Jerry Buttimer (Cork South Central, Fine Gael)
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I apologise to the witnesses for the delay in beginning the meeting. There were a number of items of private business to attend to.
I welcome everybody to the meeting which is focused on the pre-budget submissions of nine groups and which is divided into two parts. I remind members, witnesses and those in the Visitors Gallery that mobile phones should be switched off in order that there is no interference in the work of the broadcast unit.
Today's meeting is an opportunity for us to listen to and discuss the pre-budget submissions from various community and voluntary groups working in the health and children sector. We took a decision as a committee that as we are always heading to meetings on pre-budget submissions and budget 2013 is of great importance, we would listen to what the groups have to say in the context of putting the country's public finances back on a sustainable footing. It is in all our interests that the public finances are stabilised and the economy returns to growth. It is also an opportunity for us as parliamentarians to meet the groups, commend them on their work and thank them for the tremendous service they provide. In education and advocacy, the groups play a significant role in society, and that is to be acknowledged. The process of this pre-budget engagement will elevate their status outside the House when they can be here in the parliamentary committee making a formal presentation.
I am conscious there are nine groups. Members are used to a time limit of five minutes and I ask the groups to confine themselves to five minutes. We have received their pre-budget submissions. I ask them to make their remarks in five minutes to allow for discussion and interaction.
I draw attention 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 this committee. However, if they are directed by the committee to cease giving evidence in respect of 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 nor make charges against any person, persons or entity by name or in such as way as to make him, her or it identifiable. 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 by name or in such a way as to make him or her identifiable.
I welcome Mr. Chris Macey, head of advocacy at the Irish Heart Foundation, and Mr. John McCormack of the Irish Cancer Society. Mr. Macey has five minutes.

Mr. Chris Macey:

The tobacco industry is being allowed make extraordinary profits in Ireland, substantially more than in other European countries, even though it creates no jobs and costs the health service far more than the State receives in tobacco tax. Traditionally, we focused on taxing smokers and today we are also asking for the committee to support our recommendation for excessive tobacco industry profits, some of which are being used to manipulate national health policy, to be transferred to the Exchequer. Part of this revenue should be used to help smokers quit smoking.

In Ireland, the Government has been taking approximately 79% of the price of a packet of cigarettes in tax. The rest goes to the tobacco industry. In the UK, the rate has been 90%, leaving the industry there with a much smaller profit margin. In monetary terms, the tobacco industry has been earning approximately €1 per pack more in Ireland than in the UK. We estimate that by increasing the rate to 90%, the State could secure €150 million a year more, not from smokers' pockets but from industry profits, making them pay more for the damage done by smoking.

Every year, the tobacco industry increases the price of cigarettes, regardless of whether the tax increases. This means its profit margin gets bigger and it is virtually unnoticed by the smokers, who think all of the increases are caused by tax hikes. Between 2000 and 2010, for example, tobacco companies increased their prices by 83% compared with tax increases of 78%.

The industry uses a sizeable proportion of its extra profit to pay lobbyists and public relations firms which come to places like Leinster House to claim that higher tax increases smuggling. The industry follows this up by increasing its prices. If the tobacco industry genuinely thought or cared that tax increases fuelled smuggling, why would it have increased the price of cigarettes every year for the past ten years? The truth is this is a duplicitous industry that cares only about profit and then uses these profits to undermine State tobacco control policy and regulations.

In our pre-budget submission, we recommend that Government appoints a regulator who would determine a profit level for the tobacco industry that is more in line with other consumer products and with the levels of other countries. This simple initiative, which has worked effectively for other industries, would mean the tobacco manufacturers would have less money to invest in marketing, PR and lobbying aimed at disrupting the State's efforts to reduce the smoking rate.

Smoking is one of the greatest public health challenges of our time. We must do what we can in order that the tobacco industry does not profit from tobacco sales while the State and the individual are left to pick up the bill in financial and human terms. Last year the State took in €1.36 billion in tobacco tax, but the Department of Health states that at current smoking rates, tobacco related illness will cost the State €23 billion in the next ten years. This means the taxpayer is subsidising the tobacco industry, which does not create any jobs or make any meaningful contribution to society, to the tune of €1 billion a year.

Traditional methods of tackling the power of the tobacco industry are not working and we need a new approach. We know that tobacco companies do not care about their products that kill and maim people. By reducing their profits, we can hit them where it will hurt them most and also increase Government revenue at this time of greatest need.

Mr. McCormack from the Irish Cancer Society will finish our submission.

Mr. John McCormack:

The pre-budget submission on which we are working with the Irish Heart Foundation does not stop at this ground-breaking recommendation. We also need to focus on the basics. For example, we do not have a national tobacco strategy, that is, a strategy that incorporates high regular taxation, reduced tobacco industry profits, tough anti-smuggling measures and concerted smoking cessation measures which will greatly reduce the human and economic impact of smoking.

Other countries have shown that one can impose big tax increases on cigarettes and reduce smuggling at the same time where the will and leadership exists.

In the UK, for example, through regular tax increases above the rate of inflation over the last ten years, major brand cigarettes are now more expensive than in Ireland. Packs cost more than €9.30 in the UK at current exchange rates, compared to €9.20 here. During the same period the smuggling rate in the UK has fallen from 21% to 9%, which is less than half the rate in Ireland. The next time that tobacco industry supported groups like retailers against smuggling tell members that increases in taxes hit their funders in the pocket, please remember whose interests they are protecting. We urge the Government to commit to an annual price escalator for tobacco taxes on all tobacco products, including hand-rolled tobacco, of at least 5% above the rate of inflation. This has been proven globally to be the most effective way of reducing smoking rates, especially among teenagers, but it will only be effective if we tackle the illicit market which provides easy access to cheap tobacco and thereby negates the effect of higher prices.

Our template for action is provided by the UK, which had roughly the same smoking and smuggling rates a decade ago as we have now. By combining high regular tax increases, tough anti-smuggling measures and effective stop-smoking strategies, the number of smokers has decreased by 2 million, including a 50% reduction among children, while the illicit market has shrunk from 21% to 9%. For an annual outlay of £300 million, tax revenues have risen by £1.2 billion, while health service savings total £1.7 billion. A crude estimate of what this could achieve in Ireland based on the UK experience suggests that an outlay of €8 million a year would return additional revenue of €130 million to the Exchequer each year.

High smuggling rates must be tackled to cut off the supply of cheap tobacco which is increasing the number of young smokers. We must give Revenue, which has lost hundreds of staff in recent years, and the similarly hard pressed Garda, the manpower and equipment they require, along with tough justice in the courts to deal with smuggling. We must also give greater support to smokers to free them from the grip of addiction. If such co-ordinated action is taken we can effectively tackle the health catastrophe that costs this country one of its citizens roughly every 90 minutes and massively increase tax revenues and cost savings for Ireland’s cash starved health service. We need new thinking about tobacco in Ireland and with this in mind, we ask members to endorse our pre-budget submission.

Jerry Buttimer (Cork South Central, Fine Gael)
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I welcome Mr. Sean Dillon, the public affairs manager for Older and Bolder, and invite him to make his presentation.

Mr. Sean Dillon:

I thank the committee for providing us with an opportunity to address it. Older and Bolder is a national alliance of organisations that champions the rights of older people in Ireland. Our member organisations are Active Retirement Ireland, Age and Opportunity, the Alzheimer Society, the Carers Association, the Irish Hospice Foundation, the Irish Senior Citizens Parliament and Senior Help Line. Each of the alliance members has its own unique goals and work programme and Older and Bolder's role is to enable our members to speak with a collective and united voice on issues of policy and practice which are critical to the well being of older people.
The issue on which Older and Bolder is currently focused, together with people of all ages and from all parts of the country, is the right to age well at home and we have called our campaign "Make home work". The campaign highlights the obstacles faced by older people, people with chronic illnesses or disabilities and children with life limiting illnesses who want to live well at home but need support to do so. Our campaign also highlights the broader social determinants of health, such as income, transport and social participation, and shows how, together with access to home and community care services, these determinants support people in aging well at home. The focus of our pre-budget presentation this year was guided by our campaign and I intend to avail of this opportunity to make reference to the elements of our pre-budget submission that are relevant to this committee, particularly in respect of home care services.
A few months ago our campaign to make home care work became a campaign to rescue home care after the announcement by the HSE of €22.5 million in cuts to home care services. Some 18% of the cuts announced on 30 August were targeted at home care services and represented a direct attack on old, young and disabled people in their own homes. Not only are the cuts a regressive step in terms of safe and healthy aging, they make no sense from an administrative or care management perspective. We are already failing people who need home and community care services. In the Republic of Ireland in 2006, 14% of older people with limiting disabilities living in the community received no care, compared with 2% in Northern Ireland. That percentage has not changed much since then.
We are being asked to accept assurances that the HSE's priority to is minimise the impact on patients of spending cuts but where is the evidence to support these assurances? There is a complete lack of transparent information about how these cuts are actually being applied. In the case of the home help budget the HSE has predetermined that €8 million will be cut from home help services before the end of the year. To say that the assessment process is based on a review of individual needs is misleading at best. How is the HSE going to engage efficiently and humanely in the individualised assessment of 11 million home help hours resulting in a reduction of a million hours? The examples we hear from around the country of people's hours and services been cut are staggering. In one case a family received a letter from a local HSE office dated 3 September referring to the budget cuts and announcing a cut to the family's home care package. This letter issued just two working days after the cuts were announced. There could not have been time for a clinical assessment of needs.
The whole process has raised many unanswered questions. In the absence of home help hours and home care packages, what will happen to individuals who are medically fit for discharge from acute hospitals but need social care support to return home safely? In the wake of cuts to home care services, will the budget for the nursing home support scheme be increased to cater for increased and earlier admissions to nursing homes? If, as mooted, people currently in receipt of home care services are assured that a service will be maintained, what will happen to individuals and families currently awaiting assessment for access to home help and home care packages? How will an already stretched public health nurse network meet the needs of people in the community who have identified unmet needs and who are at risk?
The key underlying issue is the lack of a legislative framework for home and community care to govern individual entitlement, single assessment, quality of services, etc. This issue once again highlights the vulnerability of community care budgets to cuts in both bad times and good in the absence of legislative protection. Citizens in Ireland have no legal right to care in the home or community. People do not realise this or understand the implications of it until they are in a transitional or crisis situation. It is only when they are looking for care and support for themselves or a family member that they discover there is no right of access to care. The need to clarify the legal situation with regard to home care has been highlighted by various bodies over many years, including the Ombudsman. The HSE service plan for 2012 states that the HSE will continue to work with the Department of Health on legislative proposals for community services. Exactly the same commitment was set out in the 2011 service plan and I suspect we might find it in previous plans. The entire process is characterised by inertia and a failure to plan and act decisively.
Access to home and community care is currently ad hoc, discretionary and dependent on one's illness, where one lives and to whom one speaks. Older and Bolder believes it is time to put in place a commission on long-term care in Ireland so that the statistics, facts, projections for costs, population, dependency needs, etc., can be placed in the public domain and debated publicly. The issues I have outlined reinforce the need for a planned approach to aging, which is why Older and Bolder has campaigned vigorously over the last four years for a national positive aging strategy. The deadline of October 2012 has come and gone and we are now looking at year end before a draft reaches the Cabinet. There can be no further delays.
Cuts to home care services will devastate the prospect of safe aging at home. Cuts to these services have again highlighted the urgency to underpin the delivery of community care services in Ireland with legislative protection and we ask the committee to take the lead in advancing this matter. It is imperative that budget 2013 reflects the vital role home care services play in the delivery of health care in this country. The committee's letter of 9 October 2012 calling on the Minister for Health to reverse the cuts was welcomed by those of us who champion such a move and we ask members to continue to hold to account those who would cut these services.

Jerry Buttimer (Cork South Central, Fine Gael)
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I welcome Mr. John Dunne, the chief executive of the Carers Association, and invite him to make his presentation.

Mr. John Dunne:

I endorse all that Mr. Dillon has said on behalf of Older and Bolder. As he pointed out, the Carers Association is part of that consortium. I will focus on two additional issues in my remarks.

