Louise O'Reilly (Dublin Fingal, Sinn Fein)
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The purpose of this meeting is to engage with officials from the Department of Health and the Health Research Board, representatives from Age Action Ireland and the National Community Care Network and a health economist, Professor Eamon O'Shea, in respect of to the very important issues of rights, resources and regulation of home care. This meeting will be held over two sessions. For our first session, I welcome Ms Frances Spillane and Mr. Robert Deegan from the Department of Health and Dr. Jean Long from the Health Research Board. We will engage with Age Action Ireland, the National Community Care Network and Professor O'Shea in the second session.

I draw the attention of the 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 only to 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. Any opening statement made to the committee may be published on its website after the 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 Houses or an official either by name or in such a way as to make him or her identifiable.

I ask Ms Frances Spillane to make her opening statement.

Ms Frances Spillane:

I thank the committee for the invitation to attend this meeting. I am joined today by my colleague, Mr. Robert Deegan, principal officer in the older people’s projects unit, and Dr. Jean Long from the Health Research Board.

Improving home care services so that people can live with confidence, dignity and security in their own homes for as long as possible is a key commitment of Government. Home supports are crucial to helping older people and, indeed, people of all ages with particular care needs to remain where they want to be, namely, at home in the surroundings with which they are most familiar and comfortable.

This is an opportune time to meet with the committee because the Department has commenced work on designing a new statutory scheme and system of regulation for home care. I look forward to hearing the views of the committee as well as the perspectives of the other speakers here today. Before I speak about plans for the future, it is important to first consider where we are at the moment.

I will mention rights and eligibility for home care services first. At present, home care services are provided through the HSE on the basis of assessed health care need and no personal contribution towards the cost is required. The HSE provides services both directly and through service level agreements with private and voluntary sector providers. The current system relies heavily on family carers, who play a crucial role in helping older people and others that need help to remain living in their own homes for longer. These carers not only make a profound difference to the health, well-being and quality of life of those that they care for, but also make an important and often unacknowledged contribution to the economy. This is reflected in the 2016 census results published earlier this month, which identified that about 195,000 carers are providing a minimum of 6.6 hours of care per week.

I will now consider resources. The HSE will spend approximately €370 million on home care in 2017, out of a total budget of €765 million for services for older people. This figure excludes funding for the nursing homes support scheme. The HSE’s national service plan provides for a target of just over 10.5 million home help hours; almost 17,000 home care packages; and 190 intensive home care packages, co-funded by Atlantic Philanthropies, for clients with complex needs, particularly those living with dementia.

In budget 2018 a further €37 million has been made available to further strengthen supports for older people, particularly to facilitate speedier discharge from acute hospitals over the winter period. A significant proportion of this additional funding will go towards home care services. The resources available for home care services, while significant, are limited, and with the increase in our elderly population, demand is growing year-on-year. Accordingly, the services and allocation of resources to individual clients, require prudent management on an ongoing basis as demands for services increase. In this context, those clients who are assessed and approved for home care, and who are not being provided immediately with a service, are risk-assessed and placed on a waiting list for a resource as it becomes available. It is important to note that many people also purchase home care services directly from private providers.

I will now address regulation. Home care services are among the health and social care services for which there is currently no statutory regulation. However, the HSE is progressing a range of measures to improve home care provision overall, to standardise services nationally, and to promote quality and safety. This includes a national procurement framework for home care services, which came into effect in 2012 and was put out to tender again in 2016. This provides a mechanism for quality assurance. Providers are also monitored through service level agreements with the HSE.

I will now address the plans for the new statutory home care scheme. While the existing home care service is delivering crucial support to many people across the country, it is recognised that home care services need to be improved to better meet the changing needs of our citizens. The Department is of the view that a stand-alone funding scheme designed specifically for home care is needed, together with an effective system of regulation. In 2016 the Department’s intention to bring forward legislative proposals for the regulation of home care was indicated in a report entitled Better Health, Improving Healthcare. The programme for a partnership Government signalled the Government’s commitment to the introduction of a uniform home care service. As Minister of State with responsibility for Mental Health and Older People, Deputy Helen McEntee played a key role in advancing this undertaking, tasking the Department with the development of a new statutory scheme and system of regulation for home care.

The new scheme will improve access to home care in an affordable and sustainable way. It will provide transparency around service allocation and individuals’ eligibility for services, and ensure that the system operates in a consistent and fair manner across the country. The scheme will also result in more effective integration with other health supports including nursing, therapies, and other primary care services. A system of regulation will be designed to ensure public confidence in the standard of the services provided, and to bring Ireland in line with best international practice. It will be important to get the balance right in this regard and to ensure that the system of regulation is effective and not overly bureaucratic.

I will now speak about progress to date. As an initial step in developing the new system, the Department commissioned the Health Research Board, HRB, to undertake a review of the home care systems in place in four European countries. The review, which was published in April 2017, will help us to ensure that Ireland’s new home care scheme and system of regulation is informed by international experience. The committee will shortly be hearing from Jean Long of the Health Research Board, who will speak in more detail about the findings of this review.

The Department also launched a public consultation process on the financing and regulation of home care in July of this year. Over 2,600 responses to this phase of the consultation process were received. The purpose of this public consultation was to enable us to find out about the views of service-users, their families and healthcare workers on current and future home care provision. Preliminary analysis of the submissions has been undertaken, and we would be happy to share details of some of the initial findings this morning if that would be of assistance to the committee. A full report on the findings of the consultation will be published early next year. This will inform the Department’s development of the new funding scheme and regulatory arrangements.

The process for determining the type of home care scheme and approach to regulation that is best for Ireland is complex. A significant amount of analysis is needed to develop policy proposals on the form of the home care scheme and the system of regulation that will apply to these services. It is important that we get this right and take the time required to ensure that these measures will be successful, affordable and sustainable.

I thank the committee for inviting us to present here this morning, and I look forward to continuing engagement throughout the process of developing the new home care scheme.

Dr. Jean Long:

I thank the committee for inviting me to make a presentation of our findings. On behalf of the Department of Health, the HRB commissioned an evidence review titled Approaches to Regulation and Financing of Home Care Services in Four European Countries. The countries examined were Germany, the Netherlands, Sweden and Scotland. It was published in April 2017 and covered two topics.

The first topic was the regulation of formal home care services. All four countries have explicit national legislation and policy covering formal home care services. The national government controls the vision for home care, but regional governments oversee the selection of home care services that will be publicly funded. Support to keep people living in their own homes is the main principle underpinning home care policy in all four countries. There is a long tradition of regulated formal home care in the Netherlands and Scotland, whereas regulated formal home care was introduced later in Sweden and Germany.

Excepting Sweden, three of the four countries have national a set of quality standards for home care services that are guided by legislative acts. In addition, the three countries have an independent inspectorate to assess quality standards. Quality standards have been determined by the regulator with input from patient representatives in Germany, the Netherlands and Scotland. To achieve accreditation, home care service providers in Germany and the Netherlands are expected to operate using an in-house quality management system, and are also responsible for ensuring that staff are properly qualified and suitably remunerated. Annual quality audits are carried out by external bodies in Germany and the Netherlands, and accreditation is awarded if the audit results meet the standards. Scotland operates a national annual compulsory registration scheme, and registration is determined on the basis of meeting basic standard requirements. Germany, the Netherlands and Scotland have common national minimum training criteria for home care workers.

In Germany and Scotland, random inspections are carried out on home care providers annually to ensure standards are adhered to. In addition, specific complaints are investigated separately. The Netherlands monitors home care services via annual surveys, and inspections are only carried out in response to specific complaints.

In Sweden, regular inspections, surveys and responses to specific complaints are completed. Germany, the Netherlands and Sweden publish results of home care service quality inspections on publicly accessible websites. Germany, the Netherlands, and Scotland operate sanctions if quality standards are not adhered to. In each country, regulatory bodies are or appear to be partly funded through contributions made by long-term care insurances, or by registration fees paid by care providers.

On approaches to assessing and financing home care services, need rather than the ability to pay for home care services is an underlying principle of formal home care provision in all four countries. Germany and the Netherlands have long-established long-term care insurance schemes which facilitated the provision of formal home care services and these have recently been subject to reforms, which included revised needs assessments and eligibility entitlements alongside the introduction of increased or additional co-payments. Scotland and Sweden have a long-standing rights-oriented home care services sector funded through taxation, which are increasingly being rationed by stricter eligibility criteria and the introduction of fixed fee services and co-payments.

All four countries have formal needs assessment which contain documented eligibility criteria that allows a fair and comparative assessment as to the need for formal home care and the level of requirements. All four countries encourage some level of informal care by close relatives to help fill the home care requirement. All four countries have an element of user choice as to how services are provided to address formal home care requirements, with services typically offered in kind or via personal budgets. The basket of formal home care services in the four countries include personal care and help with household tasks. Nursing care is included in the basket of services in Germany, the Netherlands and Scotland and is provided through a separate assessment process in Sweden.

Generally, the literature on the four countries reported that the supply of formal home care could meet the demand, but their actions indicate that countries have taken interventions to either restrict formal home care supply or fund additional demand. For example, Germany has increased the long-term insurance premium for childless people, increased co-payments to 30% of the total formal home care costs, tightened the criteria for how much home care people can receive, and expects families to provide informal care where the formal care service cannot meet the demand. The Netherlands has waiting lists and has reduced its needs-based service allocation by tightening access criteria. Scotland has increased the budget allocated to home care and asked citizens who earn over £16,000 to pay for household tasks. Sweden has also tightened criteria entitling its citizens to home care. Small co-payments are required for all services in Sweden. Tax free credits are available to taxpayers who buy private home care for their elderly relatives.

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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We will take questions in groups of three so I ask the witnesses to take note of them. Senator Conway-Walsh must leave in a few minutes so I will include her in the first block of question, if members are agreed.

Colm Burke (Fine Gael)
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Sorry, I have a problem about that. I am here at the committee every day -----

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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Senator Burke is the first person on the list, then Senators Kelleher and Conway-Walsh. I said that Senator Conway-Walsh would be in the first block.

Colm Burke (Fine Gael)
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I apologise.

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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The first block of questions is Senators Burke, Kelleher and Conway-Walsh.

Rose Conway Walsh (Sinn Fein)
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As I am not a permanent member of the committee I am very happy to come in after my appointment and ask my questions then.

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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That is fair.

Colm Burke (Fine Gael)
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I have no difficulty with the Vice Chairman's proposal. I apologise, I thought that the Vice Chairman was treating -----

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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We will take the first three questioners, including Senator Conway-Walsh, in the first block. We will proceed with Senators Burke, Kelleher and Conway-Walsh.

