Services for Children with Disabilities: Discussion with the Jack and Jill Children’s Foundation

I welcome Mr. Jonathan Irwin, the chief executive of the Jack and Jill Children's Foundation, along with Ms Carmel Doyle and Ms Mary Joe Guilfoyle. They are very welcome. By virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of the evidence they give to this committee. If they are directed by the committee to cease giving evidence in relation to a particular matter and they continue to so do, they are entitled thereafter only to a qualified privilege in respect of their evidence. Witnesses are directed that only evidence connected with the subject matter of these proceedings is to be given and they are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person, persons or entity by name or in such a way as to make him, her or it identifiable.

The witnesses' paper has been circulated to committee members. I believe they are going to take us through it. We are privileged to have them here today. We are conscious of the work the foundation is doing in a vital area. We would like to assist in any way we can. We will hear the witnesses' presentation first, after which we will go to the committee for questions and answers.

Mr. Jonathan Irwin

I thank all committee members, especially the Chairman, for asking us to come here today. I wish to explain what we have done over the past 14 years and how we save the State a fortune by having introduced home care to children in their own homes throughout Ireland.

While we need the committee's help very badly, we are not totally unaware that there is very little money in the State at the moment. We have had two very good meetings with the Minister for Health and Children, and the Minister of State, Deputy John Moloney. He explained to us very clearly that there is no more money, but that he has a budget of €1.6 billion which he feels has never been properly reviewed. He got Mr. Lawrence Crowley to lead a proper review of the budget because he feels there is fat and duplication within it.

My wife and I set up this foundation when we had the tragedy with little Jack back in 1996. There are good milestones and bad milestones in life, and one of my shock milestones occurred when we get to the route map of what we did with Jack when we returned from the maternity unit to our home in south Kildare, only 50 miles away. We were told in 1996 that in this rich country, there were absolutely no services available for little Jack and families like us when we left the hospital. We were told that Jack would mean us no harm, but could break up our marriage through stress, trauma and lack of sleep and would certainly ruin the childhood of his brothers and sisters Molly, Lilly and Fonsie. The only advice the doctor could give us was to pack his bag in three weeks, drive him up to Crumlin and get him admitted knowing that we were going to abandon him. This did not happen in Romania or China but in Ireland in 1996. It was horrifying.

Luckily enough, being an elderly father and having had 35 years in the horse industry, I was confident I could look back into my old industry and get the money to start the foundation. My wife and I swore that no other family would ever go through the valley we walked through with Jack over the 22 months of his life. There are many wonderful things in life, but there are some horrible things, and trying to nurse a little baby who is one the verge of death all the time is a bad valley. It is slippery and slimy, with serpents and bats everywhere, and there is no light.

We kept our promise to ourselves and we have never turned a child away. At the time we started in 1997, the State had no idea how many babies were coming into this situation. We did not know whether the figure was three, 300 or 3,000. Since then, we have looked after 1,300 children and we have 320 on our books at the moment. In that time, I have raised €30 million and the State has donated €4 million to us. In the first three or four years, we got nothing from the State. I am accompanied today by perhaps the most important person in my life outside of my family, namely, Ms Mary Joe Guilfoyle, who was in a senior position in Temple Street hospital when she was brave enough to join me back in 1997. She now has a further ten paediatric nurses on the road to support our children in every county in Ireland. Ms Carmel Doyle has been with me for two years. She is my communications director and advises me on how to get this vital message out to as many people as possible, such as to this joint committee today.

The Jack and Jill Children's Foundation provides early intervention home respite nationwide to children with brain damage. It equates to approximately 80 nursing hours per month, depending on the severity of the child's condition. Many of our children have taken their intensive care situation from a hospital to their own bedrooms. We have found that the children thrive, inasmuch as they can, within their own homes surrounded by their brothers, sisters, budgerigars and dogs. My children know little and will never catch, see or kick a ball. If they are like Jack, sadly and truly, they have very few senses. I also am accompanied today by several of the foundation's nurses. Even more importantly perhaps, I also am accompanied today by a number of my mothers whose babies either are still with us or who, sadly, have passed over. They are typical of what we do. Sadly, I suspect we cannot make the children well, in that they will never represent a school, county or nation. That said, we give them the gift of time. We give this to the parents and siblings in order that life can go back to being able to talk to one another, get some sleep, go to a match, visit a swimming pool or even go to a pantomime.