To the extent that cuts are required, there has been insufficient creativity in considering how compensatory adjustments can be made to existing budgetary frameworks and commitments. We have made a number of proposals in our submission. Resources are being systematically shifted from home help to home care, which appears to fit the strategy of providing resources where need is greatest. There must be scope to backfill some of the services lost on the home help side by using labour market activation measures.

By and large we do a certain amount of this already, and people who have gone through training in home care have very high progression rates into employment because it is a growing area, not only in terms of State services but also commercial services.

We are giving a guarded signal that we support the extension of the fair deal model into community care, which is an alternative to cuts. However, there are problems with the current fair deal model which must be got right, and once the model is extended to community care it must be significantly tweaked because fundamental differences exist between the two. The Government has already signalled it wants to extend free GP care to everybody, and in delivering the next step we suggest extending it to full-time carers. There is a clear strategy to get people out of hospitals faster. Is it possible for this strategy to incorporate as part of the discharge process a transfer of carer protocol which would include helping carers and training them so when they take ill people home they are able to look after them?

We believe absolutely that community-based services should be on a statutory basis. With all the focus on cuts we are very concerned not enough attention is being paid to how the money that is being spent is being poorly spent. I would nearly go so far as to say that in some cases it is being misspent. It is not only about arguing about the margins. The absence of a statutory basis for community care means it is now routine that somebody looking for between €50 and €100 a week to support a carer for a person in the home cannot get it because the money is not there but they can obtain €750 a week to put someone into care because there is a statutory basis for this. Every time this happens the State loses €600 a week. The officials, doctors and patients do not want this. The only reason it is happening is because of the legislative framework. It is not a budgetary issue, it is a legislative issue.

Under the Croke Park agreement it is becoming quite routine to redeploy unqualified untrained staff into roles they simply cannot carry out. In the early stages, this had to do to some extent with work practices. As an example, somebody can be put to bed at 3 p.m. because that person needs help to go to bed but the home help deployed to do the work will not come any later. Leaving this aside there is an issue with regard to whether those being sent into homes to provide care are trained in moving and handling patients and are able to handle tasks such as dialysis or taking blood sugar tests, which they are not and they do not even pretend they are. Patients need these services and they cannot get them. This happens below the radar. People think it is okay because there are 5,000 extra home care packages but if these packages are inadequately delivered by unqualified staff it is a waste of money and not something from which to take satisfaction.

The lack of flexibility in responding to the needs on the margins means the State system takes the easy option, particularly under the Croke Park agreement. Where care is needed the voluntary sector is being asked to provide it at night and weekends because the State system will not do it. People in the State system get paid higher salaries to do the easy work while the voluntary sector is kicked off to do the hard work.

These are some thoughts for the committee to reflect on. In the current budgetary climate there is a danger of looking at cutbacks all the time. A vast amount of money is still being spent and it is not being spent as well as it could. This is a very important budgetary issue.

Mr. John Dolan:

I thank the Chair and the committee. The Disability Federation of Ireland and its member organisations throughout the country are very appreciative of this opportunity. I want to explain how health policy is pivotal in determining what the future will be like for disabled people and those with mental health needs and people in general in Ireland. In the main, people with disabilities are living in communities when they become disabled and they try to stay living there. They are not immune from the attrition of the recession in families and communities. Committee members will know from their clinics that people with disabilities have been subject to particular cuts with regard to income and services. An issue arises of a double hit to already vulnerable people. In September this year and last year, the Disability Federation of Ireland and eight national organisations, including Mental Health Reform and the National Federation of Voluntary Bodies, came together to state we have gone past the point of sustainability of services as things stand. Since last year cuts have been eating into the level of services people require. We also have information on demographics and greater need.

These cuts and restrictions also undermine the social infrastructure which enables people with disabilities to live independently and stay out of hospitals and long-stay institutions. The events of late August and early September with regard to cuts to personal assistants and home help, and the issue raised in recent weeks with regard to the mobility allowance, have torn the confidence of people with disabilities and their families with regard to the stated intent of the Government to protect the vulnerable. People do not feel this is happening and they do not have confidence it is being brought through.

Cuts to personal assistants and home help puts more pressure on hospitals and long-care institutions. It needs to be understood that the best way to take pressure off hospitals is to have fewer people requiring them for shorter periods of time and to put the focus where it is needed. Voluntary disability organisations, families and carers are at breaking point. To put it very starkly, the patient will be dead before the austerity medicine works. This is our stark assessment of the situation. The cuts are coming too hard and too fast for people and organisations, whether the HSE or voluntary organisations, to be able to react.

For the past two years this country has had a plan with the troika with regard to income and expenditure. We have a jobs plan. Over a similar period of time, since the Government came to power, it has had a commitment to have a plan to protect the national disability strategy. This plan is not yet in place. The earliest it will be put in place is January or February next year. A budget will be announced in four weeks' time which will make it more difficult to have coherence around this issue. There is an imbalance in Government policy thinking. Much work is being done on the economic side, which is right, but there does not seem to be any similar coherence or multi-annual planning to have what I broadly call a social infrastructure for people, whether they are disabled, children or elderly.

Disability and mental health issues and chronic conditions of all types are a risk contingency faced by every person in the country. Not everybody is directly affected but those we know and love and those around us will at some stage be affected. Only the Government can underwrite this and try to put a floor under it.

A value for money report was published a number of months ago on disability services. It did not deal with a plethora of supports and services which are very much involved in the community and supporting people and their families. Disability policy and health are central to Irish success and well-being in the long term.

Members of the Oireachtas make the decisions. They must either weigh up the risks of making decisions that further reduce services to people with disabilities, mental health needs and so on while at the same time degrading the sustainability of Ireland's social infrastructure, or instead recognise that, through practice rather than rhetoric, action must be taken by Government. Further service reductions will be devastating to people and, equally, to Ireland's resilience and future performance.

The Chairman is from Cork. He knows that sustained rain followed by a high tide results in flooding.

Robert Dowds (Dublin Mid West, Labour)
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That does not only happen in Cork.

Mr. John Dolan:

Yes. The same happens everywhere when two things happen at the wrong time. Some 80% to 90% of costs, be it for the State or a voluntary organisation, cannot reduce in the short to medium term under the Croke Park Agreement. This, coupled with the €2 in savings achieved as a result of service reductions, €1 of which will go into the Exchequer pot, leads to a loss of services for people. This is the quandary. The community and disability sector wants to work with Government and everybody else to keep services in place. We need leadership and signposting from Government to do so effectively.

Jerry Buttimer (Cork South Central, Fine Gael)
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I remind members that we have a second meeting and, as such, I ask that they confine their contributions to questions rather than statements.

Robert Troy (Longford-Westmeath, Fianna Fail)
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On the Older and Bolder contribution, Mr. Dolan stated the Government claims there will be no cut in home help hours for those medically assessed. However, the evidence is that this is untrue. Perhaps Mr. Dolan would set out his evidence in this regard. Who is carrying out the medical assessments? Are they being undertaken by a person at a desk or by a caller to the person's home? What is the cost of the assessment? Is it counter-productive? For example, is the cost of carrying out these assessments greater than the amount which will be saved? Also, does this place a further administrative burden on the provision of home help? I have always said that I believe it is counter-productive to leave people with no choice but to go into long-term nursing home care because this places a greater financial burden on the Exchequer and the person concerned, who would probably prefer to remain in his or her home.

On the presentation by the Carers' Association, no reference was made in its opening statement to the length of time carers are waiting for their applications to be processed by the Department of Social Protection. This issue has been raised with me on a number of occasions. Carers are people who are working for their social welfare payment. Many of these people are waiting in excess of nine months to have their applications processed. In many instances, initial applications are being refused, leaving them to engage in a lengthy appeals process. Perhaps Mr. Dunne would indicate the experience of his organisation in this regard and would say if he has any statistics which would back up the claims I make.

Mr. Dunne set out areas where he believes money could be better spent, which is welcome. Perhaps he would enlighten us further in this regard.

Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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I join the Chairman in welcoming each of the contributors. I am of similar mind to the views expressed by Mr. Chris Macey of the Irish Heart Foundation and Mr. John McCormack of the Irish Cancer Society, whose respective contributions I welcome. In the limited time available to me, it will not be possible for me to direct questions to all five lead speakers.

I would like to highlight a couple of issues and to direct my first questions to Mr. John Dunne of the Carers Association and Mr. Sean Dillon of Older and Bolder. I received a reply yesterday to parliamentary questions on home help hours and home care packages. The figures with which I was provided in this regard are very worrying. The figure in respect of the number of people in receipt of home help hours and home care packages indicates a very worrying trend. A large number of those in receipt of these reports are receiving reduced supports, namely, shorter and-or fewer attendances by their home help hour providers. This indicates that from 31 December 2010 to the end of July 2012, there were 3,701 fewer people in receipt of home help hours. During the corresponding period, there was an increase of 1,159 in the number of home care packages. However, the net reduction in terms of recipients of home supports was in excess of 2,500. This does not reflect the real impact of cuts. We are deeply alarmed that in some instances home help time has been reduced to 15 minutes. It is important these facts and figures are spelled out. Everyone knows what is happening.

I am happy to report to Older and Bolder and the Carers Association that this committee unanimously adopted a proposal from me and wrote to the Minister asking that the proposed cuts not proceed. However, we now know that they have been applied since the last bank holiday weekend. This is an opportunity for all of us, Government and Opposition, to support the case that not only should there not be further cuts in terms of budget 2013 but that there should be a reversal of the cuts implemented, which are impacting furiously.

My final question is to Mr. John Dolan of the Disability Federation of Ireland. Mr. Dolan referred in his submission to an implementation plan in relation to the national disability strategy. There is no such plan yet in place, which is outrageous. This committee has a role to play in this area and should write to the Minister about this issue following today's meeting.

Jerry Buttimer (Cork South Central, Fine Gael)
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We will have an opportunity to discuss that with the Minister.

Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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I believe that decisions are being taken by HSE managers and the Minister without any consideration of impact. I am awaiting a reply to a parliamentary question to the Minister on this issue. I had hoped to have that response with me today. However, perhaps Mr. Dolan will say, authoritatively or from an informed and speculative basis, what would have been the impact, had it proceeded, of the €10 million cut to the provision of personal assistance to people with disabilities, which had been signalled as part of the package of €130 million in cuts? We need to know what would have been the impact of that €10 million in cuts and how this related proportionately to the overall provision on an annual basis of those supports for personal assistance for those who have that right and need.

Séamus Healy (Tipperary South, Workers and Unemployed Action Group)
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I will brief. I thank the organisations for their submissions. I endorse the submissions of the Irish Heart Foundation and Irish Cancer Society.

I agree with the idea of an annual price escalator. To some extent, the banning of smoking in public places a number of years ago led to us sitting on our laurels and we must focus on the presentations as a result.

I have a question for the other three organisations. I agree with the comments of previous speakers but the key question raised by all the organisations relates to quality of life for the people they represent. That quality of life relates to home and community-based services and the fact there is no statutory basis for the services. Will the representatives of the organisations deal with that? I agree that this committee can spearhead the provision of a statutory basis for these services but will the witnesses comment on that aspect? It is key to an acceptable quality of life for people.

Colm Burke (Fine Gael)
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I thank all the organisations for coming before us and giving a very comprehensive submission. I am concerned about the way the adjustments were made to home care packages in the past few months. One of the problems arising is that because people doing home help or care are not permanent and pensionable, it is an easy element to cut. I raise the idea of getting the Department to ring-fence the home help budget for 2013 so that in August 2013, if there is a budgetary problem with the HSE, we will not be going first to the element that is not permanent and pensionable or the home care packages. That should be done.

I met somebody the other day who was getting half a carer's allowance, which is €100 per week. The person's mother has Alzheimer's disease and it is a full-time job taking care of her. That person is saving €900 per week for the State because it would cost €1,000 per week for a place in a nursing home. We must be very proactive in ensuring we do not have a repetition of what has happened this year in 2013. The only way of doing this is by ring-fencing the budget within the HSE right across the country.

I support fully the comments of the witnesses and we must support people. We must grow the number of people we can keep at home for longer than in the past. We must ensure this can be done through future budget planning as well. I am not sure of the view of the witnesses on ring-fencing the budget.