Colm Burke (Fine Gael)
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I thank the witnesses for their presentations and the huge amount of work which they have done on this. Their studies have been very comprehensive. I have concern based on looking at how we legislate here. I mentioned it earlier but in 2012 I produced a Private Members' Bill in 2012 on professional indemnity insurance for medical practitioners, Senator James Reilly had brought in a Private Members Bill when he was a Deputy in 2009, and it is only this morning that a regulation finally went through to make it compulsory for all medical practitioners to have professional indemnity insurance. That is a seven or eight year time period from when the legislation is discussed to it being put through. The fair deal scheme was similar. Problems arose in 2004 on nursing homes and it was 2009 before the fair deal scheme was set up. I published a Private Members' Bill on home care regulation on foot of the Law Reform Commission report which was also a comprehensive report.

We are discussing new regulation and new legislation and we are talking about the initial stages. How advanced is the Department on new regulation and legislation? If we start the process of bringing forward draft proposals, whether by regulation or legislation, what timescale are we be talking about? If it is legislation, when are we likely to see the heads of a Bill on this? The Law Reform Commission has done considerable work on this area and I am interested in what kind of legislation it has proposed. I understand that the companies which provide home care have a code and this works reasonably well but there is no legislation governing who can provide home care. What timescale are we talking about? To be fair to the two witnesses here and the Departmental officials, much work has been done but we question is now about taking decisive action in view of there being huge growth in the numbers of people over 65 years between now and 2030. My concern is that it is currently 637,000 and will be over a million by 2030.

Colette Kelleher (Independent)
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I thank Ms Spillane and Dr. Long for their presentations. It is a real indication of how seriously the Department is taking home care. The witnesses rightly commended the Minister of State, Deputy Helen MacEntee, for her leadership on this, and she has passed the baton to Deputy Jim Daly who I am confident will progress this with the same rigour and enthusiasm. I have two general points. First, it is the clear preference of people themselves, older people, those with dementia who may be under 65 years, to live at home in their own communities for as long as possible. That preference for home care needs to be at the heart of the Department's deliberations. It is an obvious point but it is one that can be missed. Last year Age Action Ireland, the Alzheimer Society of Ireland and UCD were involved in a report which is a very good source document which can be consulted, there is no need to do it again. We have loads of consultations and have done all that, and got a huge response. It is the wish among individuals and we are talking about ourselves. We are all living longer. It is not an abstract point, but an enlightened self-interest in getting this right.

Second, and this is something Ms Spillane mentioned, is the position with regard to the 195,000 carers. With support from the State, in partnership, they can continue to do the work they want to. They will not down tools when a home care system is brought in.

They want to be involved but they do not want to be carrying the burden by themselves. They are urgently awaiting this scheme. I accept that progress is being made, but we cannot let deadlines slip. I draw the attention of the committee to the fact that 4,000 of these 195,000 carers are under 15 years of age and almost 2,000 are over 85 years of age, an increase in the latter of 35% according to the census. The will and preference of individuals and the strain on carers must be front and centre.

Ms Spillane mentioned that €370 million is being spent on home care. It would be helpful if she would compare that spend with what is being spent on residential care. What budget is being allocated for home care in 2018 relative to 2017, in respect not only of older people but home care specifically and what money is being set aside for dementia-specific home care, which is a very particular form of home care in terms of the manner in which it needs to be provided? Consistency and duration of care in this area is critical. One cannot hurry people with dementia.

Like Senator Burke I would welcome more information about the proposed regulatory system, including when it will come into force. There is currently no entitlement per seto home care such as applies in respect of residential care. Resources are limited and there is no statutory regulation and as such there is an urgency in this area. During statements in the Seanad on the fair deal scheme, the Minister of State, Deputy Daly, promised that the consultation on home care would be completed by the end of this year. We are now told it will not be completed until early in the new year. I am concerned about slippage in this regard because as I said the 195,000 carers and those for whom they care cannot wait.

My next question is to Dr. Long. In the four countries which she studied there are systems of regulation and funding regimes. Is it true to say that we are lagging behind significantly in terms of a proper system of home care?

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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I remind members and witnesses to ensure their mobile phones are switched off as they cause interference with the broadcasting of the meeting.

Bernard Durkan (Kildare North, Fine Gael)
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My apologies for leaving the meeting for a short time but I had to make a number of emergency calls. I agree with the comments of the last speaker in regard to home care. I have a couple of questions for the witnesses. In regard to the private providers, how is that system working? Has it been assessed in terms of operation, efficiency and cost? Is it cost-effective? I recognise that it is better for provision to be made in this way rather than for the system to take it on board but I would like to know whether it is effective, cost effective and efficient. By "effective" I mean effective to the person receiving the care.

This is a cross-departmental issue. I note that in recent times there have been a number of refusals of carer's allowance to people who would appear to me to be eligible. Some people are reluctant to have strangers in their home. They have a built-in resistance to it, which I can understand. It is important that in situations where family members take time off work to care for an elderly or sick relative they are paid for doing so by the relevant Department. I am doing all I can to ensure this is done. In the case of dementia, it is not possible to dismiss a person's need based on appearance and so on. These cases are not easy to deal with because those concerned require care, attention and constant supervision.

In regard to regulation, is Ms Spillane satisfied with the extent to which the regulations are likely to be applied throughout the system, particularly in terms of contracted carers? The current system is welcome in that households are now visited a number of times throughout the day by different carers as opposed to the previous system whereby a single carer was assigned to a particular household for a number of years, often to the detriment of his or her own health and thus leading him or her to also needing care. We need to be conscious of the carer in the household nearing the situation where he or she will also need help and assistance.

To what extent will the care in the home scheme be extended by way of the existing carer in the home and the contracted carer system? In other words, how is it proposed to meet demand? The fair deal scheme is cumbersome, to say the least, and it is unlikely to improve. What I cannot understand is why at a time of scarcity in terms of residential care beds the HSE is attempting to close down existing units. Despite the increase in demand, a number of residential beds are being closed or used for purposes other than catering for the additional demand. I am aware of two public nursing homes where this is happening.

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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Would Ms Spillane like to respond to the questions thus far?

Ms Frances Spillane:

Senator Colm Burke asked how advanced we are in terms of the proposals. Other members have also raised that issue. As pointed out by Senator Burke it takes time to prepare legislation. It took the NHSS a long time to develop its fair deal scheme. We are at the early stage of developing our policy proposals. On a positive note, the literature review is a very good basis for planning our policy proposals. A new unit has been set up in the Department, headed by my colleague, Mr. Robert Deegan, known as the older people's project unit, which is tasked with developing policy projects. We are still resourcing this unit but the hope is that it will help us to progress more quickly. I will defer to my colleague, Mr. Deegan, in terms of providing more detail on the timescale.

Mr. Robert Deegan:

This area is being prioritised in the Department. We have a commitment on additional staffing which will help in this regard. As recognised by members, it takes some time to develop these types of proposals, particularly when they involve legislation. As I said, this area is being prioritised within the Department and we are moving it along as quickly as we can. The experience referenced in terms of the fair deal scheme is indicative because there are parallels between the two processes but we intend to do this quicker than was done in respect of the fair deal scheme.

A number of members asked about regulation. The Department recognises and acknowledges the need for regulation of home care services. This service is either funded by the HSE or privately. The new system will help to promote quality and client safety. In addition, it will ensure that the public can be confident in services and that the services being provided to their relatives and loved ones are of the type they need and are of appropriate quality. To develop the regulatory system we will be considering the experience of other jurisdictions. Dr. Long's report will be very helpful in this regard. We will also be taking into account the expertise in this country. For example, we will engage with HIQA and we will consider Senator Burke's Bill which builds on the work of the Law Reform Commission. This process will be about learning what we can and adapting. We cannot pick a system and introduce it in Ireland. Any system would have to be tailored to the particular requirements we have in this country.

I should mention, however, that while we do not have a statutory scheme of regulation, the Health Service Executive took a significant step towards quality assurance in 2012 when it introduced the single procurement framework for external providers of home care services. The framework includes quality standards for governance and accountability, person centred care, complaints management and training and qualifications. Providers are monitored by the HSE through service level agreements and are required to provide a range of information on their services. It is our intention to build on this good work and place the regulatory system on a statutory footing as quickly as we can.

In terms of a timeline for the development of the regulatory system, it is our intention to make parallel proposals on regulation and the statutory scheme. The reason both processes will be done in tandem is that we want them to mesh well, as opposed to having them develop in isolation.

It is interesting to note the finding of a recent opinion poll commissioned by the Health Information and Quality Authority, HIQA, that 76% of respondents mistakenly believed home care services were already being regulated. It is not only experts in this area but members of the general public who expect these types of services to be statutorily regulated and it is our intention to follow through on that expectation. I will be pleased to answer questions members may have on regulation.

Ms Frances Spillane:

Senator Colette Kelleher spoke of the importance of taking account of people's preference to live at home for as long as possible. We are familiar with the excellent Age Action report to which the Senator referred. Similarly, when we designed the consultation process we were anxious to hear the views of people who avail of services and we went to great trouble to offer an easy read version of the questionnaire. The responses received represent a good cross-section of opinion. As indicated, we can provide members with some details of the survey if they would consider that helpful.

Senator Kelleher also referred to the large number of carers who are waiting anxiously for the scheme. The research done by the Health Research Board makes clear that the formal home care schemes provided in other countries are very much viewed as complementary to family carers. Ideally, one engages in extensive consultation and takes account of people's views when offering a service to an individual. We would like to move in that direction and we are examining this issue in the disability sector through the task force on personalised services. Many of the lessons emerging from the task force's work are relevant to this area also.

Senator Kelleher also asked a question on the budget for home care. The home care budget for 2017 is €373 million compared with €940 million for the nursing homes support scheme. Funding for the former equates to approximately 40% of funding for the latter. The Senator also asked how the home care budget for 2017 compared with the budget for 2018. As I indicated, an additional €37 million is being provided for older people's services. A significant proportion of this - probably two thirds of the total - will be for home care.

I do not have a specific figure on funding for dementia but I can check this for the Senator. The Department is in discussion with the HSE on the service plan. If the Senator wishes, we will provide the figure in writing at a later stage. As she will be aware, we have the scheme of intensive home care packages specifically for dementia and these have worked out very well.

Colette Kelleher (Independent)
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The scheme is limited to 130 people, as opposed to 500.

Ms Frances Spillane:

While the number of packages is limited, it has, nonetheless, very good outcomes for those who are in receipt of them.

