. The issue is one of priorities. We know how high the health spend is. Often, it is very tough for those who are on the lowest pay to advocate, in particular home care workers, who are very much isolated although they are a big part of the health service.

It is also a fact that home care providers who work for private agencies are competing with the need for the private agency to make a profit. However, I do not think it is fair to say we have people coming in endlessly looking for money. They are not looking for large amounts of money. There is an element of having to prioritise. I would like to see the case for increased home care prioritised because it is a really good value for money service.

Mr. John Dunne

I accept that it is a question of priorities but my point is that there is a differential standard. The public sector provides for itself. It does not provide for the rest. I did an exercise in the context of pay restoration. Mr. McLoughlin sounds like he is in the same position as the Alzheimer's Society of Ireland. Let us take the case of somebody on our staff who after the cuts in 2011 was on a salary of €25,000. We abolished incremental scales. Let us also take somebody in the HSE who was on the same salary of €25,000 in 2011. If neither of them got promoted, the person working for us would be still getting €25,000. The situation will be changed next year for the first time. The person in the HSE, through normal incremental and pay grants, is on €31,000 now. I am not saying that is right or wrong. I am saying that is a fact.

Mr. John Dunne

It has been said that people are coming before the committee and looking for pay restoration but that is not what I am looking for. Rather, it is the opposite; I am saying I do not know the reason we are knee-deep in pay restoration. Actually, I do, it is blue flu. However, we are not ready for it as we have not funded the restoration of services.

I referred to the 13,000 additional whole-time equivalent people employed in the HSE in four years. That is equivalent to €600 million in additional pay per annum. There are 135,000 people working in the HSE, including people working on a part-time basis, but when one boils it down there are 116,000 whole-time equivalents. In December 2014 the number was 103,000. The cost of the 13,000 additional staff is approximately €600 million.

Mr. Joseph Musgrave

I want to respond to Deputy Durkan's two points. HCCI came in with a submission today that was not all about funding. While we said we would welcome funding, even if funding increased dramatically what we are saying is that the system is not designed to cope with increased capacity. There are changes that can and should be made right now, around how we commission the supply of carers and professionalising the workforce. I hope the committee can influence those changes. I would welcome more funding but my submission is largely not about funding.

I would hesitate to support a single provider of care. One can take my view with a pinch of salt given who I represent, but at the same time a monopoly provider of care would not take advantage of the expertise in the system and probably not deliver value for money and would put the committee in a position where one is overseeing a mammoth body with very little accountability, which I suggest would be even less than is now the case. I do not see how that would provide the answer.

Mr. John Dunne

It is called the HSE.

I am loath to interrupt. That is true up to a point. On a regular basis the committee is faced with the private sector and the public sector, very often competing with each other. Sometimes they overlap and at other times they do not overlap and there are gaps in the system. As one can see from looking at the colour of my hair, I come from an earlier generation and I remember when there was only one provider and everything went through that system. It may have had its restrictions and disadvantages, but there are multiples of providers for almost everything in the health services nowadays. They all have good intentions, are well structured and they all compete in the marketplace and very often they almost bump into each other in the provision of services. That is my observation from dealing with constituents on a daily basis.

I was delighted to hear Mr. Dunne clarify what he said about the differential standard because that chimes with what I heard him say. There is a point which goes beyond this discussion. When we hear that the HSE is making more money available, very often a certain amount that money does not add an extra iota of service. It would serve every interest to say that if an extra €2 billion is invested, X amount of that will increase the cost of delivering the service.

People know what will enhance a service and Deputy Durkan made the point that we could tip over the edge again. All that I am hearing about this morning is people with disabilities and elderly people in need of care and the organisation has gone over the edge. That is a tricky situation and we need to be clear and forensic in our language when we talk about these things. Staff have legitimate and valid expectations that conditions would start to improve but that is not just some staff. People do not care or know who is providing the service, it is simply that the service is there for them.

I apologise for missing some of the meeting. I am concerned about the differential in the wages. Am I right in saying the pay restoration amounts to about a €5,000 to €6,000 difference in a carer working in a HSE hospital and someone working outside of a hospital?

Mr. John Dunne

No, it just has to do with salary progression. Someone who is-----

There is a differential of €5,500 to €6,000 between the same person who started off in the HSE in 2010 or 2011 at a €25,000 salary rate and a person working in the family caring sector, is that correct?

Mr. John Dunne

Yes.

I assume then that people are leaving the family caring sector and going into the HSE or is there a drag between both sectors because I know that Mr. Dunne spoke about labour shortages?

When it comes to the competency versus QQI level 5 that Mr. Dunne mentioned, what do carers have in other countries? Are they doing this HSE style competency or is it a QQI level 5?