Regina Doherty (Meath East, Fine Gael)
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I thank all the groups for attending this meeting. They all do wonderful work. I am not ignoring the gentlemen from the Irish Heart Foundation but I have three or four questions for the other witnesses. It is almost like "speed questioning" so I will not waste time. I have particular respect for the work done by Mr. Dillon's organisation. I believe we could have found the €8 million savings inflicted in September and, along with my committee colleagues, we are very disheartened by it. Moreover, we continue to investigate it. The cuts across the country are starting to become clear and people are beginning to complain in all our constituency offices. Some counties seem far more affected than others. Is there any feedback on what is happening around the country?

I have met with local people concerned with carer's allowance in the past number of weeks and there is a particular fear that the half carer's allowance will be cut in this budget. Will Mr. Dillon give an indication of why his organisation sees that coming? He argued earlier that we are misspending our current budget despite the fact it is shrinking. Will he outline how this is happening? Will he tell us who is the gentleman being put to bed at 3.30 p.m., as that is outrageous?

I met Mr. Dillon earlier this year and we spoke about the older persons strategy. The carer strategy was finally launched this year. We are waiting on the disability strategy. Is the same person in the HSE producing all these strategies? Is that why we are waiting on them in chronological order? I am joking and I hope it is not the same person doing them. If the same person is doing them, could the committee address the issue and seek other resources, seeing as there are thousands of people in the HSE who could examine the strategies?

The HSE is apparently to remove disability services aimed directly at servicing children's special schools. Is that true or is the matter being investigated?

Jerry Buttimer (Cork South Central, Fine Gael)
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The room must be vacated by 12.45 p.m. as there is a committee meeting at 1 p.m.

Mr. Sean Dillon:

I will be brief. I will answer in the order the questions were asked and if that is not sufficient, members should feel free to come back in. We have no confidence that implementation of the cuts is being done in a medically or clinically driven manner and the numbers do not allow that to happen. If 1 million hours are to be taken from 11 million hours in order to meet an €8 million budget reduction in home help over a couple of months, how else can this be done?

Jerry Buttimer (Cork South Central, Fine Gael)
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How was the decision arrived at? Is it a unilateral process?

Mr. Sean Dillon:

It is very hard to get precise information on how the HSE is implementing the process, although we have asked to know how it is happening. The evidence percolating from the ground is that the HSE is picking an arbitrary figure of a number of hours based on percentage needs, and a directive will go out that there must be a reduction of 2,000 hours in an area, for example. If the supply exceeds demand, there is no problem but we know demand for these services far exceeds any supply. As this is a budgetary matter, there must be a reduction. We have heard cases where an hour is reduced to 30 minutes or 30 minutes is reduced to 15 minutes. The 15-minute unit seems to be entering some equations.

There are approximately 10,000 people in receipt of a home care package and according to some parliamentary questions, approximately 40,000 or 50,000 people get home help service. The argument is that we will be able to review that in time to deliver these cuts; in reviewing the process we will be able to reduce the service sufficiently to save €8 million. The public health nurses are at the end of their wits because, quite unfairly, they must play God. They get a direction from a local HSE office that 100 hours must be cut, for example, and some person therefore has to lose the service. One of the easiest ways to accomplish this is by taking 15 minutes from everybody. The letter I mentioned is from a local HSE office within 50 miles of here and is dated 3 September. In most cases it is a desk-based cut.

With regard to the statutory basis for quality of life, we fully endorse the need to introduce legislation to protect community services. The fair deal nursing home scheme affects approximately 5% of older people, with approximately 530,000 people over 65 in the country. Approximately 30,000 of those people are in long-term residential homes. We have legislated for that through the fair deal scheme. I am not saying the remaining 95% need a carer service but in most cases the service needed would be a community or home-based service. If we believe in the continuum of care, ranging from a little home help to end-of-life care - our colleagues in the Irish Hospice Foundation can give more detail on that - there are different care needs along that continuum. We must ring-fence and protect the budget used in that respect.

There was a question as to why this is happening differently in certain areas, and this is down to discretion. Where there is discretion, the cut opted for is usually the easiest and quickest.

Therefore, the allocation of the service is discretionary and the cut is discretionary. That is why we need to ring-fence the funding.

Jerry Buttimer (Cork South Central, Fine Gael)
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Is Mr. Dillon suggesting that the HSE can use its discretion and not make cuts?

Mr. Sean Dillon:

Yes, for certain schemes. As Mr. John Dunne pointed out, the HSE has an obligation in terms of funding for the fair deal scheme. If one enters that system and qualifies then one will receive it. However, if one qualifies for a home care service one does not necessarily get it. The difference is that a person does not have to receive it.

It is the Department of Health that dictates the strategy and not the HSE. There is an office for older persons. I know that one person provided the carer's strategy which had a knock-on effect on the positive ageing strategy. It is my belief that there is a resources issue. The development of national policies should not depend on each other. There should be enough of a distribution and allocation of resources to implement them concurrently because both strategies feed into each other.

Mr. John Dunne:

With regard to Deputy Troy's point, I did not mention the delay in carer's allowance because I did not think it was relevant to the committee. I have no problem going on the record to say that delays are unacceptable. Unfortunately, the Minister has no problem going on the record either but delays continue. I shall not dwell on the matter because it does not come under the committee's remit.

The Deputy was polite. I have said that money is being wasted and have gone beyond saying that it could be better spent. I am concerned about the matter. If it needs colourful language to make people think about the matter then I shall repeat that money is being wasted.

Jerry Buttimer (Cork South Central, Fine Gael)
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Has the Department engaged with Mr. Dunne's organisation on the matter? He made the same point to Members on the day he made his pre-budget submission in the audio-visual room.

Mr. John Dunne:

Yes. It is not so much the Department because operationally it is a matter for the HSE which acknowledges the problems. I have said to the HSE that I believe that it is a systemic issue and it has asked for examples. It wants to know the name of the guy being put to bed. The point is that we can all sort out the problem for the guy who must be put to bed. The problem is the 19 other cases that we do not know about. I have quite a colourful spectrum of stories from across the country. Individual carers are terrified and, to be fair to the HSE, their approach is not necessarily a rational one. Those carers are terrified that if they complain they will lose their jobs, particularly in the current climate of cutbacks. They think that if they complain they might lose their jobs and, therefore, they will not complain.

Jerry Buttimer (Cork South Central, Fine Gael)
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I speak for everyone present when I say that it is unacceptable that a person, be it elderly or disabled, is put to bed at 3.30 p.m. because of a diktat from an official. That is not good enough.

Mr. John Dunne:

Let us be clear. It is not a diktat from an official and I do not suggest that there is badness anywhere. It is my assessment that there is a culture, in certain parts of the public service, where people do their job on their terms. Under the Croke Park agreement they continue to do their job on their terms but have now been moved to a new job. I do not know the individual that I am talking about but I presume that his or her previous job involved doing home help. That means that he or she stayed in the company of a person and did a bit of housekeeping, shopping or whatever. The work was not time critical and the carer was wanted in the middle of the day. The person has now been redeployed to a different sort of job which involves giving a certain degree of personal care and helping somebody into bed. There has been a vocal campaign on their behalf - and I am being general here - that these people deserve work and must be given work. In order to do that they are being redeployed. I have no issue, in principle, with that as long as he or she is properly trained and accepts that if he or she has a different job that it is done appropriately. The problem is that there been a culture of mismanagement within the system and there does not seem to be an ability to drive change. I do not suggest that there is badness anywhere. There are gaps in the system and there is a cultural and systemic problem.

Deputy Ó Caoláin raised the issue of cuts. Obviously there have been cutbacks. Deputy Regina Doherty also raised the matter in terms of a geographical spread. Two shifts have taken place and both are strategically sensible. First, there has been a shift from home care to home help. Where resources are scarce it makes sense to concentrate available resources on the people who have the greatest level of dependency but one must not write off others. That is why we asked for that piece to be backfilled.

Second, for some strange reason there has always been a better level of home help and home care support in the south and west than in Dublin and along the east coast. The HSE is trying to strategically re-align its spending in that area to match the demographic. It is hard to argue with that aspiration.

The net reduction of 2,500 in terms of recipients of home supports was mentioned. At this stage people are experiencing substantial cuts but they tend to be marginal rather than a total abolition of services. We must bear in mind that there is a constant turnover in home care and home help, particularly in home help, when people die or go into residential institutions. That results in significant savings in the short-term because the budget paid for home care is not reallocated but then there is a longer queue created because people must wait for new services.

Senator Burke asked for home care funding to be ring-fenced. I shall return to the management culture and state that I am more than slightly nervous at the concept of ring-fencing. We need change but ring-fencing would create an obstacle. I shall return to the statutory obligation and ask for equal priority to be given to the two pots of money. It would ensure that it is not a matter of having no home care or giving six times as much funding to put a person's granny where she does not want to be. That is literally where we are at and is purely down to legislation. The provision is not even politically controversial because the previous Government prioritised it and the current Government has it somewhere on its shopping list. The Government is wasting money every week that we are without that legislation.

I shall make a final point on the institutional side of the debate. Mr. Dillon is right that it is the Department of Health rather than the HSE that writes the strategies. It is the same group of officials who will write the legislation and that is where extra staff resources could be provided. Enacting the legislation is the single most important thing the committee could do for the sector.

Jerry Buttimer (Cork South Central, Fine Gael)
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I call Mr. Dolan and I ask him to be brief as we have more speakers.

Mr. John Dolan:

I thank the members for their questions and interest in the debate. Deputy Ó Caoláin asked two questions on the implementation plan and the national disability strategy, NDS. I shall add the question by Deputy Regina Doherty to them.

The national disability strategy has been in existence for the past six or seven years. There has always been an issue about adding an implementation element to it. The strategy is a Government plan and is not just for the Department of Health. It is potentially quite powerful because it can examine the determinants of health and the interconnection between health, social welfare, education, employment and factors like that. The problem is that we will not have it until January or February because it has been delayed three times this year and that is since the Government took over. The strategy will come after the next budget which may contain the same level cuts as last year, perhaps more. That is a big issue. The Croke Park agreement is also still in place. There has been talk about adjusting the Croke Park agreement and formulating a Croke Park II but that would be two budgets away. The strategy is also connected with public service reform but nobody has copped on to that. There is a broad disability strategy and there are strategies for carers and children. It is helpful if one can see that all of the strategies are interwoven.

During the last debate before the general election, the Taoiseach and the Tánaiste were asked by Miriam O'Callaghan to identify one social justice priority. In a flash the Tánaiste said that it would be the disabled and the Taoiseach spoke eloquently about people with mental health needs. Unfortunately, they have not put their words into action.

Deputy Ó Caoláin asked about the decisions that have been taken, particularly the €10 million cut to the personal assistance service announced on 30 August. How could €10 million be saved from the €40 million budget for personal assistants with four months remaining in this year without closing down the service lock, stock and barrel? Like my colleague, Mr. John Dunne, I do not think anyone was trying to do that. At a senior level in the Department of Health and the HSE people had just carried out a value for money report on the disability programme. The big issue for people with a governance concern about health is why was such a consequence not spotted earlier. We very much welcome that the proposal has been withdrawn and that the cuts will be made somewhere else.

Deputy Healy raised a quality of life issue but I shall not spend time discussing it. Everyone has said, in different ways, that quality of life is about keeping people where they want to be, with their families, and providing support to people, often at a modest level, at an appropriate time and in an appropriate manner.

There was a question from Deputy Doherty about children in special schools. I do not have any evidence on that. We can talk to the Deputy later, or perhaps our colleagues who will speak later might have some idea.

Peter Fitzpatrick (Louth, Fine Gael)
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I welcome the witnesses. The presentations were excellent. I am a Government backbencher and none of us wishes to impose any cuts on anybody. If there are cuts, it is important they are minimised. I have been talking to the Minister, and I am trying to do my best for all the groups.