The Senator also asked a question on regulation. I emphasise that while she is correct that there has been some slippage on the preparation of the consultation report, we intend to work on our policy proposals in parallel with the analysis of the consultation. We are in discussion about who will do the consultation on our behalf but it will be done early next year, partly as a result of the excellent response we received. The preliminary results we have are confined to comments made online because we were able to complete that work quickly as they were only a proportion of the total responses. I will ask Dr. Long to respond on whether we are lagging behind other countries.

Dr. Jean Long:

We hand-picked, independent of the Department, the four countries we reviewed because they were very experienced in home care and it is obviously better to learn from people with experience. While Ireland is lagging behind other countries, given our younger population, the need has not arisen as early as it arose in the other countries studied. Once we realise the need, it is important not to jump in with a solution that is not based on learning elsewhere. The main reason for the evidence review is to ascertain what others have done, what has been their experience and what they have learned along the way. That is what the evidence review will give the Department.

From our review and reading, as Mr. Deegan also indicated, we found that many of the practices used in the four countries we studied are similar to the practices used here on an administrative basis. While this is obviously not sufficient - regulation would be better - it is not the case that nothing is happening in the system.

Mr. Robert Deegan:

I will answer Deputy Durkan's questions. In terms of private providers, under a longstanding arrangement, there has been a mix between services provided by the HSE voluntary organisations and private companies. The issue is one of ensuring these three strands mesh well and we will emphasise this in the development of the new scheme. We cannot have different providers working in isolation. We need them to work together to improve outcomes for service users and build services around the user, as opposed to the provider of the service.

The issue of informal care was raised a number of times. We fully recognise that informal carers are the backbone of home care provision. What we need to do is ensure informal carers are appropriately supported to deliver care, which is the reason the issue also arose in the consultation process. We need to ensure that we get the balance right between family carers and formal carers and that they work effectively together. This is a complicating factor because we have providers who view the matter from a formal provider perspective. We need to ensure they also see the perspective of family carers and that we design the system in a way that supports family carers to do what they want to do. It is clear that people want to support their family members by helping them to stay at home. However, they need the support and help from services and service providers to do this.

Deputy Durkan also referred to regulation and asked how we would meet demand. Demand is increasing and there are demographic challenges facing the country. It is a great success on the part of the health service and the country in general that people are getting older and the number of people in the older age bracket is increasing. We need to ensure the system is appropriately supported to supply the services people need on the ground.

Ms Frances Spillane:

To add to Mr. Deegan's comments, Deputy Durkan also asked whether private providers are cost effective. As Mr. Deegan stated, the services offered by private providers complement in many ways the services directly provided by the HSE. From speaking to HSE managers, it appears private providers can provide services at times when HSE services may not be available. This sometimes helps families, for example, if services are needed between 5 p.m. and 7 p.m. when people are returning from work. This provides greater flexibility.

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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Is Ms Spillane suggesting the HSE does not provide services between 5 p.m. and 7 p.m. or that there is a particular need between those hours that only the private sector can meet?

Ms Frances Spillane:

That is not solely the case but it has been suggested that there can sometimes be greater flexibility. That is even more relevant where families contract with a private provider.

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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We will get an opportunity to discuss the constraints on the voluntary providers later. As someone who represented home help staff in a previous life, I would count the directly employed home help staff in the HSE as among the most flexible in the workforce. I would question anyone in the HSE who might make that assertion. I will get a chance to ask my questions in a little while.

Ms Frances Spillane:

A minority of home care is provided at the moment by private providers and voluntary providers. That is part of the analysis we are doing at the moment. We are looking at all of that. We have been unable to get a large amount of information to date with regard to some of these providers.

Reference was made to the carer's allowance. As the Deputy rightly pointed out, that is the responsibility of the Department of Employment and Social Protection.

I was asked how we would meet the demand. That is a crunch issue. We recognise that there is unmet need at the moment. With everyone living longer, which is a positive thing, it means demand is going to increase. The research done by the Health Research Board examined the funding provided in Scotland, a country with a population similar to Ireland. The current funding of home care in Scotland is approximately double what we are providing. Certainly, there will be a need for additional resources to provide effective home care services. That underlines why we need to come up with a funding scheme that is as fair and equitable as possible.

Reference was made to the nursing home support scheme and the possible closure of some public nursing homes. A capital programme was launched in 2016 to provide funding for refurbishment and new build of public nursing homes. The overall funding available for the programme is in the region of €500 million. The programme is being rolled out up to 2021. Many of the major developments are towards the end of that period.

Bernard Durkan (Kildare North, Fine Gael)
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I do not see why it should be necessary to discontinue the use of one particular building, if it can be refurbished and modernised, only to replace it with another one. Demand is increasing all the time. It is obvious that the way to deal with this is to provide extra accommodation as opposed to the same accommodation under a different roof.

Margaret Murphy O'Mahony (Cork South West, Fianna Fail)
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I welcome the officials and I thank them for attending. I acknowledge the fantastic work that the former Minister of State with responsibility in this area, Deputy McEntee, has done with older persons to date. I hope the Minister of State, Deputy Jim Daly, will continue to carry the baton. Like Senator Kelleher, I am disappointed that the report the Minister of State promised for the end of the year has been put off until the start of the new year. Like anything, there are bound to be teething problems.

After housing issues, home help requests and home care requests form the biggest part of the workload in my clinics and in my office. I know the officials are aware of that and of the major problems that exist.

I have some questions about the new scheme. Can the Department confirm that the new scheme will be free to the clients? Some people have asked questions about it. They are concerned that clients may have to contribute financially to the new system. Will it be more available? It is difficult to get home help hours. Will it be more available under the new system?

Other speakers touched on the area of carers. I wish to pay tribute and emphasise the extraordinary contribution they make. In particular, I wish to pay tribute to informal carers who are not being paid. They do this on a voluntary basis and out of love for family members. Are there any plans for more respite to give those family members a break?

Respite needs to be made more formal and planned better. I know many people who have to fight to get respite every time. They may be going on holidays in June but they are offered the respite in July. Perhaps under the new scheme there could be a more formal arrangement with regard to respite.

At present, home care and the home help hours seem to be for morning and evening only. It is a one-size-fits-all arrangement. Informal carers can often manage mornings and evenings themselves but may need help during the middle of the day. When we are developing the new system, it is important that a one-size-fits-all model does not creep in. We should listen to what people require.

Rónán Mullen (Independent)
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I welcome our guests. It is estimated that 195,000 carers provide a minimum of 6.6 hours of care per week. I think that was the metric cited. Does that include people who are receiving the full or partial carer's allowance? Is that how the statistic is measured? What is the number of people cared for? I presume that in some cases more than one person is being cared for in a particular situation.

People often talk, rightly, about the amount of money that is saved for the State as a result of the work of unpaid informal carers. It is also relevant with regard to people receiving carer's allowance when one considers the amount of that allowance compared with what it would cost to provide full-time care in a nursing home or were we to apply the cost on an hour-by-hour caring basis. A vast amount of money is being saved to the State. That is not the only point. The great desire of people to be cared for in their own homes and to live in their own homes for as long as possible is relevant as well. It is wrong to think of it purely in money terms. However, it is important that the State would always have in mind the value been given to the State by these people working in the home. Do the officials have an estimate for the value? What metric does the Department use? Given the figure on the number of carers, how does the Department measure the value they give to the State in financial terms? What is the estimate of that value? Is the carer's allowance subtracted from the potential cost of full-time nursing home care? Do we simply look at the difference? How is it measured? What is the estimate of the figure? Are there particular areas of care in geographical terms, for example, certain parts of the country, or certain types of need or disability that the Department regards in particular? I will not refer to these as black spots, because that is a rather stigmatising term, but I have in mind areas where the Department have identified particular problems.

My family are involved in caring for my father. We are grateful for the supports we receive. Occasionally, I get calls from people who may not be caring for someone with dementia but may be caring for someone who is singularly in need physically due to age or infirmity or whatever. I am sometimes shocked at how little care is actually available to such people. Does the Department have a handle on whether there are particular groups or categories of people in respect of whom more needs to be done? Is there an issue between different parts of the country and different branches of the health service in terms of the resources available to meet needs? Are there parts of the country where, to put it bluntly, someone is less likely to get the care needed for a loved one or where another person is less likely to get the care or the support he needs?

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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There is a hybrid model in operation involving public, private and voluntary actors. Let us consider the value for money argument. For example, let us suppose every penny spent by the HSE was invested in front-line care.

The same would be true of voluntary bodies, most of which are run on a shoestring and they do not have fancy offices or cars, though the large private agencies have shiny corporate headquarters and all that goes along with that. According to the Department of Public Expenditure and Reform, the average cost of a home help hour is €24.20 but it is considerably less for the HSE to provide it directly. What accounts for this increase? Ms Spillane said that private providers were responsible for 40% of care so are they exerting an undue influence? I have heard figures of up to €40 per hour but I presume that is for specialist intervention. Can the witnesses comment on the question of value for money in this regard?

On the question of regulation and standards, we are all looking forward to many happy years of retirement so we all want sufficient checks and balances to be in place for a time when we are more vulnerable. Regulation would be much easier if there was one single employer. Mr. Deegan referred to regulation by service level agreements. How do these work? I know how the system works when one applies for the tender but how does it work from the point of view of regulation?

Dr. Long said that Scotland had double the budget with a similar population. Can she talk about the model they use in Scotland and the mix between residential care and home care? If Scotland spent more on the latter, the assumption must be that less would be spent on residential care. Every euro invested in home care is money that can be spent on where people want to be for as long as possible, which is in their own homes. If Scotland spends double what we spend does it mean there is a corresponding increase in the provision of the service or is it that they just provide more hours while having less in the way of informal caring or a lower dependence on carers allowance? A lot of people get carers allowance but many do not and if those people were to declare a one-day strike, this country would come to a complete standstill. They are not paid, formally or informally, but they get on with their work. Does Scotland supplement these people to a lesser degree because of the greater investment it puts in?

Ms Frances Spillane:

Deputy Murphy asked whether the new scheme for home help would be free to clients. It is a major question that we have to figure out. We have to come up with a scheme that will be as equitable and fair as possible. During the consultation we specifically asked questions on funding in order to get a feel for how people felt about it. We asked if people would be willing to contribute towards the cost of care and, if they were in receipt of services from the HSE, whether they would be willing to supplement them by paying for private care to top up what they were getting. The preliminary analysis reveals that the majority of respondents would be willing to contribute. This shows that there is an understanding of the fact that there are finite resources but it will be a sensitive issue and is one of the main ones we have to develop. The public consultation was launched at the end of May and we had responses from 2,500 people. We have analysed the results from some 1,700 who responded online.