I refer to under 65s. I have heard there is an issue with getting home care in the case of a degenerative neurological disorder for people under 65. I ask the witnesses to elaborate on their experiences of that. I am being told in the community that with rapidly progressing conditions, which are a surprise to many families who have never had to engage with family caring services or the HSE's services before, it can often take six to eight weeks of a family dealing with a devastating diagnosis combined with the patient having to deal with a diagnosis and having no experience in the provision of any sort of care because they have had no hassle up to this point before a home care package is approved. When someone has one of the really progressive neurological disorders, there is no coming out of it, the end is nigh, it is complex and it is terminal. I am hearing that this is causing undue annoyance and stress to families at a very difficult time and by the time the package is approved, the person could be 70% of the way through their condition and it leaves for a very difficult experience. Is that common? What sort of impact does this have on families in these cases?

Mr. John Dunne

There are three different questions. The pay differential is leading to a bit of a drag but not a very significant one. It has to be said the HSE is not an attractive place to work so that is a factor but when people do leave us, they leave for massive pay rises.

Is that a case of them going to the HSE or is someone spotting them and headhunting them?

Mr. John Dunne

They are not just going to the HSE, they are going into the public sector at large.

It is the norm around Europe that there is a minimum qualification for care workers. I could not say-----

Does Mr. Dunne have evidence of that?

Mr. John Dunne

We would have to dig it out but I am certainly aware of-----

I am not being smart and I am on Mr. Dunne's side in this, but if he comes in here and he tells us there is a QQI level 5 and a HSE competency, it is reasonable to anticipate that I would ask what other countries do.

Mr. John Dunne

I cannot give the Deputy chapter and verse on it but I am happy to send her details afterwards.

Mr. John Dunne

The reality is that there are recognised qualifications for care workers around Europe and it is still within the framework here that people are required to work towards this qualification and they are required to have two modules of it but that is after ten years of initially saying we would all have this qualification by 2012. We have been rowing back on that requirement.

I refer to home care packages for under 65s. The reason for the problem is that home care packages are effectively part of the older persons part of the HSE. They can be awarded outside of that but it is an awkward case. When the Deputy said it can take six to eight weeks I was thinking that was fast as opposed to slow but then she mentioned the magic word of "approval." It is not unusual for someone to get a letter saying he or she has been approved for a home care package and that he or she will get further correspondence when it is possible to provide such a package.

It takes six to eight weeks for approval and then it could be another chunk of time?

Mr. John Dunne

Absolutely.

Has Mr. Dunne ever seen a case where the person had died by the time the package came through?

Mr. John Dunne

Yes of course, it happens all the time and I am not being smart about that.

What can I say to that.

I refer to a point Mr. Dunne made on the lack of consistency of services across CHO groups and that it can vary substantially from one CHO group to another. If and when we introduce a statutory system, will that bring consistency to the provision of home care?

Mr. John Dunne

Not automatically. The statutory framework will presumably define a set of entitlements. There is no statutory basis for any sort of carer's support or home care. We would have to go out on a limb with bits of the Health Act, 2004, to come up with a statutory basis. The new legislation will be clearer around that but it always will be subject to resources. There will be this consistent legal framework and it will then feed out. By the time the legislation is enacted, presumably we will be RICOs and we will have forgotten about CHOs and hospital groups. Presumably there will be about six RICOs around the country, each of which will have a chief officer whose job is to balance the budget against the demands and resources and all that will have changed is that there will be a more standardised set of requirements but the decision will still have to be made.

I refer to the legacy issue. If there are 1,000 home care workers employed, by definition there will be more home care work done than an organisation that also has 1,000 physiotherapists because they will help with the work. Therefore, the legacy spending patterns will also help to shape this. This is about system and policy and not about picking out an individual and saying that person is trying to cause trouble. It is about understanding the system does not work and then how it might be changed but there will be a limit to how consistent it will be as long as there are regional bodies.

Before we finish that point, I refer to Sláintecare. There is a proposal that the hospital groups and the CHOs would become an entity-----

Mr. John Dunne

That is the RICOs.

It is proposed that there would be a budget within that entity.

Mr. John Dunne

Yes.

A person in one section could decide to cut home care hours because its budget is at an end but the hospital consultant will say that cannot be done because the trolley count in his or her hospital would go up as a result of people not being supported at home. Conversations such as that will happen within those organisations which will hopefully limit the extremes of budgetary cutting.

Mr. John Dunne

It will not be down to those conversations. There will not be two budget silos with two different gatekeepers, there will be a single budget silo with a single decision maker and that is going back to the decision we had before the CHOs where there were integrated care systems, and that is a progressive move. There are all sorts of other issues and a major issue is the legacy of staffing structures which determine how the majority of the money is spent. These numbers are like telephone numbers but we are only tinkering at the margins because most of it is fixed in pay and buildings etc. That is a truism.