Mr. Chris Macey gave me a shock, and it is not because I am a non-smoker. A total of 79% of the price of a packet of cigarettes goes to the Government, while in the UK 90% of the price goes to the government. That is not acceptable. He said the tobacco industry makes €1.36 billion in profits per year and that it is subsidised by Irish taxpayers to the sum of €1 billion. It has reached the stage that we will have to examine the damage tobacco is doing to people. Cancer is an awful disease and I have experience with it because my father died from lung cancer. It was due mainly to smoking, which put me off cigarettes. My father got up every day at 7 a.m. In our house the living room and kitchen were one big room and for 15 or 20 minutes every morning it was unbelievable to listen to him coughing. It was only a matter of time but we could not get him off cigarettes. The Government will have to put some type of levy on smoking tobacco and the money should go back to the medical people, the HSE, cancer research or the Irish Heart Foundation. At this stage the industry is making far too much profit. It is sickening. The Minister is talking about introducing a smoking ban in cars carrying children. That is very important. I am delighted with the smoking ban because I like a night out in a restaurant for a meal.

I have met Mr. Sean Dillon on a few occasions and he is doing a fantastic job. In fact, I met him in Drogheda.

Jerry Buttimer (Cork South Central, Fine Gael)
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The Deputy should be very brief.

Peter Fitzpatrick (Louth, Fine Gael)
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On 9 October the committee issued a letter asking the Minister to reverse his cuts and so forth. Cuts of 14% from 2008 to 2011 is a lot. Mr. Dillon has a fantastic organisation and we will all try to help him. People think the Government is imposing these cuts purposely, but that is not the case. The bottom line is that the country is bankrupt and we are trying to do our best. Health is a very important issue at present and the commitment we will give is that any cuts will be minimised.

John Crown (Independent)
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I welcome our guests. Obviously, I join in the support for a gradual ratcheting up of the pressure on the tobacco industry. I favour punitive levels of tax on its profits. There is nothing about the tobacco industry we should be trying to protect. There is no economic argument in the macroeconomics of the country to support keeping the tobacco industry running either nationally or internationally. A great deal of nonsense is talked about the critical importance of the tobacco industry to farmers, manufacturers and so forth. There is a colossal opportunity cost associated with the money which is spent on tobacco products, in addition to the obvious health and, indeed, moral benefits which would accrue from everybody stopping smoking. There would be vast economic benefits. For that reason we must understand that the tobacco industry, although it is legal, is unethical and evil. We should be trying to stamp it out. That should be our goal. These are people whose business plan can be summed up in four words: addict children to carcinogens. If the tobacco company does not do that, it fails.

For that reason I support the increase in tax, but I would go further. During the six months when Ireland holds the Presidency of the EU, I propose a very far-reaching policy which I believe our Government should espouse and which every Member of the Houses should support. We should get the EU to commit itself to the idea that by the year 2030 it will be illegal to do any commerce in tobacco, that is, grow it for profit, sell it, import it and manufacture products. If we invented tobacco tomorrow, it would not be legal. There is no doubt about that. Substances which are far less carcinogenic than tobacco products are routinely banned. They cannot be used in the manufacturing, environmental and many other sectors. We would never allow it. It is here because it has been grandfathered in, so we should commit ourselves to that policy. As a step along that route, we should also consider a very concise, EU directive that bans any contact between a tobacco company and a public relations company until such time as we implement a complete commercial ban. We have no business allowing the industry to use propaganda to get more addicts.

Denis Naughten (Roscommon-South Leitrim, Independent)
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On the first two submissions regarding smoking tobacco and the proposal for the establishment of a regulator, how would that tie in with Single Market rules and are there implications in that regard? There is great merit in what the organisation is doing, but perhaps the witness would discuss the logistics of it.

With regard to the other presentations, I have a question about home help. Is there not a problem with the consistency of home help delivery throughout the country? In some parts of the country there are one hour allocations while in others there are 15 minute allocations. There is also an inconsistency in what home help provides. It is personal care in my part of the country and in many others, but in other areas it also includes home support, for example, assisting a person who lives in an isolated area. That lack of consistency is causing significant anomalies and people are losing out.

In the three presentations from Mr. John Dunne, Mr. John McCormack and Mr. Sean Dillon there is a consistent theme that there is a lack of joined-up thinking between the acute sector, the hospitals, and the community sector and that significant savings could be made if there were joined-up thinking in that context. I have a question for Mr. John Dunne on that issue. There is a statutory right to nursing home subvention, or the fair deal scheme. He is arguing that this statutory right should be extended to community services. In the current economic climate that statutory right will not be extended. What is being considered at present is that a similar means assessment would be introduced for community services as is currently in place for the fair deal scheme. Is there an argument to be made to move that a step further whereby if an applicant is approved for the fair deal scheme, they can have the option of going into long-term residential care or having a community fair deal package put in place? It is a type of middle ground but it ensures that elderly people are not left in a position where they must either go into the home or be left without any services.

Catherine Byrne (Dublin South Central, Fine Gael)
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I wish to make a few short comments and ask a question. It is a pity Deputy Kelleher and Deputy Troy are not here. They left in good time because I had intended to slate them. The reason we are here is the reckless spending of previous Governments over the past 15 years.

I started to read the organisations' budgets and presentations at 10 p.m. yesterday when I returned from canvassing for the referendum. I went to bed at 11.15 p.m. and got up at 5 a.m. today to continue reading them. I was astonished the Chairman would have nine groups before the committee today and wondered how we would deal with them. However, we are doing that because the Chairman has told us to do so.

Jerry Buttimer (Cork South Central, Fine Gael)
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It was agreed at a previous meeting.

Catherine Byrne (Dublin South Central, Fine Gael)
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I probably was not at that meeting. As I said in the Chamber a few weeks ago, I am not the straw man or the tin man in "The Wizard of Oz". I have a heart. Parents on both sides of my family have needed carers, home help and every service to help people remain in their home. What I say next will probably contradict what I have just said, but I cannot disagree with anything the representatives of the Irish Heart Foundation and the Irish Cancer Society said. I also support Senator Crown on this. I pass the Coombe Hospital every day on my way home and it is bewildering to see people standing with a drip in one arm and a smoke in the other hand. I had reason to visit a person who was ill in St. James's Hospital two weeks ago and was surprised to see people were still standing outside smoking. I met a lady three weeks ago when I was canvassing for the referendum and she stood at the door and complained that she was waiting for 12 weeks for a pair of socks from the HSE, yet she could tell me that she smokes 25 cigarettes a day. People in this country need to wake up.

Its costs amount to €29 billion and we must examine the management of people being addicted to things. Senator Crown is not far off my opinion on this.

I have two further comments. I apologise for taking so long but I thought it was important to tell those two stories. I am in favour of the review of home help services. With relatives, friends and parents, I have experience of home helps coming into the house for one hour and spending half of the time having a slice of toast and a cup of tea. This is not about companionship, it is about helping a woman with one leg to be able to make a cup of tea, about sitting her down and taking care of her needs. There is a need to review the home help service. This the beginning of a new era. In communities, people are beginning to cop on that Mary will not come in to sit down with the person for an hour. People have family, friends and neighbours and we need to look into services in the community. There are plenty of organisations and there are many unemployed people who are willing to do something different in the community with their lives while they are unemployed. That must be part of it. I have not yet finished.

Jerry Buttimer (Cork South Central, Fine Gael)
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I ask the Deputy to be brief because she has spoken for four minutes.

Catherine Byrne (Dublin South Central, Fine Gael)
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I have great respect for the Carers Association. I read the submission last night and I think the political pun contained in it is unwelcome. I will leave the House whenever people decide not to elect me. I hope not to receive a pension until I am 68 years of age. I am not interested in what happened in the past in political life in this building, I am interested in the future. As public representatives, we must respect the fact that we will not receive a pension when we leave the premises. I agree with the idea and it was not necessary to have it otherwise. I agree with the suggestion regarding carers having more than six weeks after the person they have been caring for has departed. I do not agree with a period of a year but I support the idea of six months.

Why does someone who is a full-time carer want a free GP card? Perhaps I read the suggestion wrong but that is what I picked up. The submission refers to record numbers of people with physical disabilities. What disabilities do these people have if they are carers? What records exist? Perhaps the witnesses are telling me that someone who was a carer ends up with a physical disability from being a carer. What are these physical disabilities? I do not know anyone who has been a carer who has a disability after the loved one dies. Perhaps I am living on a different planet. I want to say much more but the Chairman will not allow it.

Jerry Buttimer (Cork South Central, Fine Gael)
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I will bring the Deputy back in at the end of the discussion. The Deputy had five minutes, which is more than any other speaker.

Catherine Byrne (Dublin South Central, Fine Gael)
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I appreciate that.

Mr. Chris Macey:

I thank Senator Crown for his comments on tobacco. I endorse everything he said, which would represent a better future than the present world. Regarding Senator Crown's comments on the tobacco industry and its PR machine, the big red herring is that tax is fuelling smuggling. Evidence from the UK this week contradicts that point. The UK has had a tax escalator over the past ten years of 2-5% and cigarettes in the UK are more expensive than they are here. The price equates to approximately €9.30, when converted, in the UK and €9.20 here. At the same time, the UK has reduced the smuggling rate from 21% to 9%. It has done so by enforcement. While Ireland has laid off hundreds of customs officers, the UK has introduced better enforcement and spent money on cessation activities in a way Ireland does not. It has reduced the number of smokers by 2 million and child smokers by 50%. It has reduced its smuggling rate while increasing taxes. The UK takes in an extra £2.9 million for an outlay of £300 million in that area.

In response to Deputy Naughten's question, there is an EU issue in terms of a regulator. We have had discussions with the Revenue Commissioners and the Department of Finance and both sides are checking out the legal aspects of it. They are interested in the proposal but there is legal work to be done. As a concept, it's time is coming.

Deputy Catherine Byrne's comments on people smoking outside hospitals with drips shows the addictive nature of it.

Jerry Buttimer (Cork South Central, Fine Gael)
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On that point, Cork University Hospital has a no smoking policy within the campus. Is there anything we can do in legislation, beyond introducing the smoking ban, in respect of the confines of a hospital and its perimeter? Mr. Macey is correct that it is appalling to see patients or staff members, particularly in a hospital, smoking at the gate or in a bus shelter. It is unacceptable. I am not against the rights of people to choose to smoke.

John Crown (Independent)
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We should do the same in Leinster House.

Jerry Buttimer (Cork South Central, Fine Gael)
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I do not have a problem with that but-----

John Crown (Independent)
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We should make the entire confines of Leinster House a smoke-free zone.

Jerry Buttimer (Cork South Central, Fine Gael)
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-----I am sure some of the smokers would be less than enamoured with Senator Crown. We must examine smoking at the perimeter of hospitals.

Mr. Chris Macey:

As Senator Crown said, measures should be introduced for public areas and public buildings or within the campus of a public building. Studies show the duplicity of the tobacco industry. The nicotine content of cigarettes is on the increase all the time so it is becoming more difficult to give up smoking. We have a proposal from the Department of Finance to set up a group and bring in Departments and the tobacco industry to talk about these issues. It is against the WHO framework convention on tobacco control, to which Ireland is a signatory, but we must also question what the tobacco industry can do to help us sort out the issues of tobacco control. The industry is not interested in that.

Mr. John McCormack:

I support Senator Crown in his comments on the actions that could be considered at European level and the options in respect of Ireland holding the Presidency next year. One of the countries with the greatest smuggling problem is Estonia, even though it has the cheapest cigarettes. The link between the high price of cigarettes and smuggling is a fallacy created by the tobacco industry. We have heard much about the resources needed. The budget submission from the Irish Heart Foundation and the Irish Cancer Society amounts to €150 million on the table. Some €150 million is on the table by taking more money from big tobacco because of the havoc it is causing to the health of Irish people.

Deputy Catherine Byrne referred to the Coombe hospital. The tobacco industry is expert at marketing to women. It has pink, soft cigarettes with soft packaging that is particularly aimed at women. The rate of lung cancer is increasing and more women in Ireland die from lung cancer than from breast cancer. Smoking rates are rising among women and falling among men. Much of this is due to the fact that the tobacco industry is expert at recruiting young women to smoke. It is crucial the tobacco industry is taxed out of existence so that it can commit less money to PR and marketing to young women.