The Deputy also referred to the important role of carers and the need for respite, and this is also a priority. As the Vice Chairman said, things would close down if we did not have the supports which carers provide to older people and vulnerable people in general. I agree that we should not have a one-size-fits-all policy and we are trying, as a priority, to provide a person-centred service as far as possible. We are looking at regulations that are reasonably pragmatic and not overly bureaucratic. Service providers would be regulated as distinct from locations, which is what happens in the case of residential care.

Mr. Robert Deegan:

A question was asked about the delay in the consultation paper. We extended the consultation period by a month in response to views expressed by advocacy bodies who needed more time to pull together their responses to the consultation. We also got a bigger response rate than we were expecting so it is taking a bit longer. It is being prioritised, however, and we have done our preliminary analysis, a flavour of which we could give to members if that would be helpful.

Senator Mullen asked how much it would cost to replace carers and to put a value on the service they provide. We have not put a value on it but it would be a very big figure. In reality, one can never replace the informal provision of care by the families and friends of people who need it. It would be impossible to fill the void with formalised structures.

Rónán Mullen (Independent)
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Is there a reason the Department has not attempted to put a value on it?

Mr. Robert Deegan:

There is no particular reason and it is something we could look into.

Rónán Mullen (Independent)
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It is important in doing budgets and it would justify things.

Mr. Robert Deegan:

I would have no argument with that.

Colette Kelleher (Independent)
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The Alzheimer Society commissioned a health economist to provide a figure so one is available. The cost of informal care for dementia was calculated and I am sure the society could send it to the Department of Health.

Mr. Robert Deegan:

The dementia cost would be at the higher end of the scale in terms of intensity of supports. We would need a figure across the range.

Colette Kelleher (Independent)
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I am saying that some exploration of this has already been done.

Mr. Robert Deegan:

Absolutely, and we intend to build on the existing work. As for areas where we feel there are blackspots, one of the major reasons for having a statutory scheme is the lack of consistency in the approaches that are taken across the country. There is better access to home care services in some areas than in others and we will look at identifying particular areas in this regard. Often, in areas where less is available in terms of home care services there are other, compensating, community services. However, we need to make sure there is a standard approach across the country so that people can get the best service possible.

Ms Frances Spillane:

Senator Mullen asked about the figure of 195,000 informal carers. This figure is taken from the 2015 census and represents an increase of 4.4% since April 2011. Some 60% of people who said they were carers were female and, as Senator Kelleher pointed out, 3,800 under-15 year olds were recorded as providing care.

Some 6.6 million hours of unpaid care were provided weekly, an average of 38 hours per carer. That represents an increase of 5% since April 2011. The age profile is quite interesting in that over half of all informal carers, nearly 53%, were in the 40 to 59 year old age group, and those in the 50 to 54 year old age group accounted for 15%. There was an increase of 35% in carers aged 85 and over since April 2011. The figure had risen from 1,300 to 1,700, approximately.

Rónán Mullen (Independent)
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The Chair rightly made the distinction that I did not make clear when I put the question between those who receive carer's allowance and those who do not. There is a figure of 195,000 carers providing 6.6 million hours of care, an average of 38 hours per carer. Some are getting some kind of carer's allowance and many are not because they fall below the threshold due to their existing income, work or such.

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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That is what we were saying. Many people fit in the work of caring, which is work and should not be called anything else even if done for people we love, with other work and we need to make that distinction.

Rónán Mullen (Independent)
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Of those 195,000 carers, how many would get some kind of allowance?

Ms Frances Spillane:

I am afraid we do not have that figure but we can get it and send it to the committee separately.

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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That would be very helpful. There is a distinction to be made between those who do it and fit it in with other work and those for whom it is their primary activity.

Colette Kelleher (Independent)
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Professor Eamon O'Shea might have answers to that.

Ms Frances Spillane:

Moving on to the Chair's questions, she referred to the hybrid model and differences in the cost. Perhaps Mr. Deegan might address this.

Mr. Robert Deegan:

There will be a need to ensure value for money in the new system so that we can provide the greatest amount of services from resources provided for home care. The Vice Chairman mentioned the different figures. We should make sure that, with whatever figures we use, we compare like with like. That is work we will do. We will need greater clarity on how much the HSE costs actually are. We know from initial work that there have been differences in the hourly rate across the country. There is an average figure but within that average there are obviously differences - some are more and some are less than the average. We will examine that as we develop the policy proposals to ensure that we get the best value-for-money that we can from the resources provided. The Vice Chairman also mentioned the regulator.

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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Sorry to interrupt. It is in the case that there is a marked difference in the hourly rate of pay and the rate charged between the private and public sector.

Colm Burke (Fine Gael)
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It is important to clarify that private providers have to pay for things such as administration costs and insurance whereas the HSE is covered. That is not taken into account in the amount that is being paid to employees of the HSE so there is a huge difference.

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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I do not think it is huge, Senator, but I do not know, which is why I am asking.

Colm Burke (Fine Gael)
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It is huge because private providers have to pay for insurance and administrative costs. When the cost of home care is taken into account, one is looking at the figure paid to the HSE employee, not the administration costs, so there is a difference.

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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I am aware of that and I have examined it myself. I have come to my own conclusion but want to ask our witnesses to provide some more information.

Ms Frances Spillane:

Perhaps I could clarify that the average cost of direct home help service provided by the HSE is in the region of €20 per hour. However, the actual cost of delivery varies depending on whether the hours are delivered during core times from Monday to Friday or outside of core hours in the late evenings or at weekends and bank holidays. There is a mix of direct service provision and external provision. The HSE estimates that the average cost of home care is just under €24 per hour as per the briefing we have received. That is as much detail as we were able to get.

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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We will move on to the service-level agreement, SLA, as a mechanism to regulate and monitor. How does that work?

Mr. Robert Deegan:

It is part of the national procurement framework. As I mentioned previously, it was introduced in 2012 for external providers of home care packages and incorporates quality standards of governance and accountability, person-centred care, complaints management, and training and qualifications. The framework is monitored through the SLA with the HSE requiring providers to provide a range of information on the services they provide with regard to principles of service delivery, confidentiality, the complaints procedure, consent, staff training, governance and management, and workforce-related matters. Under the framework, providers are supervised through regular local operating meetings and reviews of clients' care plans. The purpose of these measures is to promote quality and safety, and ensure a more standardised approach to service provision nationally. I will go back to something mentioned earlier, which has come up a couple of times about the work at peak hours, 5 p.m. to 7 p.m. That is often where private providers come in. There is a bigger demand for services at particular times and that can be where HSE services are supplemented by external service providers, whether voluntary or private providers.

Colm Burke (Fine Gael)
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I have a question about the timeframe. Will we see new regulation within a 12 to 18 month time period? I am not tying the witnesses to a certain time but I am wondering-----

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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Could we get all the questions answered and then we might have a chance for a supplementary?

Colm Burke (Fine Gael)
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It is a question I asked.

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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We will go through the bank of questions that we have and then come back to that at the end if that is agreeable.

Ms Frances Spillane:

We think developing the proposals and having the legislation enacted will take two to three years. The next question was for Dr. Long.

Dr. Jean Long:

The question was about Scotland. Scotland has introduced what it calls reshaping care for older people. It is a new policy. It promises to increase the spend on home care from 6.7% of the health care budget to 13.5% of the health care budget by 2021. It is not focused on residential care but on preventing hospital admissions. Money is being moved from the hospitals to the home care service. It is about providing more complex care for people. Big losers in this process, from what we read, were the people who required a small number of hours of home care. We might not want to follow this. Those people's hours are being moved to care in cases more typically found in a hospital or nursing home. We need to be careful not to just do everything everybody else does but to think about what we will do. We could, by not providing the small number of hours, actually make people's situation worse and increase hospital admissions that we would want to decrease later. It is important to understand the context Scotland is providing that policy in.

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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On behalf of the committee, I thank Ms Frances Spillane and Mr. Robert Deegan of the Department and Dr. Jean Long of the Health Research Board for attending and indeed sharing their valuable expertise with us.

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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The purpose of this session is to engage with representatives from Age Action Ireland, the National community Care Network and a health economist, who is not with us just yet. as we continue our examination of rights, resources and regulation of home care. On behalf of the committee I welcome Mr. Justin Moran of Age Action Ireland, Ms Maria Jackson and Mr. Fiacre Hensey of the National Community Care Network.

I draw the attention of the 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 only to 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. Any opening statement made to the committee may be published on its website after the 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 Houses or an official either by name or in such a way as to make him or her identifiable.

I invite Mr. Justin Moran to make his opening statement.

Mr. Justin Moran:

Good morning Chairman and members of the committee.

Age Action is the leading advocacy organisation on ageing and older people in Ireland. Our mission is to achieve fundamental change in the lives of all older people by eliminating age discrimination, promoting positive ageing and securing their right to comprehensive and high quality services.

I thank the committee for the opportunity to meet you this morning and acknowledge the efforts of Minister of State at the Department of Health Deputy Jim Daly, who has responsibility for older people and his predecessor the then Minister of State at the Department of Healthand now Minister of State at the Department of the Taoiseach, Deputy Helen McEntee in bringing forward the public consultation on how we can develop a statutory scheme and system of regulation for home care services. I acknowledge and thank the officials from the Department of Health when they referred to the extension of that consultation, which was something that Age Action and a number of other organisations had requested.

Goal 3 of the National Positive Ageing Strategy states that it is the policy of the Government to “Enable people to age with confidence, security and dignity in their own homes and communities for as long as possible”. Every political party and elected representative we have met have told us they support this. Yet despite this political will, we have developed a system that drives older people into long-term care prematurely and that treats home care supports more as a way to empty acute hospital beds than to enable an older person to age at home with dignity and independence.

In Ireland, we spend 1% of our total healthcare expenditure on preventative care, significantly less than other European countries. The current policy of prioritising the provision of home care packages to facilitate discharge from acute hospitals means older people in hospital can access them more easily than those in the community. This makes it harder for older people in the community to have their care needs met and, as we heard a few moments ago, it is a false economy. Frail older people who are denied home care have higher rates of admission to acute hospitals, while those who get the support they need see a fall in the number of hospital admissions.

The HSE Planning for Health 2017 report calculated that 50,875 people should be in receipt of home help in 2017. However, as indicated in Table 1 of the submission to members, the number of home help hours provided remained at 2016 levels. These figures reflect home help provided to all care groups. A HSE performance report in 2009 estimated that 85% off recipients were older people. Using this figure, it is estimated that fewer than 42,000 older people receive home help, approximately 6.5% of the population aged 65 and over.