I refer to a vital report we commissioned from Trinity College earlier this year that I hope most members have had a chance to read and which showed many interesting things. First, our parents rate us as a five-star service and we are highly flexible. Members must understand that we look after children both in Shrewsbury Road and Ailesbury Road and in city centres. We cater for single mothers and people who are dysfunctional, with drug abuse and other terrible problems. We cater for people in the countryside who have little education and little family back-up. We have children from the Traveller community and among the new immigrant nations to this country who may have wicked problems, who obviously have no family back-up and probably do not have the language. All our teams must be sensitive and the team one sends to Shrewsbury Road will not be the same team that is sent to an encampment of Traveller people. We have managed to produce the flexibility that allows us to do so.

I stress that we may be unique in Ireland in that while many other agencies do terrific work for children, we do it nationwide and bring the care into children's own homes. Members will have seen the list we included in the information pack provided. On the whole, one is never more than 25 miles away from a Jack and Jill child. It is such a tragic thing. In a country of 4.5 million, the numbers are quite small but at present, 320 families are going through absolute torture and there is no back-up except for us. The Trinity College report also showed that we can provide the desired service in the home for just over €16,000 per year. Were those babies obliged to return to intensive care and to State care, it would cost the State approximately €150,000 for each baby. Therefore, members can see how the arrival of the Jack and Jill Children's Foundation has made a great difference to the State coffers, which I suppose no one really noticed until the past two years.

Like so many other charities, we are in a dire situation at present. I had built up a nice nest egg that carried our overrun last year and that will carry this year's overrun. That said, members must understand that the costs of looking after our babies have risen by approximately 40%. This has nothing to do with wages or anything like that but is about the excellence of medicine. Such medicine is allowing babies to live who previously may have not survived, such as premature babies of 21 or 22 weeks. It may be that their brain stems do not grow and they are in need of palliative care. Palliative babies cost us an awful lot of money, obviously much more than just a marginally bad baby. Moreover, like every other charity, we have witnessed a dramatic fall in public subscriptions. While this has been averaging at approximately 26%, figures from the most recent two months, August and September, reveal the decline is approaching 50%. Although we have covered our shortfalls up to now, unless we get help we will not have any reserves left. I emphasise that we are scheduled to have a meeting with the Minister of State at the Department of Health and Children, Deputy Moloney, on 30 September. Last May, he told us that the September meeting would not be just another meeting but would be the time when he and the State would ascertain exactly what they could do.

We require €225,000 per month to run our services to the 320 babies for whom we cater at present and I need €112,500 from the State. When the Minister for Health and Children, Deputy Harney, first took up her position, she spoke very strongly on our behalf. She always has stated that she hoped the State would be able to share our burden on a 50:50 basis, having come on board after four years. The reality is that its contribution now has sunk to below 20%. Moreover, after the appearance of the TCD report, which stated how fantastic, commercially viable and economical were our services, we received a round robin letter from the HSE telling us to save money as they needed to cut our allocation by a further 6%. We do not seem to get the rewards, but there we are. While I acknowledge that we are looking for money, in the overall context it is €750,000 on top of the €500,000 we receive at present. I also make the point that the average grant to charities in Ireland is 69% and that some charities receive up to 100%. The funding for the Jack and Jill Children's Foundation is somewhere below 20%, which to me constitutes a hell of a big difference and which probably speaks volumes about my ability to solve things. Were this cut to take effect, which will take place unless the Minister of State can help us at the end of this month, we would be obliged to cut by approximately 25% to 30% for next year. This will mean reducing our help to the parents by approximately 24 hours per month, which will be brutal, and I really do not wish to be obliged to do that.

We do other things and learn all the time. Members must understand that at the outset, I knew nothing about charity or health but we learn all the time and bereavement now forms part of our work. We found that the mothers concerned are very distressed emotionally because they come out of the workforce, money suddenly is desperately tight because there no longer are two salaries coming in and no friends call in. What does one say to one's best friend whose baby may have an epileptic fit in front of one? Does one say, "Doesn't he look lovely and here is the blue teddy bear"? As one probably does not, such mothers are lonely and, consequently, we work as hard as we can to get them back into business. As Ms Guilfoyle will confirm, our nurses reckon that were we obliged to stop, a highly conservative estimate is that at least 100 of our 320 babies would be obliged to return to intensive care tomorrow morning. Were that to happen, it would cost the State approximately €15 million compared with what we are seeking today. I suggest that the investment we seek is not enormous but is vital to the well-being of so many families in every parish in Ireland.