Mr. Sean Dillon:

I have two questions to answer. The first was from Deputy Denis Naughten on the consistency of service delivery. Far greater and braver people than I have tried to get the bottom of local HSE management of these services around the country. It comes down to the implementation and management of the service delivery, particularly in respect of home help services.

Jerry Buttimer (Cork South Central, Fine Gael)
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How often does the HSE interact with Mr. Dillon and his organisation?

Mr. Sean Dillon:

We do not interact all that often.

Jerry Buttimer (Cork South Central, Fine Gael)
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Why?

Mr. Sean Dillon:

We are an alliance. The Carers Association is quite active in the delivery of services.

Jerry Buttimer (Cork South Central, Fine Gael)
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Does the HSE interact with Mr. McCormack's organisation?

Mr. Sean Dillon:

We interact with the HSE in advance of launches where it has recently started sounding us out on our opinions. There is a difference between home help and home care packages. The home care service is called enhanced home care because it is a far higher dependency type service. Personal care enters the equation.

That service was tendered and at least it introduced an element of regulation and standards to the home help service.

The difference between home help and home care packages is causing some of the problems. Ultimately all these things should be based on need and the assessment of need. A standardised needs assessment would allow for a determination of the nature of the care plan required. The HSE has a pilot project for single assessment. This is behind schedule. However, it will mean that whether a person is in Donegal or west Clare, south Cork or Dublin, the same assessment of the individual's care needs will apply. This should at least begin the process of standardisation of the delivery of care.

Deputy Catherine Byrne asked about a review of the home help service. Our concern is for the person who receives the service and we will wholeheartedly support anything that improves it. However, instead of the review to determine the problems, we note that the service is cut in advance of any review. The demand far exceeds the supply. I suggest we should see how the service can be improved rather than cutting the supply in the face of increased demand.

Mr. John Dunne:

Deputy Naughten raised the matter of consistency. We carried out a listening exercise early in the year. I travelled around the country and I met groups. We asked them whether they noted a difference between the two services. It seems to boil down to whoever is delivering the service. If one had a good person it did not matter what hat he or she was wearing when they went into a house and the reverse applied with a person who was not so good. As Mr. Dillon said, there is a lack of consistent management and as a consequence some of the money is being wasted and better results could be achieved. Mr. Dillon also referred to the issue of standards. The Health Information and Quality Authority, HIQA, has stated it will be unable to regulate home care until 2016. In fairness to the authority, it has been very clear in stating what it wishes to do in the meantime. We would be of the view that we are more important but at least it is a considered position. In the meantime, the HSE has begun to put in place its own framework using this competitive tender and applying standards. The difficulty now is that the HSE is cutting across that. The people who won the right to deliver services based on that tender are now being displaced by home helps who are neither qualified nor trained and to whom these standards are not being applied. The system demands certain qualifications but the staff delivering the care are not qualified. This is a fundamental issue but when I raised it with the HSE the response was that it was hoped to sort the problem in the next year or two. If I said to anyone that I would sort something out in the next year or two, I know what the public sector's response would be if that were to be my defence.

On the question of a statutory right, there is a statutory right to residential care but in the current financial climate there is no prospect of a statutory right for community care. For God's sake, legislators have created a statutory right for the most expensive option. If a statutory right for the cheaper option is not created, the State will be condemned to spending money on the most expensive option.

I thank Deputy Byrne for taking the time to read the submission. I was not making a cheap political shot. I made a very deliberate decision that we would put nothing in our pre-budget submission that we could not say how it would be paid for. I refer to the question of the transition period. A carer who has spent a lifetime caring for a person is formally unemployed six weeks after the person dies and the system then forgets about them. It was a question of how to pay this cost. At the time there was the issue of those who had been county councillors who had to forego the dual mandate and were compensated. To be clear, we did not say that those payments should be abolished. We simply argued that a very small allocation from the pot would pay for this transition. I do not apologise but it was not a cheap shot.

On the question of why full-time carers want a free GP card, the carer's strategy highlights the very obvious connection, which is acknowledged by the Government, that carers are doing a job for the State. I do not like the notion that they are working for their social welfare payment. They are saving the State a lot of money. They need their health in order to do the job. Employees, even when unpaid, are entitled to holidays and to a certain level of health and safety consideration. This leads on to the point about physical disability. I can describe a case of a big man who is bedridden and his wife, who is of small build, is the carer. The assessment decided it would take two people to move that person from the bed and the HSE decided it could not spare two people. It left the wife to do it. Patient moving or handling cause physical injury to carers. A body is heavy to move and our system does not even provide training to people on how to do it, never mind to provide help. That is how carers suffer physical ill-health but they also suffer distress and stress.

Carers also suffer in another third way. I can describe a case. A daughter who cares for her mother needed to go into hospital. She was advised to bring her mother to the accident and emergency department and to leave her there. We intervened and the matter was dealt with in a different way. In such situations it is often the case that carers will not go into hospital. They will put their own care on hold and in the long term, the health of both people collapses.

Mr. John Dolan:

Deputy Fitzpatrick spoke about the 14% cuts in recent years and he said the country is bankrupt. The country is bankrupt in the sense that we do not have income to meet expenditure. The trick for any social democratic State is to ensure we are not also socially and morally bankrupt. We have to find or try to find a way to match the growing needs with the available resources. Many people in this country are unemployed, unfortunately. That is the crux. It cannot be a case of telling people that we are broke, that they should go away and return when we are flush. I know the Deputy does not mean it that way.

Deputy Naughten spoke about the lack of joined-up thinking between acute and community care and the possibility of savings. I am loath to talk about the savings. The issue is that we have a big demographic profile in this area. Ironically, the success in the health area over the past 15 years in bringing down the mortality rate has increased the morbidity rate. We did not take this on board. People who survive strokes do not go out to play football the next day; they have conditions and suffer losses as a result. It is the case that, thank God, more people with disabilities are being born who would not have survived to birth ten or 20 years ago. According to the Health Research Board, the number of people waiting for personal assistant services, home help services and care attendant services equals the number of people who have these services. Therefore, the demographic factor must be considered in the equation.

Deputy Byrne referred to the work of home helps. I spoke about trying to get some kind of national cohesion, some kind of social plan from the Government. Many community groups and organisations could be supported as part of an overall Government approach. She is correct that it should involve neighbours and local groups befriending people and this is what voluntary groups do. Then the very particular skill-sets and services that are required can be marshalled and people can be paid to provide them.

I thank all the members for their interest.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank the delegates for their attendance. I acknowledge the presence in the Public Gallery Ms. Cliona McCormack of the Irish Heart Foundation, Ms Rachel Moore of the Irish Cancer Society and Ms Joanne McCarthy of Disability Federation.

Jerry Buttimer (Cork South Central, Fine Gael)
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We are now in public session. I welcome everybody to the second part of our meeting which is focused on the pre-budget submissions from the Children's Rights Alliance, Mental Health Reform, the National Federation of Voluntary Bodies and the Irish Hospice Foundation.
We must vacate this room by 12.45 p.m. Before I invite the witnesses to contribute, I draw attention 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 this committee. However, if they are directed by the committee to cease giving evidence in respect of 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 nor make charges against any person, persons or entity by name or in such as way as to make him, her or it identifiable. 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 by name or in such a way as to make him or her identifiable.
I call on Ms Maria Corbett to make a presentation on behalf of the Children's Rights Alliance. She has five minutes.

Ms. Maria Corbett:

I thank the Chairman and members for the invitation to make a presentation to the Joint Committee on Health and Children. I am conscious that I could speak at length so I have decided to keep it short and deal with the issue of child income supports and squeeze in the issue of the new child and family support agency.

I am Maria Corbett and I am with the Children's Rights Alliance. The alliance is a coalition of 100 organisations which are working to promote children's rights and to make the UN Convention on the Rights of the Child a reality in Ireland. We are very interested in the budget which has a major impact on children.

The Government in its programme for Government made a commitment to the establishment of a new child and family support agency early next year. In last year's budget the Government created a new Vote for the new agency. The new agency comprises the Family Support Agency, which has a clear budget and also the child and family services of the HSE. It is unclear what budget the HSE allocated specifically for its child and family service as this information was not in the public domain up to now. It is unclear what the HSE will allocate to the new agency. It is absolutely critical that we ensure that sufficient resources are granted to the new agency.

The new child and family support agency to be formally established next year will be a statutory body tasked with promoting the welfare and protection of children. It will also be tasked with supporting families in Ireland. It is absolutely critical that it gets an adequate budget and that it starts on the right foot.

I urge the committee in its work on children and the budget to watch the funding of this new agency closely. I understand the legislation establishing this new agency will come to the committee. I am flagging it for members and perhaps we can engage with them when they are reviewing the legislation.

I am almost loth to mention the children's referendum on Saturday, 10 November. If that referendum is passed, and we are strongly advocating a "Yes" vote, issues will need to be considered by this committee. Perhaps we can consider how best to address the questions of legislation and resources to make the outcome of the referendum a reality.

My main focus is on child income supports. People will know that throughout the years of the Celtic tiger, Ireland did not address the serious issue of child poverty. It is a national scandal that in a wealthy modern western European country we still have such a high rate of child poverty. The figures are astonishing. Almost one fifth of children in Ireland are living below the poverty line. Of those approximately 8% of children are living in deep poverty. That is just not acceptable in this day and age. We need to grasp this problem. We need to set out at a political level an ambitious child poverty target so that we begin to address this issue and take ownership of it. I am aware that we are in straitened economic times and that we need to figure out what to do with the annual budget. I am also aware that we spend a significant proportion, 2.2%, of GDP on child income support. I am conscious that money is invested in this area.

The issue I wish to raise is whether that money is being spent in the best possible way. It is absolutely critical that we ensure that cash and other supports go to vulnerable families. There are many families who are really struggling. The child benefit payment is an integral part of the support. While I acknowledge the child benefit payment needs to be reformed, I am also flagging that it would be very destabilising to make a dramatic change to the child benefit for the families who depend on it. The reality is that families with children are three times more likely to be in debt from ordinary household expenses. We need to be very conscious that Ireland has a very vulnerable population with children.

Our official position is that we do not wish child benefit payment to be cut, to be means tested or to be taxed but we are in favour of reform. The Department of Social Protection has produced a set of proposals around it. I wish to give members a sense of the direction in which we are leading on this issue.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank Ms Corbett for making her contribution within the five minutes allocated.

The next speaker is Dr. Shari McDaid, a policy officer with Mental Health Reform. I welcome Dr. McDaid.

Dr. Shari McDaid:

I thank the Chairman and members of the committee for inviting Mental Health Reform to appear before it. I believe the committee has received our pre-budget submission in advance.

I am the policy officer with Mental Health Reform, which is the national coalition advocating for improved mental health services and implementation of the governmental mental health policy. We want to bring to the notice of members the voices of some of the people who receive mental health services. I will share some comments from individuals who have shared their views with us in the past month or so. One person said that if one does not have good mental health one has nothing.