When set against the OECD estimate that 10.1 % of people aged 65 and over need home care this suggests approximately 22,000 older people in Ireland are not getting the support they need. Evidence of this unmet need is apparent in the community. An evaluation of the piloting of the single assessment tool indicated that of 534 fair deal applicants discharged from acute hospitals, 41%, or 219 patients, were not in receipt of home support services prior to admission.

The numbers waiting for home help are increasing.

At the end of December 2016, 2,039 people were assessed as needing home help but waiting for a service. By the end of April of this year, the number of people who were waiting had increased by more than 20% to 2,456. As Senator Mullen said earlier, there are major regional disparities within these figures. A total of 554 people in the community health organisation area 9 were awaiting home help at the end of December 2016, whereas no one was awaiting home help in community health organisation area 7. People who are waiting for hours to become available can be obliged to wait until a client dies or moves into a nursing home. A social worker who was interviewed as part of a research study - Meeting Older People’s Preference for Care, which was highlighted by Senator Kelleher earlier - confirmed that "often the situation is that you are waiting for someone to die to access hours". The reality is that home help hours and home care packages are simply not available in many parts of the country. As Deputy Murphy O'Mahony indicated, we repeatedly hear about this issue from Deputies who are dealing with their constituents. When more older people are forced into nursing homes unnecessarily, families struggle to cope without home helps and more pressure is piled on family carers who are already being put to the pin of their collars. We welcome the additional home care funding that was announced by the Government in last month’s budget. We look forward to seeing this make a real difference in reducing the number of people who are waiting for services.

A flexible and person-centred approach to the provision of home care services is needed to meet the specific needs of the individual, the carer and the wider health society. We need a rights-based statutory model for the delivery of home care. If people are to enjoy the highest attainable standard of physical and mental health, as is their right under the International Covenant on Economic, Social and Cultural Rights, home care must move from a selective model in which services are allocated at the discretion of local management in each community health organisation area to a universal model that is underpinned by rights. In this context, we expect the State to continue to be the main provider of home help and home care services and to function as the bedrock of the home care system. While older people should have a choice of providers, it is critical that the State does not seek to abdicate its responsibility for ensuring all public and private providers meet certain minimum standards. We welcome the comments from the departmental officials earlier today about their commitment to ensuring there is proper regulation of home care. A statutory entitlement to care allows older people to claim their rights and steers policy and resources towards the State's legal responsibilities. Home care services underpinned by legislation can address the absence of any rigorous monitoring, regulation or quality standards. We must change how we think about long-term care. Long-term care should be recognised as a public good, rather than as an individual responsibility. As the number of older people in Ireland is set to continue to rise in the coming years, we have an opportunity to put in place a system that provides a continuum of care for our older citizens and integrates home care with primary and community services and, where necessary, nursing homes and long-term care facilities. We look forward to working with the members of the committee to make all of this a reality.

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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I invite Professor O'Shea to address the joint committee.

Professor Eamon O'Shea:

I will focus primarily on the economics and financing of long-term care. The key point I want to make is that regulation and legislation are not enough unless they are accompanied by adequate resources. In recent years, adequate resources have not been provided in support of the long-term care we need. This is particularly true in the case of home care. If we are serious about changing the structure and the system of care, we have to find some way to provide the resources to do that. We have been really good at policy and the rhetoric of policy. Our vision for what we want, as set out in reports like the Care of the Aged report from 1966 and the The Years Ahead report from 1977 and in various strategies, including the recent dementia strategy, could not be faulted. The implementation aspect relating to that could be faulted, however. I think that is the key to change in the coming years. The key pressure among the numerous pressures that are coming on the system is demography, which will change the landscape over the next ten or 20 years. We have been seeing it coming, but it is arriving now. It will be a key game-changer in the context of the resource question. This is the fundamental area I want to talk about today.

Various countries take differing approaches to the key question of where the locus of responsibility with respect to care should lie. The Nordic countries, for example, tend to favour large Government spending on the welfare state. Countries in southern Europe tend to rely on family care. Where do we lie? Where is the locus of responsibility in Ireland in the context of care provision? De facto, it is with families. Families provide the main bulk of care. When a monetary value is put on the care that is provided in the area of dementia, in which I work, it is found that almost half of the cost of care is borne by families. De facto, care is borne by families. We do not have much data on preferences. Some 60% of the 100 members of the Citizens' Assembly recommended that families should have primary responsibility in this regard and the State should provide strong supports. One third of members of the Citizens' Assembly said that the State should bear the primary responsibility for care, with family support. Interestingly, 87% of members of the Citizens' Assembly agreed that more spending is needed. Regardless of whether one thinks the State should provide more or families should provide more, there is agreement that not enough is being provided. De facto, carers provide care.

I would like to speak about one of the things that have been happening in the home care area in recent years. This has been going on for a while. We have not managed to get sufficient resources. When we have had financial difficulties, the first thing we have done is cut back on community care services. One of the reasons for this is that community services are easier than other services to cut back, or not increase. That is what has happened in recent years. If one divides total expenditure by this country's total population of older people - I am talking about the number of people over the age of 65, rather than the total number of dependent older people - one will find that spending has decreased by approximately €1,000 per capitaover the past eight years. I am not saying that all of those over the age of 65 are depending on the State because of course they are not. The broad figure I have mentioned gives an indication that it is easier to decide not to fund community care services - we sometimes do this unwittingly - than it is to cut back on residential care services because there is a statutory element to services in the latter category. It is also difficult to cut back in the areas of pay and so on. We tend not to support fragmented community care services for these reasons. We need a statutory home care system because it will give people certainty in these respects.

One of the enduring criticisms of Government policy in respect of dependent older people is the imbalance between residential care and community-based care. I am not arguing that we should cut back on residential care, which is needed for some older people. There is no question of this being a case of one or the other. We need to give more support to people in community-based care. At the moment, the balance of care is fragmented and unequal. I would say there is inequality of home care provision across the country. One can be lucky or unlucky, depending on where one lives. It is sometimes more difficult in rural areas. Similarly, there can be difficulties in the community care systems in urban areas. The community care systems we have are very narrow. They tend to focus on home help, which is important and critical, but there are many other things that older people want, which is a question I want to focus on. At present, we tend to determine community-based care on the basis of what suppliers and health care and social care providers think older people want. I suggest we need to move towards a personalised care system that responds to the expressed needs and preferences of older people. Older people and people with dementia have a voice. They know their own care needs and preferences. We should be able to respond to them in a very personalised way. This is not just a question of rights. The emphasis should not be on home care only. We need personalised home care. We need a variety of responses. The focus should not be solely on the provision of more home help hours, although that is important. We need to think about psychosocial responses. We need to think about connecting dependent older people in the communities where they live. It is not good enough just to provide care. We must connect. We make people who are invisible visible in their own communities so that they can live good lives. This is a critical point in any discussion on the development of home care services. While expanding rights to community-based care is a necessary condition, it is not a sufficient one.

We need to think about what kind of services we have.

That brings me to the final point I want to talk about, which is funding. Funding for long-term care here in Ireland has typically come from general taxation. There are good reasons we use general taxation to fund care. General taxation is universal. It is democratically accountable. It yields a large amount of money and it tends to be progressive. However, dependent older people have lost out. General taxation does not trickle down to where we want those resources for older people. In particular, it does not trickle down to flexible, responsive, personalised community-based care. If we simply legislate for more home care and rights, unless we address the funding issue we will not change very much. That means we could opt to allocate more resources. I do not mean allocate willy-nilly as one has to evaluate what is good and what is bad in care. This is not simply a case of allocation for the sack of it. There are alternatives. An alternative option which I spoke about probably 20 years ago was discussed ten or 15 years ago. Some countries, such as Japan and German, use designated social insurance funding for long-term care. Under a social insurance system, people would pay into a fund and in return would get an automatic entitlement. I will not go into how one would create that system, but it is a social insurance system. Such a system would allow for a more protected, and, if we want, designated, visible transparent community-based care system where we could say what we have, what we allocate and what is the impact of that.

When we last discussed this, for example, in the four years between 2002 and 2006 when we were coming up to the fair deal legislation, we as a society felt it would be too costly, it might impact on competitiveness and it might impact on labour markets. We wondered would it be seen as an additional form of taxation. I believe there are significant advantages to a social insurance system and it, along with rights-based community-based care, needs to be part of the debate over the coming years. It works well in Germany and Japan. If we do not think about changing the structure of funding, we need to ensure that taxation gets allocated and trickles down to where we want it.

I would again say that rights without resources for community-based care will not achieve what we want it to achieve. Therefore, if we want to develop high-quality services, if we want to shift the balance where the onus of care is primarily on families, we need to think about what we are thinking about now, which is rights, but we need to do more. We need to think about rights for a rich variety of services for older people. We need to think about rights for a visible equitable system of care for older people. We need to shift the balance from residential to community, although keeping strong residential care services, and we need to think about having the older person, the person with dementia, right at the centre of that decision-making process. Then we would have a credible home care system for an increasing demography that will put considerable pressure over the next ten years on this society.

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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I thank Professor O'Shea. I call on Ms Jackson if she would like to make her opening remarks.

Ms Maria Jackson:

Fiacre will read our opening statement.

Mr. Fiacre Hensey:

On behalf of the National Community Care Network, NCCN, I thank the Chairman and members of the committee for the opportunity to attend today. The NCCN represents 26 not-for-profit home care providers across the country and as we have submitted a briefing document also, I will focus on a few key points.

The challenge for all stakeholders involved in home care provision is how to satisfy and sustain the growing need for the service. We know that keeping older persons at home has benefits for clients, their families and the State. Living and being cared for at home gives the older person a sense of independence and dignity and lets him or her remain part of the community. It is also the least expensive option.

Historically, the provision of the home care service by community providers was carried out on an almost voluntary basis. Today the sector is funded by the HSE, which itself is a direct home care provider, and contracted out to the private and not-for-profit home care companies. The sector is changing rapidly and not necessarily for the better, as the various home care providers compete for business. The commissioning or tendering process, which was expected by some to decrease costs and increase value for money, has to date resulted in increased costs and reduced hours of care due to a relatively stagnant budget. The move to diminish home help funding in favour of more complex home care packages has delayed home care interventions, with the result that older persons now present with more complex needs, require a higher allocation of hours upon engaging with the service and see earlier hospital admissions, all leading to an increased demand for costly long-term residential care.

The terms and conditions of the 2016 tender resulted in varying standards of care and significant inconsistencies in its implementation across the nine CHOs. The phasing out of grant funding to community home care providers will definitely drive some out of business. With decreased numbers of providers, client choice is significantly compromised.