Mr. Joseph Musgrave

On Deputy Kate O'Connell's question and Mr. Dunne's response regarding time lag and home care packages, Sláintecare will, it is hoped, bring a step change in how we manage chronic conditions and interventions such that it is not essentially at crisis point that home care packages are awarded, as is commonly the case now. I understand Care Alliance Ireland has done some work on the priority given by the different CHOs per condition, which varies wildly. For example, we have anecdotal evidence that a person entering palliative care will be prioritised by some CHOs but not by others. For a family member living in Dublin whose relative lives in Cork, trying to rationalise the system does not make sense. Home and Community Care Ireland gets a lot of inquiries from people about the system and how it works, as I am sure do all of the other organisations. The impact is huge on families. Home and Community Care Ireland is a representative organisation for providers but I still get calls from people from abroad seeking help about the system and how it operates.

What I am hearing is that if the palliative services are involved things move faster. It appears the word "palliative" strikes a chord in the HSE. However, a person who is terminally ill and has a 12 week window does not necessarily tick the palliative box, such that families have to jump through a lot of hoops to get services. As stated, sometimes by the time all of this has been done the patient has died. To my mind, this affects not only the family's experience of that illness but that of the carers and doctors involved. It is frustrating for GPs and community pharmacists to see people without services.

Mr. Joseph Musgrave

Absolutely. What the Deputy describes varies across the CHOs. In many cases, the mention of "palliative" care does speed up provision but in other cases it does not, which is frustrating. This goes to the heart of the Chairman's question as to whether Sláintecare will bring uniformity. Currently, some CHOs are on a paper based reporting system for home care but others operate an electronic system for home care. CHO1 has a new finance system and CHO7 has an entirely different finance system. We hope Sláintecare will bring some cohesion but we are trying to deal with the system as it is now but it is difficult to get any consistency. Therefore, when designing national guidelines and spreading information one has to constantly add the caveat that the situation may be different in a particular local area.

Mr. Pat McLoughlin

I would like to clarify some issues. A person under 65 years of age who receives a dementia diagnosis today might not need any support for some time. We would encourage people-----

I was speaking about degenerative neurological disorders that progress rapidly.

Mr. Pat McLoughlin

In the case of persons with a cognitive disorder, we would encourage them to continue doing what they are doing and to remain in employment, if possible.

I am not speaking about such people.

Mr. Pat McLoughlin

It is when conditions deteriorate and become complex that a difficulty arises for patients and their carers. The society and the HSE would encourage people to remain involved, to develop coping skills, to obtain cognitive training, to seek peer supports and to join social clubs. There are things people can do to live well with dementia but there comes a point when needs are more complex and services need to kick-in quickly for them and carers.

Mr. John Dunne

Sláintecare specifies that the new integrated structures will seek evidence to inform their investment, which means they will carry out an assessment of needs in their area and respond to it. I say that not convinced it will work, but in principle.

On the subject of palliative, I would like to give an example of a case that came to mind when it was mentioned earlier. An elderly woman was discharged from hospital on a clear death trajectory having been told by the hospital that there was nothing more that could be done for her. When the family responded that they could not cope, they were told to find a nursing home place for her. When they did so, hospital staff contacted the nursing home and instructed staff there not to give the woman the bed because they said they needed it. The woman went home and died. As Ms Duffy said, people are afraid to complain no matter what happens to them for fear of losing whatever services they have. However, when someone dies a complaint can be made. Family Carers Ireland received a complaint. We facilitate people in making complaints. In fairness, the director of nursing and the consultant in the hospital were distressed and apologised profusely. I have an image of this woman sitting on her suitcase in the snow in a car park waiting to be picked up to be brought home to die. The response from the two other people who were in the room, who were responsible for bed management, was that they were just doing their job. The family did not want to take the matter any further. I would have been happy to but the family decided to walk away from it. It was mentioned earlier that "palliative" is a magic word. That is not always the case.

Mr. Liam O'Sullivan

On the degree of discrepancy around research, in one region we were advised by the HSE that only two clients were on the waiting list but the same area reported a massive gap between assessed need and provision. Meanwhile in another area there were more than 600 people on a waiting list but it was estimated that the majority of the assessed need was provided for. This highlights the disparity in assessments which leads to the reference of postcode lottery. This level of discrepancy and disparity cannot be good and fair. There will be always a level of disparity within clinical assessment protocols and guidelines but the current level of disparity is of concern to us.

I thank all of the delegates for being here and for their presentations. All of the organisations working in this area, private, community and voluntary, are providing an excellent level of service to people. Are there services that are perceived to be offering a service but are not doing so? In other words, have any of the organisations here had to take over the care of people because other services being paid to care for them were not providing an adequate service? Does that happen and, if so, on what scale?