Another person said that if funding is cut, mental health services will not evolve and will instead return to the old times that were experienced 15 years ago, with more readmissions and less care. We also heard from someone who said that they do not want mental health services to go backwards and that it is all very well for the Government to try to cut the mental health budget, but it does not realise the impact these cuts have on people on the ground.
The reality is that more people are experiencing poor mental health in Ireland. A survey that was recently published by the national stigma reduction campaign, See Change, found that 15% of the population claims to have experienced a mental health problem in 2012. That is more than double the number of people who said they had a mental health problem in 2010. Irish mental health services are under significant strain. The current staffing level is 23% below the level recommended in A Vision for Change. Irish mental health services are short 2,645 whole-time equivalents at present. As a result, staff are stretched. This kind of pressure leads to people not getting the follow-up care they need after being discharged from hospital. There are no early follow-up appointments. It leads to nurses not being able to provide timely follow-up in day hospitals when people are going through a difficult time at home. If a person who has experienced hospitalisation in the past, but is now successfully living at home, begins to feel they are becoming unwell and goes to their local day hospital for an appointment, they may be told they cannot get a follow-up appointment as early as they need because of the lack of adequate staff. There is Irish evidence that comprehensive community-based mental health services cost less than a hospital-oriented service. A study conducted in Kildare and published this year found that a community-based service is 21% cheaper per capitathan a traditional hospital-based service. The main differences between the two services is that the provision of day hospital and home treatment in the comprehensive service is absent in the hospital-oriented service.
Mental Health Reform has made a number of specific recommendations for budget 2013 to keep reform on track. First, the Government must keep its programme commitment to allocate €35 million next year for the continued development of community-based mental health services. Mental Health Reform welcomed the Government's commitment in budget 2012 to allocate €35 million for the development of community-based mental health services, suicide prevention and access to counselling through primary care. We have not yet sees this commitment realised, but we remain hopeful that the promised staff will be in place before the end of the year. Given the significant gap in staffing, we are asking the Government to keep its commitment to an additional €35 million for next year along with an exemption from the moratorium for the relevant posts. It is important to note that the €35 million allocated this year was not really additional funding, given that the mental health budget included a 5.6% cut in regular spending. Even with the planned provision of €35 million this year, there was an overall 1% cut in the budget for mental health services. One can imagine what the situation is now that the €35 million has not been realised.
Mental Health Reform also welcomed the commitment in budget 2012 to provide €5 million specifically for the development of counselling services through primary care. We consider this to be a positive mental health promoting initiative. Given the links between poverty and poor mental health, it is particularly important for the Government to consider in budget 2013 how those on low incomes as well as those on medical cards can access counselling services. The Minister, Deputy Reilly, has made a commitment to appointing a director for mental health as part of the restructuring of the HSE. We are concerned that without the necessary staffing resources, a director will have little impact to assist in managing the change programme. If the directorate is to fulfil the intentions of A Vision for Change, it must have multidisciplinary input. It also requires budgeting expertise and administrative support if it is to be effective. It is difficult to plan mental health services because we have no information on community mental health services in Ireland. If one was running a business, one would want to know how many customers one has, how often they shop and how satisfied they are with one's service. We have no idea how many people are using community mental health services. We had more information about community mental health services in 1984 than we do now.
Mental Health Reform believes that partnership between public mental health services and the voluntary sector is vital to implementing A Vision for Change. Mental health voluntary organisations provide vital support services such as peer and family support, telephone helplines and information in the community. HSE-funded mental health voluntary organisations cannot afford to incur additional cuts without affecting front-line service delivery. It is vital that the Government continues to support the reform of Ireland's mental health services. We ask the members of the committee to champion the issue of mental health in the run-up to budget day in December. In particular, we urge members to write to the Minister for Health, Deputy Reilly, to impress upon him the economic good sense of investing in community mental health services.

Jerry Buttimer (Cork South Central, Fine Gael)
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I welcome the witnesses from the National Federation of Voluntary Bodies Providing Services to People with Intellectual Disability: Mr. Brian O'Donnell, who is the chief executive; and Mr. Christy Lynch, who is the chairperson.

Mr. Brian O'Donnell:

I thank the committee for the invitation to attend this morning's meeting. Much of what I have to say is a reinforcement of what my colleague, Mr. John Dolan, said earlier. I will place a particular focus on people with intellectual disability and their families. The Chairman will be aware that Ireland is almost unique internationally in so far as the voluntary sector provides the substantial majority of services to people with intellectual disability. Up to 85% of such services are provided directly by voluntary organisations on the basis of service level agreements with the HSE, which has statutory responsibility for this area. Voluntary organisations have a long and rich tradition of providing services to people with intellectual disability in Ireland. In some cases, such as Stewart's Hospital and the Daughters of Charity, this form of provision dates back to a time before the foundation of the State. Voluntary organisations are typically an amalgam of members of local communities, parents, friends, people with an intellectual disability and staff who come together with the common objective of responding to local need by providing the best possible support to people with intellectual disability in their communities.

Over the decades, services have developed to the extent that they are now internationally recognised for the range and quality of supports provided. Voluntary organisations are to the fore in promoting quality within services. Following work done by our federation’s quality sub-committee in the 1990s, voluntary organisations took the initiative in developing quality systems. A recent survey of our member organisations confirmed that the majority have achieved international accreditation as high-quality providers of services to people with intellectual disability. A unique characteristic of service provision in Ireland is the high number of organisations which were founded by parents and friends of people with intellectual disability. These organisations, which were established on a voluntary basis, were born out of local communities and therefore have strong ties and affiliations with the communities in which they are embedded. Parents have a strong role in their governance, as evidenced by the number who are members of the respective boards of directors. The parental voice is an essential and valued perspective and the federation is committed to ensuring this voice is heard. To this end, last month we organised comprehensive briefings for parents on the implications of funding cuts and on what we are doing as a sector to manage the cuts and to seek protection from further cuts in the forthcoming budget.

Being closely identified with local communities gives voluntary organisations access to significant voluntary input, which has evolved from fund-raising activities to include befriending programmes, policy development and supporting people with intellectual disability to enjoy meaningful lives. The value of this input, which is obviously provided at no cost to the State, has been conservatively estimated to be approximately €50 million per annum. It has always been the case, within a context of finite resources, that the demand for the services of voluntary organisations has exceeded supply. Therefore, there has always been a focus on the efficient and effective use of the resources available. There has been a constant drive to innovate and to develop newer and better solutions to meet the diverse needs of the people we support. This focus is particularly sharp in the current economic climate. For example, the needs of over 650 school leavers were met this year through the development of a series of innovative solutions in the absence of additional resources. That was the first time that any of us can remember when no resource at all was available to meet the needs of school leavers. That was managed this year. We have fully engaged with the value for money and policy report that was published recently. We carried out a national survey of our membership which confirmed that significant progress has been made, and continues to be made, in implementing the recommendations contained in the report.

I would like to set out the challenges that are facing the voluntary sector at present. Like everybody else in this country, those involved in this sector have faced significant cuts over the past four years. In our case, there has been an aggregate cut of approximately 15% at a time when the demand for services has been increasing rapidly and the changing needs of those already availing of our services have never been greater. Many organisations are struggling to stay afloat and have incurred financial deficits to maintain essential services. The boards of many registered companies limited by guarantee are concerned that they may be breaching the Companies Acts by trading recklessly. Board members are worried about the implications of this for their organisations and for themselves personally. Some organisations are so concerned about this that they are closing services. Responsibility for services at Cregg House in Sligo, for example, was handed back to the HSE because of real concerns about the deficits being encountered.

We are also concerned with regard to the unravelling of much of the progress that has been achieved in recent years in both the quality of the service and the quality of life of the people we support. Given that the sector that was in the vanguard in the context of promoting quality, we are worried now about the diminution of quality within services. In the face of the funding cuts, there is evidence of re-institutionalisation at a time when Government policy is to achieve the opposite. People with intellectual disabilities and their families rightly expect there to be no diminution in either the quantum or quality of the services they receive. Similarly, the political system expects that despite funding cutbacks, essential services will be maintained and that new services will be developed, for example and as in the current year, to meet the needs of school leavers. This situation will also obtain next year and in future years.

The demographic trends in Ireland to which I have already alluded are placing greater demands on services and supports than ever. Waiting lists for services will inevitably lengthen and a population which is growing older will place greater demand on the sector in terms of meeting changing needs. As parents age, their ability to care will diminish. The economic crisis, which is likely to be with us for some years, means that the drive to do more with less resources will continue unabated and the need for us to innovate and do things in a radically different way will remain.

It is imperative that we protect people with intellectual disabilities from any diminution in the quality of or a reduction in services as we struggle to continue to meet all needs with significantly reduced resources. As a voluntary sector, we must at all costs avoid a dumbing down of services which have been so assiduously built up over the years. The sector is fortunate in having staff who are highly committed to the individuals they support. The challenge for us is to achieve an appropriate mix of people who are competent, skilled and possess the right knowledge and expertise to support people with intellectual disabilities to have meaningful lives.

In embracing the challenge by which we will be faced in 2013, we are conscious that there is a limit to what can be done in the context of significantly reduced resources. Many of our organisations are indicating that they have reached the end of the line in terms of their ability not only to maintain existing front-line services but also in the context of even considering the development of new services. In 2012 alone, a cut of 3.7% in funding equated to €33 million. In addition, other budgetary considerations, such as increases in PRSI and VAT and the payment of increments, added €11 million to our costs. Furthermore, the extra resources required in respect of school leavers added a further €10 million to our costs. All of this means that we were obliged to find an additional €54 million in the current year.

I indicate how this was achieved in the material circulated to the committee. We surveyed our members and asked how it should be done. I need not go into detail other than to state that all of the big-ticket efficiency measures which could be taken have been implemented. To use the cliché, we climbed every tree in search of the money. We remain vigilant in the context of trying to achieve further efficiencies. However, we have reached the end of the line in the context of achieving major efficiencies and we are seriously concerned with regard to whether this will lead us in 2013 in the context of front-line services. The consequences for people with intellectual disabilities and their families will be very severe.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank Mr. O'Donnell and welcome Ms Caroline Lynch, advocacy and communications manager with the Irish Hospice Foundation. Ms Lynch has five minutes in which to make her opening statement.

Ms Caroline Lynch:

I welcome the opportunity to address the committee. Both our pre-budget submission and my opening statement have been circulated to members. I do not plan to go through the latter word for word because we are pressed for time. There are three issues on which I wish to focus, the first of which is the specialist palliative care budget. I would appeal to the Government that there should be no cut to that budget this year. The second issue I wish to raise involves strategy and the position with regard to end-of-life scenarios. The third and final matter relates to paediatric palliative care, on which I will provide an update.

The Irish Hospice Foundation is the national charity dedicated to all matters relating to dying, death and bereavement in Ireland. These are matters which are relevant to all of us. We have all experienced bereavement in some way in our lives and we will all experience death. Our work centres on development, support and advocacy across all care settings. We receive no core funding from the State. Ours is an independent body which relies on the public for its initiatives. A key point is that high-quality end-of-life care - which includes palliative care - encompasses primary, secondary and tertiary care, all diagnoses, all ages, all care settings and involves most health care professionals. We believe that with proper planning, investment and commitment good end-of-life care can make a real difference to both the quality and cost of health care. CSO figures show almost 29,000 people died in Ireland last year and that at least ten people are directly affected by each death. This is a hugely important sector and we are concerned here with supporting over 290,000 people each year.

The budget for specialist palliative care services for this year is €78 million, down from €81 million in 2011. This €78 million is supposed to run a national service. In other words, it is supposed to be used to support services and staff in each of the nine hospices, to run day-care services and to support home-care teams, which comprise approximately 160 nurses throughout the country. By contrast, the budget for one region which comprises two and a half counties and in which three hospitals are located is €94 million. I am not suggesting that the funding for these hospitals should be cut, I am merely making the point that the Irish Hospice has a budget of €78 million which it must use to try to run a national service.

The specialist palliative care budget has been cut by 3% in each of the past two years. There have also been further indirect cuts as the costs of annual increments or non-pay inflation were not met. As members will be aware, hospice services have always been obliged to rely on the loyalty of local communities. It has been very fortunate in retaining that loyalty. Budgets have traditionally been a combination of voluntary and statutory funding. The ratio of State to voluntary funding used to be approximately 85:15. Now it is closer to 75:25. Members of the public are very loyal to their local hospice groups but there is a real concern that any further erosion of an already small budget will destabilise what is a fragile and underdeveloped sector.

Specialist palliative care involves caring for people with life-limiting conditions who have complex needs. Many are referred to the hospice movement at the end-of-life stage. These individuals should receive priority consideration in accessing a high-quality service and should not be on a waiting list. The goal of specialist palliative care is for patients to have access to services no more than 48 hours after referral. This goal is becoming more and more difficult to achieve. This is obviously a result of the fact that many services are experiencing staff shortages and are affected by the public sector recruitment embargo. The concern in the specialist palliative care sector is that if there is a cut in budget for 2013, this will inevitably lead to longer waiting times for those seeking to access services and a heightened risk of further bed closures. An example in this regard is that Milford Care Centre in Limerick was obliged to place a temporary cap on the number of beds in use from 30 to 28 last year. A further cut would cause a major disruption to the provision of palliative care. As already stated, the sector is struggling to maintain high-quality services.