I refer to another problem we have inherited. At the outset, I started the service for children from birth to four years because I was assured that the State then would take over care of the babies. This did not happen. It was going to happen through the health service but has not happened. We have made the case to both the Minister, Deputy Harney, and the Minister of State, Deputy Moloney, that we would like to take over care of the babies until they are six. This is because, as members may recall, in 1996 and 1997 the HSE was very ill at ease in respect of paediatric disabilities affecting young children of this age and I was obliged to face the fact that I could only get those services were I to abandon my child. The position has improved but it is an area with which the HSE remains very ill at ease. At the May meeting, we asked to be allowed take it on for the four to six age group. The officer from the HSE who was present reassured the Minister of State that the executive had plans in place and would be able to look after them.

We have 81 families whose babies have graduated and who are more than four years old. We cannot simply drop these families and those children into a void. In the period between May and the present, none of these families has had a call from the HSE, despite the promises. Therefore we still have these 81 children, who should not be our responsibility, on our books. This is costing the Jack and Jill Children's Foundation €250,000 in addition to my budgets for those children aged up to four. I do not mind if I can protect my children. I was shocked to learn how badly funded are many schools around the country. I heard about a device called the interactive white board, which is standard in as many as 95% of English schools compared to 14% here. These devices cost between €3,000 and €4,000 each. I did a deal with a manufacturer with the result that we have been able to run a campaign in schools over the past scholastic year whereby Jack and Jill will donate an interactive white board if children can harvest 500 mobile telephones. I am pleased to say that the children harvested 250,000 mobile telephones for us. I remind members that 250 telephones allow me to look after one child for one month. In return, Jack and Jill donated over 400 white boards which would have cost the Department of Education and Skills €1.2 million at retail value. It is extraordinary for a tiny charity to say "thank you" in this way to the children of Ireland on behalf of our little people who cannot say or see anything. As these white boards will last a long time, they will benefit more than just the children who are now in school. Tomorrow I will begin to conduct interviews with this year's co-ordinator with a view to expanding the campaign so that we can continue to produce white boards and sports equipment for Irish schools.

As members can imagine, I badly need their help. In regard to the balance of €30 million from the private sector as opposed to only €4 million from the State, these children are primarily the State's responsibility. Nobody did anything wrong here. Nobody took drugs, fell off a motorbike, got drunk or was stabbed. None of these families meant any harm and the children certainly did not. I am now 69 years old and I will keep dreaming up ideas but at this stage I need more help from members as representatives of the State. I thank the Chairman for allowing me the time to address the committee.

I thank Mr. Irwin. It is difficult to follow that.

I am sure I speak for everybody when I welcome the witnesses. I admire the work they do because every parent's nightmare is to have a child become chronically or terminally ill. There is no doubt that whatever time is left should be spent at home because home is best. I know it also offers value for money because I have witnessed in Crumlin the effect of long-term admissions for children with multiple complex problems who could, with support, be in the community. Unfortunately, the support is not available, notwithstanding the great work being done by Jack and Jill.

I support Mr. Irwin's call for increased funding. I will ask my question in a positive way because I am sure he will have a positive answer. What percentage of the foundation's expenses goes on administration and non-nursing staff?

Mr. Jonathan Irwin

I think it is just under 10%. We are located in a smart address called Johnstown Manor. That sounds like I am restoring another Georgian house but in fact we occupy three rooms above a Centra supermarket. The staff comprise myself, one full-time girl, five part-time girls and, most importantly, 11 pediatric nurses on the road.

Mr. Irwin has already answered all the questions we need to ask. He has made it clear that if the funding is discontinued, those infants will end up back in hospital at a cost to the HSE and the State of multiples of what it costs Jack and Jill to deliver its service. I commend the foundation on its work and offer it my full support.

Mr. Irwin is probably the only man I have heard speak so openly and passionately about the care of young children. He has done a service both to his organisation and to men in general. He is also the only person to declare he desperately needs the committee's help. Usually people use phrases such as "we would very much appreciate anything the committee can do for us". I take it the situation is indeed desperate, therefore. As Deputy Reilly noted, the nightmare for any parent is to have a child who will not survive. During the short time left, it is important parents are given the space to enjoy their children's lives.

We met two deputations from the hospice movement over the past two years and there was cross-party agreement on the extraordinary job it does at a time when people desperately need support. I do not understand why we do not adequately fund the hospice movement and I definitely do not understand why Jack and Jill is not better funded. It provides a similarly vital service to a uniquely delicate group. Mr. Irwin can rest assured that all members will support his meeting with the Minister in regard to funding.