The current situation simply breeds uncertainty and insecurity, and has resulted in the sector being less attractive to potential carers. The recruitment to and retention of persons in the home care profession is undoubtedly the single biggest challenge for all providers and unless there is a serious intervention, we are heading for a major tsunami.

NCCN members have a long history in community home care, some with up to 50 years of experience in the sector. These providers are community based, and have a proven track record of caring for the more vulnerable in our society. Like any business we need funding to function, but the primary focus of the NCCN is on client care not profitability. NCCN members are determined to remain at the forefront of home care delivery in Ireland and have fully engaged with the Health Service Executive when invited to do so. The NCCN is not against change, but feels strongly that we should be afforded the opportunity to be part of the process. Although client care is our primary objective, NCCN members are in business. Unlike the private or State providers, our members are subject to even more governance and compliance issues by the Charities Regulatory Authority, CRA, in addition to the Companies Registration Office, CRO, Revenue, and the various service level agreements with funders.

The NCCN has from the outset strongly advocated for regulation and common standards across all home care providers, both private and statutory. We want all home care providers to be accredited in the interests of health and safety of both clients and staff. We advocate for a social clause in all e-tendering procedures. Our contention is that early intervention is critical and residential care is not inevitable. Our primary objective is to work towards keeping older persons at home, but this is dependent on the availability of carers and care hours. Funding should predominantly be by the State but should not exclude the possibility of a client contribution. The continuity of care would involve working with primary care teams, including GPs and the public health nurses. More could be achieved by better integration with other services, such as day centres, meals on wheels and other community organisations like active retired, Age Friendly, Age Action, etc.

The NCCN is committed to research and the promotion of technologies that would facilitate home care delivery, client monitoring and safety, but current demands of compliance with all those bodies referenced, the CRO, CRA and Revenue, need to be streamlined because the burden of compliance is significant. In isolation, funding increases will do little to attract more persons into the home care sector. If a carer works the shortest call, which is normally 30 minutes, he or she forfeits any entitlement to a social welfare payment for the remainder of that day. Under such circumstances, there is no incentive to work in that sector.

The NCCN has lobbied for a change to Department of Employment Affairs and Social Protection payments based on hours per day to hours per week. This would require a co-operation across two Departments, namely Employment Affairs and Social Protection and Health. To date there has not been any obvious political will to effect such a change. Although there is a need for increased funding to the sector, the recruitment and retention of carers is currently the single biggest challenge to the service. The committee has a unique opportunity to positively influence the future of home care in the interests of our older persons and an ageing population. I hope that the committee does so.

Louise O'Reilly (Dublin Fingal, Sinn Fein)
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I have a number of short questions. Unfortunately, I will have to leave for a couple of minutes so Deputy Durkan will take the Chair. I will ask my questions and will have an opportunity to read back on the answers in the Official Report.

Mr. Moran talked about the need to maintain standards and how important they are, and I do not think anyone would disagree with that. Can Mr. Moran comment on whether he believes those standards are being maintained effectively at the moment? What could be done, even in the short term, to improve things? We all talk about our ageing population, which is marvellous. We would all like to grow old in safety and comfort and know that somebody is monitoring those standards. While we appreciate the evidence from the HSE and the Department of Health about what might happen in future, perhaps Mr. Moran could indicate what could happen in the very short term to ensure those standards are maintained.

Mr. O'Shea referred to something very interesting, which Mr. Moran might talk about as well, which is what older people want. We are discussing what they might want in terms of regulation. Is there a forum other than through representative groups for older persons to feed directly into the system? If we become more corporatised and move further away from the community base, will the opportunity for older persons to feed into that process be lost?

I want to ask the representatives from the NCCN about the difficulty in sourcing home help hours between 5 p.m. and 7 p.m., which the representatives from the Department of Health referred to earlier. They said it is sometimes necessary to go to the private sector to source those hours. I have said already I have some experience of that. My experience of dealing with home helps is of them telling me they cannot get enough hours and that they are available to do the work. Will the witnesses comment on the capacity issue and the ability for a client to top up hours, which was mentioned in the opening remarks of the representatives of the NCCN? Will they elaborate on exactly what that is? It is my understanding that when a person has been allocated a certain number of hours, which are paid for by the HSE, the person or his or her family may be able to top those hours up. If the witnesses excuse me, I have to go but I will be back. I will be able to listen back to their responses.

Bernard Durkan (Kildare North, Fine Gael)
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The next speakers are Senator Kelleher, Senator Conway-Walsh and Senator Mullen, in that order.

Colette Kelleher (Independent)
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I thank all those who presented. My first question is to Professor Eamon O'Shea. He commented clearly that rights and regulations without adequate resources are meaningless and will not create certainty and personalised care. When we ask older people and people with dementia or other care needs what they want, they say they do not want a one-size-fits all solution. They want the kind of care that fits their circumstances and in the case of dementia, that changes. When one gets a diagnosis of dementia, one can be very fit and well. One might need a little bit of help or a reminder to eat, for example, but it can progress. That kind of personalised care needs to change with the person's needs.

I want to hone in on the social insurance model. Given that the Department of Health is now working up its scheme, what advice would Professor O'Shea give us to advise the Department of Health on the resourcing of home care?

Mr. Moran said there is political will for the development of home care but there is still massive unmet need. We heard from the Department of Health earlier that it thinks it might be two to three years before a regulatory regime can be introduced. My husband works for HIQA - not as an inspector - which may be in the frame so I should probably raise that. What would Mr. Moran ask the committee to say to the Department of Health given there is political will and huge unmet need? There is also a sense of urgency so that the two-year to three-year timeframe seems far out.

What would Mr. Hensey ask the committee to deliver to the Department of Health in terms of its ongoing deliberations on home care? What should the top priority be?

Bernard Durkan (Kildare North, Fine Gael)
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We will bank the questions and the witnesses can answer them later.

Rose Conway Walsh (Sinn Fein)
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I come from rural Mayo. Home help and provision of care for the elderly is a huge problem right across the country but it is a particular problem in rural Ireland. I accept that home help is not the only care that needs to be provided. Between 2009 and 2010, in one year alone, 32,000 hours of home help were cut in County Mayo. There was not a problem in the provision of home care at that time but the decision was made for it to be cut. We were told it would not have any impact on the services provided. Elderly people are being medically assessed as needing home care and it is not being provided. The people on the ground do not have the resources to provide it and it is a huge problem. There has been an increase in the budget but despite that extra allocation in the budget, it is still not working. People are being assessed but are not getting the care required.

The hope that funding would trickle down has been mentioned. We can talk about this endlessly but we have to remember that older people who need this care, in some cases people who are 99 years of age, are not getting the care they need. It is a shame on all of us that it is not happening. There are people in their 80s and 90s trying to care for other people in their 80s and 90s and they are not able to do it. The impact it is having on their physical and mental health as carers is astounding and is completely wrong.

The other problem is in the provision of care and the availability of carers. There are some parishes that have no care available. One of the solutions to that is to revert back to the provision of one hour of care. The result is we have been telling elderly people they are not even worth one hour of home care, which is wrong. Can the witnesses see that happening? Can we force the Government to reverse the situation so that people get one hour? Forget about the 30 minutes or 45 minutes nonsense of people running across rural parishes trying to provide care - we cannot expect people to do that and to sit into their cars and drive for 30 minutes.

The witness was right when he spoke about connecting people. How can a person providing care to people in their own homes connect with people when the basic essentials have to be done in 30 minutes? It is not possible for any human being to do that. It concerns me that while we have all the right words for providing care for people in their own homes and it is our policy, we do not have the funding. It should not be a case of the funding trickling down; it should be there and not somewhere else waiting for a hand down. It should be there within communities to provide home care once the medical assessment is made that it is needed. I do not want to wait another number of years for that to happen. It is a decision that could and should be made immediately. When the assessment is done, the home care should be provided. I empathise with the people in home help offices who are trying to provide this care.

They are listening to families and must hear their stories every day of the week. The impact on them as workers trying to provide this care is totally wrong. We need the funding for it, not just the fancy words. I accept that it can be provided in different ways, but it was a major policy mistake to privatise what was already working. I would never advise going backwards, but we must go back and look at the models that were in place before all these drastic cuts started. Where is the money going? If people are saying all this money is being provided, where is it going in the system? It is not going to the 99 year old who is desperately waiting for help to get out of bed in the morning and so forth. People in rural areas are hugely dependent on proper home care. This is happening alongside half of the beds being cut in the local community hospital, so people do not have the respite and supports that were available heretofore. There must be an absolute urgency on that.

However, I am asking the witness about the one hour. Can the witness see if this business of 30 minutes and 45 minutes can be abolished? What would it take to do away with that as a policy decision across the board?

Rónán Mullen (Independent)
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I welcome our guests and speakers. Perhaps they could give us some assistance on the figures for all of this with regard to the demographics and where they are going, if possible. We heard earlier that there are approximately 195,000 people giving care at an average of 38 hours per week. It is approximately 6.6 million hours of care. There is a larger number receiving care. In some cases, there will be a second person being given care by the same person and, of course, there are people living alone who are receiving home help services to a greater or lesser degree from outside. Within that figure of 195,000 carers there are informal carers and those receiving some class of care allowance. I said earlier that money is not the primary lens through which this issue should be viewed, but the witnesses have made it clear that there is no reality to our aspirations and vision unless the resources are in place. Is there an overall figure?

I realise it is a difficult thing to assess and that there might be different metrics. I asked the officials earlier if they had a figure but they were not in a position to give me one. That is fair enough, but the State ought to be in a position to estimate how much carers are saving the State through the work they do. Whether their work is completely informal and not remunerated or one takes into account the carer's allowance they receive, it is far less than it would cost the State to give that full-time care however one measures it, be it in the context of nursing home costs or factoring in an hour-by-hour cost of giving care. Can the witnesses help us by giving us a sense of how much carers are saving the State, to put it in those terms?

Linking that to what Professor O'Shea spoke about regarding the demographics, the rubber is going to hit the road in a much more intense way in the future than is the case at present. Where are we going in terms of the demographics by 2030, 2040 and 2050 relative to where we are now? The witnesses are recommending a social insurance system for the funding of all that. Could they outline what they see as the benefits of that? Is it to do with the ring-fencing, that if there is a social insurance system the money paid by taxpayers in that way is therefore ring-fenced for spending on care, be it home care or residential? Are the witnesses thinking of it specifically for community-based care? I presume that is the case.