There are two facilities which were built with extra bed capacity. I refer to Marymount in Cork, which 20 additional beds, and St. Francis Hospice in Blanchardstown, with 24 additional beds. These beds are not being used because there is no funding available. There is a need for progress to be made on the development of a hospice for the south east in Waterford Regional Hospital and a satellite unit in Kerry. As members will know, local communities have contributed significantly to the costs of developing inpatient units in these locations.

We have a policies and strategies for specialist palliative care in Ireland. Some recommendations in the most recent report, Palliative Care Services - Five Year/Medium Term Development Framework, have been implemented. However, most have not. Palliative care in this country is traditionally recognised as being of a very high standard internationally. It would, therefore, be a tragedy to see much of the good work done in this regard being reversed.

The beauty of specialist palliative care is that those involved in it can care for people in their own homes. In addition, more people are facilitated in the context of dying at home. This is generally line with the wishes of patients. There are excellent home-care services in areas that could be termed "hospice poor", namely, those which do not have inpatient units. In such areas, however, patients do not have the choice of going to a hospice if their symptoms cannot be controlled at home. As a result, their only option is to receive care and die in an acute hospital. As everyone is aware, the latter is an expensive form of care. This is contrary to national policy. It is also contrary to the wishes of most patients, most of whom want to be cared for and to die at home.

The key message we wish to get across is that people at end-of-life stage should be given priority status within our health service and should be protected. In that context, there should be no further cuts to specialist palliative care. Making such cuts would be shortsighted and would give rise to problems for those at end-of-life stage. After all, we only have one opportunity to get this right. Those to whom I refer are our most vulnerable citizens and patients.

While €78 million goes into specialist palliative care - some planning is involved in the expenditure - international evidence shows that between 10% and 15% of health care budget is spent on care of people in their last year of life. Therefore, in Ireland that means that at least 1.3 billion of the health budget is spent on end of life care, which would be largely unplanned expenditure. There is a need for planning. Initiatives already under way need to be supported, embedded and mainstreamed.

Jerry Buttimer (Cork South Central, Fine Gael)
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Ms Lynch has had ten minutes.

Ms Caroline Lynch:

There are 1,400 children in Ireland with life-limiting conditions and about 350 children die every year. We have Government in this area. The Hospice Foundation has raised €2.5 million to implement Government policy. The various elements we have supported would be a consultant paediatrician with a special interest in palliative medicine. That person has been in place for one year. There should be eight out-reach nurses in the community, there are three. Some progress has been made. I acknowledge the contribution of members of the committee who have helped us. Last week four other posts were advertised.

The key messages are: protect the most vulnerable citizens who are at the end of their lives, therefore, spare the palliative care budget; roll out initiatives which will have an impact in terms of end of life care; and continue to support the families of children with life-limiting illnesses to care at home.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank Ms Lynch for an interesting presentation.

Billy Kelleher (Cork North Central, Fianna Fail)
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I welcome the delegates and acknowledge the work being done by the various advocacy groups. In times of financial constraints we are always looking at more efficient ways of trying to develop services and support those providing the services. In the whole area of mental health, as there are so many specialties within mental health and many agencies and organisations, State agencies and advocacy groups, is there centralisation of information and access to information on the part of those utilising the various services and supports? Do we actually know what is happening in the whole area of mental health, given that it is broadly based, and that many agencies deliver support? Is there a need for a more centralised information system and a more centralised system of the services available to people?

Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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I welcome the guests who are the last four of nine we will have heard this morning. I ask the Chairman, as it has been an important opportunity for each of the groups but also for each of us, if he proposes to act on the information provided? It should not only be about airing one's concerns and hopes it is what actions the committee might take. I do not want to be prescriptive but my view is that we should made a case, as a committee, to the Minister, on a number of the recommendations we have heard or else the exercise will not have a real purpose. That is what I would like to see happen. I will take them in reverse order.

I thank Ms Caroline Lynch. I have had the pleasure of meeting Ms Angela Edghill who brought me up to speed recently on the work of the Irish Hospice Foundation. I concur that there should be no further cuts in the budget and that the levels for 2012 be maintained. The budget is already down to €78 million from €81 million in 2011. I hope the committee will make a case for the budget. In a week when we are facing into the children's referendum on Saturday, I fully endorse one of the priority recommendations in regard to the appointment of the outstanding or remaining five children's out reach nurses. That would be hugely important and I fully endorse that case.

On the National Federation of Voluntary Bodies, I acknowledge the voluntary basis, the community basis, of the component parts of the organisation. I very much welcome the reaffirmation that parents not only have a strong role in governance over the various entities within the federation but their voice is an essential and valued perspective going forward. May we have a brief profile of the 650 school leavers accommodated within the current year? It is to the great credit of the organisation that it has been able to accommodate school leavers within the budgetary restraints that it has had to manage, recognising that it is not only a 15% cut in the past four years but, as rightly pointed out, when added to the cut of €3.7 million this year, plus PRSI, VAT and other increases, the real impact in 2012 is of the order of €44 million as against the €33 million suggested. I wish the organisation continued success in all its work and I hope this short opportunity today will bear fruit.

I ask Mental Health Reform not to drop the ball on mental health. I thank Dr. Shari McDaid for his presentation. I acknowledge his contribution to members in the past 24 hours, along with another interested colleague, on the whole area of mental health provision. I heard him say yesterday and again I note from his contribution today that he is working on the basis that the €35 million that was mysteriously found in the back pocket of the jeans worn by the Minister State, Deputy Kathleen Lynch was somehow expended. I have used this imagery previously and I will surely be in trouble with Cork Deputies if not with the Minister of State herself. Dr. Shari McDaid is working on the basis that this might be applied for the current year but I believe the case for its employment in the current year is almost hopeless, that we have lost it. Given the overall decrease of 1% in funding for mental health provision in the current year, the situation is grave as I do not see that €35 million being put back into use in the current year. While we would hope it will be in play for 2013 and as early as possible, will Dr. McDaid elaborate on that issue? He is hoping to have €35 million now and another to follow in 2013. I wish that were so but it is important that is emphasised.

To Ms Maria Corbett of the Children's Right Alliance I say well done on all its work. I hope we are looking at happy days post the referendum on Saturday next. Given the stark facts she shared with us, almost one-fifth of all children in Ireland were living in households with an income below the poverty line in 2010. That is a serious matter. No matter what is achieved on Saturday there is a huge body of work to be done in order to provide for the rights of children as I understand it. I concur with her that we want to see the UNCRC incorporated into Irish domestic law and that it is not only that children's best interests will be taken into account when the State is taking cases on custody, access and guardianship but also it has a case to answer for its failure to provide for the needs of children in education, health and all the other areas.

Catherine Byrne (Dublin South Central, Fine Gael)
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I wish to raise a few issues around the National Federation of Voluntary Bodies. I have read its report. In regard to Appendix 1, the campaign strategy questionnaire, are there any facts and figures showing a reduction in family supports, home visits and so on which could be added to the document for the future?

I shall move on to the Irish Hospice Foundation.

There is always great joy at the birth of a child in hospital, but to have to go to a hospital because that child is dying or because an older person is dying is a very sad occasion. My extended family has used the services of the hospice on more than one occasion. In the context of the last few days of people's lives, it is important to say that general practitioners do an exceptional job. Many of them go way beyond the call of duty, and that is often overlooked. In my family's case, our local GP was very much involved. I have nothing more to say about hospices except that they are marvellous. They seek to ensure that people depart this world in comfort and with proper care. Any reduction in the services of the hospices should be opposed.

Ms Corbett from the Children's Rights Alliance spoke about the new children's support, which I welcome. However, with 224,000 children still living in poverty, which is in line with 2010, one has to wonder what happened in the past 15 years when the country had so much money. That is the main issue in terms of what Ms Corbett said. It is shocking that we still have such high numbers of children living in poverty, having gone through 15 years of enormous prosperity.

Whatever about general nursing being a vocation, those who choose to go into mental health nursing are unique individuals. I support the idea of providing mental health services within communities. The people of my parish are very lucky in that their new primary care centre also provides mental health services, which has had an enormous impact on people I know well. I was shocked to discover, having spoken to family, friends and neighbours recently, that six people they knew had taken their lives in the past week alone. The stories are all different and feature people from a wide variety of backgrounds, but they have one thing in common - depression. Apart from all the young people who are committing suicide, there are quite a number in their 30s and 40s who are completely shattered by depression because of their economic circumstances and the difficulties of raising children and keeping a roof over their heads. This problem has mushroomed and is almost completely out of control now. I find it difficult, as a public representative, to give any comfort to people who have lost a loved one through suicide, particularly as a result of depression or mental health difficulties. It is an issue the Government must take seriously, especially with regard to young people and those in their 30s and 40s who are caught in such a bind that they are ending their lives when they should only be starting out. I heard a very sad story the other day of a young woman with a seven week old baby who came home to find her husband hanging in the hall. He could not cope with the pressure of their huge mortgage. It is a sad reflection on us as a society that this is happening. I urge Ministers to take this matter more seriously.

Robert Dowds (Dublin Mid West, Labour)
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I welcome the delegations and apologise for my late arrival. I was here earlier but had to leave to attend to other business.

All of us who are Government Deputies have the difficult job of arriving at a budget which will not please anyone but which we need to ensure is as fair as possible, and that is important. In that regard, I ask the Chair if there is any way in which we can influence the Minister in terms of how he handles his budget. While I would like our adjustments to be done as much through taxation as possible, it would be totally unrealistic to suggest there will be no cuts to services. Such cuts will mainly affect the three big spending Departments, namely, Health, Social Protection and Education. We must try to implement cuts in a way that has the least negative impact. I do not know if the Minister is willing to talk to this committee between now and the budget.

Jerry Buttimer (Cork South Central, Fine Gael)
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The Minister will be before us on 20 November. One would hope the Ministers from the three Departments to which the Deputy referred will appear before us in advance of the budget, as well as representatives from the HSE.

Robert Dowds (Dublin Mid West, Labour)
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I thank the Chairman for that information.

Regina Doherty (Meath East, Fine Gael)
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I thank the delegations for coming in today. I have a number of questions but before I pose them I wish to pay particular tribute to Ms Corbett and her team for their sterling work in advocating a "Yes" vote in the forthcoming referendum.

I ask Dr. McDaid, based on the exceptionally touching and moving interview with Ms Una Butler last Friday, to comment on her proposition that families should be involved and included in any mental health therapy or response when family members present to the medical profession seeking help.

We consistently hear the country is bankrupt. Indeed, the Minister, Deputy Ruairí Quinn, says it every second week. However, none of us, in this committee or in the Houses, is socially bankrupt. Every single one of us has a heart and, with regard to the agencies represented at this meeting, I assure them that we will try to represent their views as best we can.

Do the representatives have any idea how they will resolve the issue of the €16 million deficit, given that they expect they will face further cuts in December's budget? Have any of the bodies represented been offered changes to their service level agreements with the HSE? If so, are there any difficulties arising from those new agreements? In the particular example of St. Michael's House, it has been argued that funding has gone in one direction while services have gone in another. In that context, what suffered? Has there, for example, been a massive reduction in staff-to-client ratios? In an earlier session I asked representatives of the Disability Federation of Ireland a question which they told me the National Federation of Voluntary Bodies would be best placed to answer. I have anecdotal evidence that the services on offer by the HSE to special schools for children and young adults with intellectual and physical disabilities are being withdrawn. I ask the delegates to comment and tell me if it is true.

Colm Burke (Fine Gael)
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I thank the Chair and apologise for missing the presentations, although I have read them and found them very comprehensive. I know we are facing into very difficult times financially, but I wish to move away slightly from that issue. The Chairman and I attended a meeting with a voluntary organisation recently to discuss the upcoming budget. Approximately 85% of the budget of the organisation in question was tied up by the Croke Park agreement. Therefore, if it suffers any reduction, the remaining 15% of its budget will be affected. This is an enormous problem being faced by many organisations today and there is no easy answer in terms of how we deal with it.

At a meeting yesterday with various broadcasters, the issue of negativity in the media, which seems to be a 24-7 phenomenon and which is having a detrimental impact on mental health, was discussed.