Mr. John Dunne

It does happen, sometimes with extremely serious consequences, but it is not a widespread problem. This is not a question of private sector good and voluntary and public sector bad or vice versa. There is good and bad practice in the private sector and good and bad practice in the voluntary sector. We have to be vigilant. We are required to report such situations but there is never any follow up as to what happened. I am mindful of one issue in respect of which we reported an organisation. To my mind, it was a relatively serious issue, but these incidents can be also one-off. There are thousands of carers going into houses every day. I would not like to be held personally accountable for what every one of them does tomorrow at 11 a.m. In regard to the organisation we reported, when the HSE was drawing up a list of people who would be charged with the most intensive, difficult, challenging cases, that company was on the list. I did wonder about that. I do not have any further insight but what I am saying is factually correct. I am not saying the system is broken. It is a rare situation but it does happen, definitely.

Mr. Pat McLoughlin

Carers complain that when a multiplicity of carers are going into a house it causes difficulty, particularly for the person with dementia. Carers are task timed and they have to work quickly and move on. However, I have only anecdotal evidence in this regard because we have not done any study on it.

If statutory home care is introduced-----

Ms Audry Deane

When it is introduced.

My apologies, when statutory home care is introduced, there is an expectation that this will come at no cost but obviously will be a cost to the client. I have heard people speak of it being a free service but it cannot be a free service. What is the estimated ratio in terms of cost-sharing?

Obviously, the client will have to make a contribution and the State will make a contribution. When it does come in, what do the witnesses believe the ratio will be? Will it depend on the amount of service required? Will it be a specific percentage.

Ms Audry Deane

That is an excellent question to round up the discussion and focus our minds because there are no easy answers to this. Researching and then collectively as a society deciding on the funding model will be absolutely critical, which is why it nests under Sláintecare. We need to take a good hard adult look at how we fund the provision of care in this country. Will it be from general taxation or a blend of social insurance? Not dodging the point, but it is early days. Our colleagues at Sage Advocacy are doing sterling work on the deep technical aspects of this and we are feeding it into the Department. I do not think we can answer the question today. Age Action is the largest body representing ageing people in the country and we ask that all elected members of both Houses who are here in front of us do their part to ensure the dialogue and societal conversation that must be held in this country on how we will fund this - it will not be easy - is adult, respectful and sustainable.

Mr. John Dunne

I do not think anybody envisages it will be for free. We have stated on the record for a long time that we are willing to talk about co-payment. I mentioned earlier the insurance model because it seems to deserve serious consideration but the great chance to do this in the context of the universal social charge has been possibly lost. With regard to the fair deal model and integrating the two funds, the problem is the fair deal model is made up of three contributions and if people are caring for someone at home it really does not make a whole lot of sense to take most of their income or savings, and if the house is being used as a care facility it seems a bit rich to take that. It would need to be a different model. I agree with Ms Deane that it is early days in the discussion. To be fair, nobody is suggesting it will be for free.

Ms Audry Deane

Nor does Age Action.

Mr. Pat McLoughlin

We have no indication of the cost but some research has been done on intensive homecare packages that were initially concentrated on people with dementia in residential care in hospitals. It was very interesting to see that no night cover was sought. People who came out of hospitals were able to attend existing day care centres. Our experience is that carers will not abuse intensive homecare. People do not want other people in their houses unless they absolutely need them. It would be a game changer in terms of delaying people going into residential care, which would be a significant saving to the State if we look at the trajectory of the number of the beds that will be needed. It will be a major change. We have no information on what the funding model should be or could be.

Mr. Liam O'Sullivan

In Ireland we have an interesting relationship with taxation. There is often a discussion on wanting Scandinavian-type services but there is not always the wider societal sense that this takes a level of taxation. One of the risks if people do have to pay for part of the care, and I do not have strong evidence for this, may be self-neglect. People may decide they will not pay for it so they will not get it and it may lead to unintended consequences. We must balance to what extent the State makes a decision on this.

There are various models throughout Europe and Mr. Dunne alluded to the insurance model, which probably would be preferable. There is a percentage of direct payment with the rest coming later. It will require cross-party political leadership to state this will cost us collectively but it will be worth it because we want high quality care, to value family carers and, increasingly, paid care workers because this is the type of society in which we want to live.

On behalf of the committee I thank Mr. John Dunne and Ms Clare Duffy from Family Carers Ireland, Ms Audry Deane from Age Action Ireland, Mr. Joseph Musgrave and Mr. Ed Crotty from Home and Community Care Ireland, and Mr. Liam O’Sullivan, Mr. Pat McLoughlin and Ms Joan Carthy from Care Alliance Ireland. We may return to this topic at a future date.

The joint committee adjourned at 12.35 p.m. until 9 a.m. on Wednesday, 19 December 2018.