I realise there is a great deal covered by those questions. I agree on the need for personalised and responsive services. I and my family are very involved in a care giving situation and one hears about other people's experiences. My mother told me recently about a conversation she had with another carer who was informed by the person coming in, with the best will in the world, that they do not do this, that or the other. Eventually the lady asked in frustration, "Well, what do you do?" Everybody's needs are different, so I empathise with that comment because it brought that thought back to me.

Colm Burke (Fine Gael)
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I thank the witnesses for the work they are doing and the support they have given through the years with regard to elderly care. I am approaching this from the perspective of trying to fast-track the changes we need. As I said earlier, I brought forward a legislative measure in 2012 in a Private Member's capacity and it is only now in place, five years later, so I was trying to tie down a timeframe for when we would see the change from the Department and the HSE with regard to the provision of home care. We are talking about two to three years. It is important that we try to give every assistance possible to the Department and the HSE to bring that timeline of two to three years forward.

With regard to home care, I wish to follow up on what Senator Conway-Walsh raised regarding rural areas where there are insufficient numbers of people available. It is a huge challenge and it will be an even greater challenge in the next ten years. There are a number of reasons for that, one of which is the increasing number of elderly people in rural areas. More people are coming into that category. On the other side, there is the economic upturn. Whereas previously people might have been available to provide home care, they are now not available to provide it. There are two challenges in that regard. One of my concerns is whether we have an adequate number of people going through the training process at present to be available to provide home care and how we can incentivise that.

If we get more people to provide home care, there will be a huge saving for the State in real terms. The expenditure on somebody in a nursing home is approximately €50,000 per annum or approximately €1,000 per week, whether it comes from the patient or the State. Home care, therefore, is not even one third of that if it can be provided adequately whereby people can stay in their own home. We must incentivise the provision of home care and incentivise the people who could be encouraged to come into it. Has that issue been considered? For example, should we consider a scheme whereby for somebody who is providing home care the first €15,000 of their income, if it comes from the provision of home care, would be exempt from tax. Has something like that been considered, particularly in view of the challenges we are facing now? With the economic upturn, it will become increasingly difficult to get people to take on this role.

I have seen this working successfully. For example, I know somebody who is in their mid-90s and is confined to a wheelchair. The person is living alone and as a result of the home care being provided, which is through a combination of her family and the HSE, she is living independently and has a far better way of life than if she was in a nursing home. That is not to criticise nursing homes. They provide a very good level of care as well. However, that lady is far happier and I am sure there are many others in a similar situation.

The other issue I wish to raise is older people who are afraid to allow anybody to get in involved in providing care for them, even though they need the care. I have encountered a number of such instances recently involving people in their 90s who have a mistrust. In fairness, the community nurse, the community garda and everyone is involved, but we have still failed to get them to accept that home care is the way forward for them.

How would one deal with a situation like that and make progress on such an issue? I thank Mr. Moran for the work he is doing in this area.

Bernard Durkan (Kildare North, Fine Gael)
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I have a couple of comments rather than questions. I used to be involved in the health board in the old days and we used to visit all the nursing homes or, as they were called then, segregated hospitals. One point that comes to my attention all the time is the need for a standardised system that is interdependent and backed up with home help, home care, respite care and access to nursing homes, as required. This lightens the load on the household and carer and recognises that many carers are caring over their lifetime. Very often, a mother caring for a child with special needs has heavy responsibilities, including nursing responsibilities, and this can be the case into old age. This creates obvious serious physical problems for the carer.

Community-based social interaction is important. The person who receives care in the home or elsewhere should be able to meet others and have a chat. It is a little more difficult in rural areas but it can be done. The number of community centres might not be as high. A trip to the pub or elsewhere, for a special outing or otherwise, contributes to the quality of life that the older person should expect.

Mr. O'Shea stated the patient knows best in any event. Nobody feels the burden like the patient, for two reasons. First, the patient feels he is a burden, which creates a further problem in itself. Second, the patient knows how he feels and what needs to be done to address his issues. If the patient gets the impression that nobody understands his position or cares, it presents a huge burden in itself, and it creates a huge problem for people in the older age group. I am mindful of the fact that I am approaching the age group in question, with a certain amount of caution.

The transport element is important. There are a number of rural transport groups up and running throughout the country. The Irish Wheelchair Association has quite extensive services in some areas, but not throughout the country to the extent needed. Services exist, however, and clearly demonstrate the quality of service that can be provided when there are dedicated individuals to offer it. All the services that are needed, to a greater extent among older people, ought to be provided in the same way, as is required, and as they would be offered in an institutional environment. If they do not receive the services, it will create further problems.

I was involved in the provision of services previously in the old nursing homes, old hospitals, district hospitals, etc. This was before there was any direct provision for the private nursing homes. There was a considerable controversy over the old age pension. It was ceded to the hospital or nursing home, generating much criticism. When that stopped, the whole system became very much more expensive. I have thought about it in the meantime. At least the old system, which may be archaic by our standards today, provided residential care of a very good standard at a time when there were very few other services available for older people.

Some 85% of citizens are older people. This is interesting but it is no harm to remember that there is a growing cohort of younger people. Immigrants have generally been younger people. There is a significant cohort of younger people who will be taxpayers into the future. The imbalance that exists will not be as great as in some other European countries. We will be compensated in that way.

Colette Kelleher (Independent)
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I am really sorry but I must leave as I have another group coming. I will tune in to hear the responses.

Bernard Durkan (Kildare North, Fine Gael)
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The Chairman will be back in a little while.

Mr. Justin Moran:

I will take the questions in the order in which they were asked. When the Chairman asked how we maintain standards, the first word that came to my mind, and which was raised by Senator Burke, was "training". This is an area in which the Migrant Rights Centre of Ireland has done some work with home care workers, highlighting some of the challenges they face. Some challenges concern employment issues and zero-hour contracts. Senator Conway-Walsh referred to the issue of people hurtling across the country to try to deliver even 15 minutes of home care and then hurtling away somewhere else. What could be done? We could try to support training for home care workers, particularly as an increasing number of people with increasingly complex needs will be at home. We have come across care workers being put in a position where they are being asked to do things they do not believe they are fully trained or able for. I do not have figures for the Irish context in this regard. In our research, we came across an NHS briefing paper that highlighted that 60% of the NHS training budget went towards what could be described as the most highly skilled professionals, including doctors and nurses. Not nearly as much money went to the care workers, the health care assistants and people providing hands-on care.

With regard to maintaining and improving standards right now, the issue of training is critical. This relates to the point Senator Conway-Walsh raised on the limited amount of time available. If one has 15 or 30 minutes in which to get somebody up in the morning, there is no chance of building a relationship with that person. It can also be quite harassing for the older person. One has to get that person into the shower and usher them along the whole time. This can be quite pressurised. We need to do more to support workers and improve the process for the recruitment and retention of care workers to ensure caring is seen as a valid career path with training and professional development. If we can achieve this, and if the care workers have the time to deliver the service, we will see standards increase, as referred to by the Chairman. As I stated, the Migrant Rights Centre of Ireland has done work on this. I highly recommend it to the committee.

Regarding Senator Kelleher's point on political will and the period of two to three years, obviously we would prefer to see progress made sooner but we would prefer the job to be done right more than anything else. If it takes two to three years to develop a statutory scheme for home care that is effective and deals with the issues highlighted by the other members of the committee, that can be lived with, as long as it is not pushed on further. That is the medium to long-term solution. The crisis in home care is happening now. This was raised a couple of times by people talking about their experience of constituents coming to them and the question of how serious it is gaining access to home care.

When I talk about the political will expressed in comments of politicians and political parties suggesting they support home care, I always regard the October budget as the real representation of political will. Maybe this is a little cynical. The budget shows where money goes and does not go. Professor O'Shea, who was talking about budgeting earlier, was highlighting that, in general, based on taxation, which is how we are providing funding at present, we have seen community care cut back. To have greater representation of political will, as raised by Senator Kelleher, we would like to see more money invested in home care supports and home help hours. We would also like to have further clarity regarding where the money is going. Senator Conway-Walsh raised this. As I said in my presentation, there are very wide differences between community health organisations. The average member of the public could not tell one what a community health organisation is but, depending on which side of this CHO boundary one meets, one could get the care one needs. If one is on the other side, one does not get it at all. Although the money is going to the CHOs, it is a question of how it is being spent. It would be great to achieve clarity on that. If there is something the committee could focus on seriously while we are working on making progress on the statutory scheme, in addition to funding and transparency over funding, it is the expansion of reablement programmes. Three or four years ago in north Dublin, the HSE carried out a pilot study on reablement.

I could be wrong, but I believe that approximately 200 older people in acute hospitals were assessed as needing home help hours. Instead of getting home help hours, they went through a six-week reablement programme with very intensive supports, including occupational therapy and physiotherapy. It was like teaching the person how to live independently again. When the reablement programme had concluded, 80% of those older people were assessed as needing either no home help hours or fewer hours. The programme has also being rolled out in Glasgow and there is a very good case study, which we highlighted in our pre-budget submission on health. We have a successful HSE pilot programme in north Dublin. Could this be expanded and run on a national basis to see whether we can deliver reablement and, as a result of this, reduce demand for home help hours and free up resources?

I have addressed Senator Conway-Walsh's points on the issues of time and where the money is going, and the need for social interaction raised by the Acting Chairman. To go back to Senator Mullen's point, perhaps my colleagues have better information on the number of carers. The participation of organisations such as Family Carers Ireland and Care Alliance would be very important in the committee's deliberations and in the context of its work. They would be able to deliver a very informed perspective on it. Senator Mullen spoke about the experience of a carer coming in and stating that this is what he or she does and this is what he or she does not do.

Funding is critical. We support lot of the arguments made by Professor O'Shea, but what are we paying for? Earlier, a departmental official said people are willing to make contributions but for what are they making contributions? What do we mean by a statutory home care scheme? What does it actually mean? Is it home help hours or home care? What is the role of assistive technology? Will it deal with personal care or household tasks? We definitely need to deal with the issue of funding because if we do not, we will end up with a statutory scheme that delivers nothing.

We also need to develop a very clear idea that when we use the phrase "home care" everybody in this room and everybody applying for it has a very clear idea of what it actually means. For example, a standard home care basket, whatever that might be, might be free, but contributions might be paid for personal care services. This was being discussed as one of the Health Research Board's comparisons. I am a 39 year old man. If, in three years' time, I am told I must start paying a social insurance contribution towards long-term care, I would not have a problem with it. However, I would really like to know what I will get when I reach the age when I will be looking for that long-term care. Something that has always struck me is when consultation for the statutory home care scheme was announced and launched by the Department, all of the coverage in the newspapers the next day was about payments, how it will be paid for, whether it would be means tested and whether there would be co-payments or contributions. These are critical parts of the discussion, but we also need to know what we will pay for as well is how we will pay for it.