One person at the meeting, possibly Deputy Michelle Mulherin, referred to the fact that the general practitioner in her local area is now advising anyone suffering from depression to turn off the radio for five or six weeks because of the level of negativity. I realise the detailed submissions of the deputations are important and this is moving somewhat away from the topic but this is a time when voluntary organisations are making a significant contribution. This small number of people are making a valuable contribution and there is a need for more people to become involved at community level and across the board to mitigate the negativity. I realise some local radio stations are doing good work, trying to help people get back to work and promoting various initiatives at community level. Is there more we can do? Could we use the media to highlight the positive things taking place here rather than the whole focus being on negativity, which is adding to the air of depression everywhere in rural and urban areas. This is especially relevant from a mental health point of view. More and more people are having to avail of services and supports while at the same time the budgets in these areas are being cut. This issue surfaced yesterday at the meeting. It is relevant and we all need to work on it. We are not in this alone. This is the job of every organisation and Department and everyone involved in politics. It is also a job for everyone in the media. I am unsure whether we have engaged with the media on the issue.

Jerry Buttimer (Cork South Central, Fine Gael)
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I will ask our witnesses to reply. First up is Ms Corbett. I am conscious of the time. We must be finished by 12.45 p.m. because there is another meeting.

Ms Maria Corbett:

I will try to be as quick as I can. I thank the Deputies for the kind words expressed about the Children's Rights Alliance. They are much appreciated. I was struck by the comments of the other presenters and the Deputies and Senators with regard to how interconnected everything is. I am mindful that while I am referring to children we need to consider the impact of the cuts. We have discussed the budget in a broad sense. The effects are acute and not only cuts in child income supports but in the areas of education, mental health, home help and everything else. We should keep in mind the cumulative effect of all of this. Deputy Regina Doherty noted the importance of ensuring that we are not socially bankrupt. There is a sense in which we need to get out of our silos and examine what we are doing to society and the impact of the cuts on society.

I imagine the child benefit payment will be discussed on the airwaves in the coming weeks. I emphasise the importance of the payment, which goes into virtually every household where there are children, because it is of its nature a guaranteed universal payment regardless of whether one is working. There is a great deal of uncertainty in the lives of many families with regard to money coming in and going out. At least it is a guaranteed payment and I am keen to put its importance on the table.

We have spoken about the large number of children in poverty in Ireland. We should not ignore that the make-up of that large number, one fifth of children, is rather varied. Within that group there are several vulnerable groups. In particular I have in mind the children of lone parent families and the children of asylum seeker families living in the direct provision system and the particular additional difficulties these groups face. There are issues relating to families going through the homeless services as well. When we discuss the matter we should not be too general or lose the detail because if we are to address child poverty and take it on we should think holistically about how we do it.

When we are discussing making cuts and savings we should bear in mind the lifelong impact of being a child who grows up in consistent poverty. It is very difficult to come back from there. It is good investment to invest in children during this recessionary time and to ensure that children have a right to grow up free from poverty.

Dr. Shari McDaid:

I am conscious of the time. There were several questions on mental health and I will try to answer them as quickly as I can. Deputy Kelleher asked about the need for more information on all the activity in the mental health and associated areas. The Mental Health Commission is no longer reporting community mental health team staffing levels, although it used to do so. The HSE does not report this information either. In 2011 the Department of Health advised the incoming Minister for Health that efficiencies could be generated in the public mental health services through the development of a national mental health information system, as recommended in the document A Vision for Change. There has been no movement in this area. We have good information about child and adolescent mental health services and this is being reported annually. However, we have no equivalent comprehensive information about adult mental health services. We are calling for a modest investment in next year's budget to try to get at handle on what is happening in mental health services. In a wider sense the National Office for Suicide Prevention reports annually on the range of voluntary sector initiatives it supports in the area of suicide prevention.

Deputy Ó Caoláin rightly pointed out that we continue to be optimistic about the €35 million in this year's budget. We do not expect that €35 million will be spent this year but we remain hopeful for the promised staff to be appointed before the end of the year. We are calling for these staff to be appointed and for a commitment from the Minister of State at the Department of Health, Deputy Lynch, for a further tranche of money next year to cover additional staff, especially for the forensic services, services for intellectual disability and services for older people. By the end of this year we hope the staff will be in place as promised this year and that the additional staff promised for next year will be put in place as well.

I thank Deputy Byrne for her support on the issue of mental health generally. I am sorry to hear about the particular occasions of suicide that occurred of which she has become aware. We know that people with a diagnosis of a mental health difficulty are at a higher risk of taking their own life. Certainly, there is some link with depression. We know that the risk is very high in the first year when a person is diagnosed and begins treatment. The question of mental health staff being put under pressure and therefore being unable to provide the level of follow-up that would be considered best practice is a particular concern in terms of the potential impact on the risk of people taking their own life.

Deputy Regina Doherty raised the tragic case of Una Butler. She in turn has highlighted other cases where family members, including children, have lost their lives at the hand of another family member. We agree that families should be involved as much as possible in an individual's mental health case, subject to the permission of the individual concerned. We consider this to be good practice and it has been identified as good practice by the Mental Health Commission as part of its guidance and quality framework on the delivery of mental health services. We believe it is important that metal health services staff fully understand their obligations under child protection legislation and guidelines and that there may be a need for further education of mental health staff on their statutory and other obligations in respect of child protection.

Senator Colm Burke raised a broader issue on the role everyone can play in supporting positive mental health in Ireland. His comments call to mind a story that a person told me about her personal recovery from a mental health difficulty. The person said that one of the most important people to provide support to her in her mental health recovery was the local newsagent. Every week when she went in to the local newsagent store to pick up a newspaper or bottle of milk, the newsagent asked how she was and whether she wanted a cup of coffee. She said that person played a key role in her recovery. I fully agree that everyone has the potential to make a notable impact on positive mental health.

Mr. Brian O'Donnell:

I will deal with Deputy Catherine Byrne's question about facts and figures on service reductions. In my submission, I said that in spite of significant funding reductions we have managed to maintain front-line services to the best of our ability. Most of our organisations are parents' and friends' associations, so one can imagine that they look at every expense before they go to front-line services. Up to now, we have been able to manage that. What has suffered is the quality of the service. We are seriously concerned about that. For 2013, all of the big ticket efficiency issues have been implemented and we are now looking at the front line for the first time. That is a source of huge distress to us. We have outlined what we are contemplating in the event of further service reductions.

Deputy Regina Doherty asked a number of questions. I will deal with two of them. At the start of the year when the budgets are announced, we will engage in a service level agreement process with the Health Service Executive. A service level agreement is, essentially, a contract. It is a quantum of service for an amount of money. Of course, voluntary organisations are reluctant to reduce the quantum of service and that feeds into the deficit. We try to maintain existing services, even in the face of funding cuts. Up to now, and this relates to my answer to Deputy Byrne, we have managed as well as we can to maintain services, but service level arrangements for 2013 will be far more difficult because we will be looking at service reductions in the event of further cuts. We deal with the HSE as colleagues. We do not see them as the big bad wolf. They are in a very difficult situation themselves. However, they are acknowledging that for the first time service reduction is something that will have to be contemplated.

I included St. Michael's House in the pack because, although it is just one member organisation all our organisations are suffering. I mentioned in my presentation that we have a perfect storm here, with the demographic going in one direction, finance and HR resources going in another and the gap between resources and demand on services ever widening. That challenge for voluntary organisations to maintain a balance is becoming increasingly difficult. The year 2013 brings us to the unfortunate place where we will have to contemplate service reductions so that we do not exacerbate that situation.

I will ask my colleague, Mr. Christy Lynch, to deal with the questions on deficits and HSE special schools.

Mr. Christy Lynch:

Deputy Ó Caoláin asked about school leavers. The vast majority are people with intellectual disabilities. Most of them are known to our agencies because we, typically, run special schools and respite services. Most of these families are aligned with our agencies in any event and have an expectation that their children will move into some form of adult support programme. This is the first year that no funding was available. For the last few years not enough funding was available, but sometimes a little can be stretched and something achieved. We responded, but our response relates to Deputy Regina Doherty's question as to why we have deficits. In sorting out one problem, we created another.

For example, this year students left school in June, not knowing what was going to happen in September. This was very cruel. We did not know what was going to happen, although we were working very closely with our colleagues in the HSE. One should not have to sit in front of a mother whose daughter is doubly incontinent, uses a wheelchair, has no speech, has significant medical problems and needs to be fed and dressed, and say to that mother, who looks after her daughter 24 hours a day and seven days a week all year round, that she is being put on a waiting list. We are parents' and friends' organisations. We know better than anyone the impact of these things on families. Yes, we responded but in doing so we created other problems.

More and more children with complex medical needs are coming through the school system. There is an increase in the level of autism, bringing high levels of challenging behaviour. We are forcing more people into services, typically day services, that are already overstretched and we are asking fewer staff to deal with more people and more complex people. Real issues are emerging with regard to our viability as companies, because of the deficit. There are also health and safety issues. How far can one stretch a piece of elastic before it snaps and something bad happens? None of us wants to see that.

I have a comment on Deputy Dowds's remarks. I heard the Minister for Health sum this up before last year's budget, when he addressed a group of parents in his constituency. He made the point that people with disabilities were always on the margins, even in the best of times. We agree with that. I was on the board of the National Disability Authority when we launched the national disability strategy with great fanfare in very good days. We needed that strategy because there was an acceptance that we came from a very low base. The Minister made the point that even in times of austerity there are groups in society who need particular protection. Having lost 15% of our budget, we feel, as my colleague has said, that we have done everything that could reasonably be expected to protect front-line services.

For the first time ever in my memory, the Government acknowledged that 1.7% of the 3.7% cut could come off the front line. This was because the HSE, and not the voluntary organisations, told the Government that all the low hanging fruit had been picked. Some of our problems go back to the 1980s, when we had similar austerity and we created huge waiting lists. We never got to the bottom of that, even in the so called good times.

We were asked what we will do. If there is another cut, many of us will go into next year carrying deficits. We are companies so we cannot sustain that. We will have to start taking apart front-line services that are essential to people. If there is another cut on top of that we will have to cut even more. Otherwise, organisations will follow the example of Cregg House, and it will not be the last, and go back to the HSE and say, "Here are the keys; we cannot do this anymore".

A task force is working on a national policy for the reconfiguration of supports to children with disabilities. It is called Progressing Disability Services for Children and Young People. In theory, I agree with what it is attempting to do, which is to bring equity and fairness into the system across the country. The policy is to attempt to pool all therapists, with teams dealing with the age groups 0 to 5 and 5 to 18 in geographical areas. My background is in occupational therapy. We have never had enough therapists in the system. Many therapists are linked to special schools and sometimes parents choose a special school in the hope that their child will get therapy. In the new scenario, all the therapists will be pooled. The moratorium on recruitment has meant we have been losing therapy posts in the last number of years, and we never had enough anyway. Butter that was very thinly spread will be spread much more thinly, and this will be dressed up as equity. Will special schools lose in this scenario? Yes, they will.

Ms Caroline Lynch:

I acknowledge the comments of members of the committee and their support for palliative care.

Deputy Catherine Byrne is right. Most of the care for people at end of life is delivered by the local GP. Specialist palliative care provides support for approximately 25% of deaths. The local GP is really important. A programme called primary palliative care is in place, run by the Irish Hospice Foundation and the Irish College of General Practitioners. It supports GPs, and particularly out-of-hours services. The Irish Hospice Foundation has also collaborated with Console. We have some information about supporting those who have been bereaved through suicide, which I will gladly share with the committee.

Jerry Buttimer (Cork South Central, Fine Gael)
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I thank the members of the voluntary groups, the Children's Rights Alliance, Mental Health Reform, the National Federation of Voluntary Bodies and the Irish Hospice Foundation for coming to talk to the committee.

John Crown (Independent)
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Chairman, may I have ten seconds to raise an item?

Jerry Buttimer (Cork South Central, Fine Gael)
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We can deal with it during the private session.

We will discuss Deputy Ó Caoláin's point as to where we go from here properly at our next meeting. It is important that we follow up on today's discussion.