Professor Eamon O'Shea:

There are lots of questions and I will try to weave in answers to them rather than-----

Bernard Durkan (Kildare North, Fine Gael)
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Professor O'Shea should give it his best shot.

Professor Eamon O'Shea:

There are several really good elements and it is important to say what they are. A strong sense of intergenerational solidarity exists in the country. We are not starting from a base where we do not have willingness or a commitment of support. Whether this is through care, through families caring, through contributions or through our social insurance system, there is a strong element of solidarity. In recent years, we have had really good examples of where personalised care is working. There have been a number of innovations, particularly for people with dementia, throughout the country. There are programmes in Mayo, south Tipperary, south Dublin and Kinsale in Cork. There are many interesting projects. We are not starting from a zero base with regard to personalised care. We know older people and their families like this. There are good models in terms of what we want to do.

I will give an example of the demographic changes that will happen. At present, 55,000 people have dementia and they require various levels of care on a continuum. We know this will increase to approximately 100,000 by 2026 and up to 150,000 over the next 15 years. We know it will double and treble in the foreseeable future. This is not decades away. This is a good example of how numbers should concentrate minds.

It is difficult to know for sure how many carers we have looking after older people and the number of hours they do. From the limited surveys we have done, we estimate there are approximately 60,000 carers of people with dementia, ranging from cognitive impairment to advanced dementia. Many of these carers provide hours of care in terms of work we would shy away from in the formal paid labour market. Very often it is alone and debilitating, and very often shocks happen in the system of care to which there is not an immediate response and people are left even more vulnerable. These numbers have meaning. They are not just numbers or estimates, they have real meaning. What does this mean for a personalised, person-centred base in terms of the provision of supports and where do older people fit in? Whether they are physically or cognitively dependent, the voices of older people must be central. We cannot run a system where it is supply-side driven and provider-driven with an "I know best" approach. We will not get the connectivity or the social model of production where people are integrated and visible and we have an equitable provision throughout the country.

A question was asked as to how we get this voice. There are good things happening in this regard. We have the Irish dementia working group, associated with the Alzheimer's Society of Ireland, and we hear directly from people with dementia. We need to hear the direct voice in various fora and the policymakers need to hear it. We need champions, and that refers to this building and this group. We need champions, and not just the advocacy groups who are champions in their own right. We need political champions. If we look at countries where there has been political championing of older people's issues there has been an impact in the policy-making process. Over the coming years, it would be very helpful if there was direct championing of these issues in the political process.

Bernard Durkan (Kildare North, Fine Gael)
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I do not mean to push Professor O'Shea, but we must be somewhere else very shortly. I would like to get to everybody as quickly as possible.

Professor Eamon O'Shea:

I will finish on person-centred care. This goes back to the question of home help hours and half hours. Basic humanity is the essence of person-centred care. It cannot be done in half an hour or an hour. It has to be consistent and reliable. It has to be based on knowledge of the person. These are essentials of a home care system. When people speak about a home care system in terms of just hours, they should not miss the fundamental relationships that are critical to the care process. These underpin the care process.

On the issue of charging and cost sharing, we need to be careful about having cost sharing for community-based care. If we believe home care is the optimal approach, the introduction of cost sharing may incentivise the very opposite of what we want to happen. I ask the committee to be careful when it thinks about cost-sharing. It can have unintended consequences. I favour universality and a bias towards community-based care.

I understand why cost sharing is necessary, but the committee must be careful not to direct the system in an unwanted direction.

Ms Maria Jackson:

To respond to Deputy Louise O'Reilly's point about the difficulty in sourcing home help hours between 5 p.m. and 7 p.m, we mainly represent home help and not-for-profit providers nationwide. All providers provide care 24 hours a day, 365 days a year. In that regard, most of our organisations are reliant on core funding from the HSE, which historically was for the provision of care in the morning Monday to Friday and typically for early intervention care through what were originally domestic type duties. During the years that has changed to personal care which everybody in receipt of care from our organisations now receives. However, we very strongly advocate that the committee consider early intervention care and its effectiveness in keeping people at home, thus reducing the number of hospital admissions.

Deputy Louise O'Reilly also asked about clients having the ability to top up the care they received that was provided and paid for by the HSE. Unfortunately, our organisations are currently unable to provide private top-up paid care. This is affecting the continuity of care clients receive from our organisations because other groups are brought in to provide paid care.

Mr. Fiacre Hensey:

We should not flog ourselves to death in respect of standards, regulations and so on. One good measure which has come from the past couple of tenders is the stipulation that carers should have formal qualifications. That began in the 2014 tender process, whereby one was obliged to have completed two FETAC level 5 modules. That increased to eight modules but was then reduced in the 2016 tender process. There is an inconsistency, but things have been done. Many of our members or carers have completed eight care modules, which is a significant qualification. Like the other delegates, we would welcome regulation, but we should not flog ourselves to death for not doing anything because we have done quite a lot. I reluctantly accept that it takes two or three years to come up with a regulation, policy or whatever else, but there are issues that can be progressed in spite of formal regulations not being in place. That will need will and co-operation. We are endeavouring to co-operate with the HSE in various fora to advance things, in spite of regulations not being in place.

There has been a crossover in the questions asked. I reiterate that the availability of carers is the biggest problem across the country in the delivery of home care services. We do not like to call ourselves a voluntary organisation because people then think we do everything for free. Recruitment is crucial for not-for-profit organisations, private companies or more acute business models and the State which is a provider of care through the HSE, but it is currently very difficult for it to take place. I have given the committee the solution and would like to think it has the power to approach the Departments of Employment Affairs and Social Protection and Health in that regard. If we do not move on this issue, it will not matter how much money we put into it. We need to make it an area in which people can work.

On the nature of care, as Mr. Moran and others have mentioned, the limited time period of 30 minutes was rolled out as a cost-saving ploy. Perhaps it might work for medical prompts or something similar, but in general it is not enough time. One hour was the standard amount of time spent with a client and some of us have followed that practice for nearly 50 years. I fully agree with Senator Rose Conway-Walsh that it should remain. It is very important that there be co-operation between the two Departments which as a non-political grouping we have tried to encourage. The committee probably has far more strength than we do to push it forward and it is the biggest thing for which I ask.

A significant change in the home care sector is the running down of the home help budget. There has been a drop of up to 25% in the home help budget as opposed to home care packages. As Ms Jackson said, as a result, one no longer has one to three hours for early intervention care but is forced into the complex 15 or 20 hours arrangement. That does not make any sense because we know that early intervention results in people staying at home for longer for 25% of those in receipt of care if one tracks them back to when the intervention happened. We need to focus on early intervention and not push it aside in favour of more complex arrangements. Things have got a little mixed up. Complex cases should be kept at home with better trained staff and not have to be dealt with in a hospital. If a person reaches a certain stage of deterioration or debilitation, he or she will have to go into hospital, but that process should be delayed, if not avoided. That can be done.

Historically assessments were holistic and took into account which neighbours and family members could provide support. One could then allocated the minimum number of hours because it would be complemented by the efforts of those around the client, but that has largely stopped and now a more formal structure is wanted. I am all for that and it could be done using the common summary assessment report, CSAR, or another assessment tool. In many places we had that holistic assessment. If one's assessment indicated that one needed three or five hours of support, it was very hard to provide that amount of care. We are inundated with requests to get people onto the ladder of care. At the same time, however, we must prioritise complex cases, which is a contradiction.

I take on board what has been said by Professor O'Shea about clients paying for extra hours of care. Historically, there was a means test and people who were able to pay, did so. If there is no money available, clients topping up their number of care hours might be one of the only ways for them to receive sufficient care. The majority of our members do not generally look for that business.

We need regulations and standards because of the inconsistencies nationwide. I reiterate that all of our members would welcome a system under which tenders would be scrapped and there would be some form of accreditation. There would be a list of accredited providers and people who had passed the test which would be available to anybody across the country who wanted it. He or she could select an organisation knowing that it ticked the boxes in terms of compliance and standards. It could be worked out without formal legislation.

The idea of a holistic, person-centred care approach has been done. It is now being piloted as a new idea in community health organisation three, CHO3, in the mid-west. In that approach the client has full say on how the hours are allocated. That is happening. That has been running since about September. If there is a family carer in a household his or her request might be to have a break because if he or she burns out one is in serious trouble. The home help or carer going in would release the person to go and take a walk, go down town, get out, get their hair done or whatever. That is as important in the continuity of care as it is to go in and prompt medicines, etc. I thank the committee very much.

Michael Harty (Clare, Independent)
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Thank you very much. Are there any further questions?

Colm Burke (Fine Gael)
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I refer to the challenge of getting carers, about whether we can do something about incentivising that. Has that issue been approached in any way? It is going to be a major challenge particularly in rural areas because with the economic upturn there are a lot more jobs. Has that issue about incentivising been touched?

Mr. Fiacre Hensey:

The biggest thing, given the nature of care and the nature of people who get into that profession, is they are willing to work the peak hours when there is peak demand for the mornings and the evenings. In between is a kind of lean period. However, if they work that one hour in the morning, that might be their only source of income for the day. Why work further then if they sacrifice any right to a social welfare payment?

That is why I am pushing the idea that it be worked out on the basis of working X number of hours for a working week. Then carers, whether they work five hours in one day or five hours across five days, would still be entitled to the balance as a social welfare payment. Most of those we would interact with do not want a social welfare payment. However, they do want security of income and they do not have it. I have had people coming up to me and saying, "I cannot get a credit union loan because I do not know how much I will be earning next month." There has to be a way that fuses the two together. I imagine that it would be cost neutral if not a saving to the Government to complement the income derived from delivering a care hour with the balance they would get for that day from social welfare. I really believe that is the biggest thing that would make a huge contribution.

Michael Harty (Clare, Independent)
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Of course it would also be possible to include some compensation for the variation in hours into the funding mechanism as well. That would be another way to look at it. If a person was opposed to the social welfare system, it could be looked at from another angle and tailor the contracts of employment and also the funding to exactly match with that. However, the nature of the work does not lend itself very well to that because of the variability of the hours. It does not lend itself very well to forward planning.

If that is all of our questions, I will conclude. On behalf of the committee I thank Mr. Justin Moran, Mr. Eamon O'Shea, Ms Maria Jackson and Mr. Fiacre Hensey for attending and for sharing with us their valuable insights.