I hope his presentation will be televised because it expresses clearly what the foundation does and will send out a message on why it needs to be funded. The response would be enormous were it to be televised. I am very impressed.

Mr. Jonathan Irwin

Having had the privilege of being father to Jack for 22 months, I can attest, and every parent will agree, that these babies take over a part of our hearts.

I welcome Mr. Irwin and his colleagues from the Jack and Jill Children's Foundation. I have corresponded extensively with them over the past couple of years and I am delighted they have the opportunity to come before this committee. It is every parent's worst nightmare to think his or her beautiful baby will be seriously ill or will not have the chances given to other children. The families who have had the support of the foundation were lucky because they had something very special. Not only did they have the gift of time, they also had the foundation's love and support. I know people who have availed of the foundation's services and they speak highly of how it helped them to cope during difficult periods in their lives.

Mr. Irwin quite rightly outlined the difference between being in a hospital and at home. A hospital is the last place anybody should be. It is vital for children to be at home with their siblings and family during whatever little time is left to them on this earth.

The foundation provides tremendous value for money. I have no problem speaking with the Minister, Deputy Harney, and the Minister for Health, Deputy Moloney, in advance of Mr. Irwin's meeting with them on 30 September.

One of the activities I entered into with my students when I was teaching in schools was to collect mobile telephones. The number of telephones one can find when one begins the spring clean is amazing. It is a wonderful initiative not only in terms of raising funds, but also to allow people to get rid of clutter in their homes. It also raises awareness among schoolchildren of what these mobile telephones could do for people who are less fortunate.

Has Mr. Irwin met the HSE recently and has the engagement been negative or positive? We are in unprecedented economic times and the foundation is in a position to provide services that can help the HSE to save money. People would not take up beds in hospital that they do not need to take up. Surely there must be some merit in this. The HSE must seriously consider what the foundation is doing.

The witnesses mentioned that 81 families have children who have reached the magical age of four and are now supposed to be under the aegis of the HSE. Am I right in understanding that their families have not had any phone calls from the HSE? I find that a dreadful story. Families are trying to cope with very difficult situations. Their children have reached the age of four and they are waiting for a call from the HSE. I would like the witnesses to give some further comment on that.

I thank the representatives of the Jack and Jill Children's Foundation for attending. They are passionate about and believe in what they do, which is of major benefit to the sickest children in the country.

I thank the witnesses for their presentation. I am familiar with the work they do, which is impressive. Their presentation brought us to the heart of the political decision making that will be necessary in the run-up to the budget. We will have to decide on our priorities. My view, which is probably shared by many if not most members of this committee, is that if we cannot put children with special needs at the centre of our decision-making and prioritise them in budgetary decisions, we are going nowhere as a society. That is the challenge the witnesses have thrown down today. Will we meet it? What criteria will be used for the budgetary decisions, which will be very tough? We will have to try, to the best of our ability, to support the kind of work the witnesses are doing. I am sure the committee will support them. These are tough decisions. As a political body, we will have to work out clearly what the criteria are, what really matters and what can be supported and funded. The witnesses have made an enormous effort themselves at a voluntary level; the way in which they have gone about their work is very impressive. This is the kind of voluntary effort that should be supported. The State should add something on to what they are doing. I hope that will prove to be the case after their meeting with the Minister of State.

Like other speakers, I welcome the witnesses. The Jack and Jill Children's Foundation is an extraordinary charitable organisation. The witnesses have done extraordinary work in setting up and bringing the foundation to where it is and they deserve much credit for that. While the number of children the foundation is dealing with in Donegal is currently quite low, I am very much aware of its work. My closest buddy had a child for whom the foundation cared for two years until his death. Sadly, he passed away a little over a year ago. For that reason alone, the foundation is a charity that is close to my heart.

The witnesses' message has been clear and concise. I am sure I speak for the rest of my colleagues on this side of the table when I say I will speak with the Minister of State, Deputy Moloney, and the Minister for Health and Children, Deputy Harney, before 30 September, and I hope for a successful outcome for the foundation.

I will be brief because Deputy Kathleen Lynch has already spoken on behalf of the Labour Party. We completely support the Jack and Jill Children's Foundation in trying to obtain more money from the Department. As Senator Fitzgerald said, it is a matter of adjusting budgets. Mr. Irwin said the Minister of State, Deputy Moloney, feels there may be some fat; I hope there is.

On a practical note, does the foundation still collect old phones and printer cartridges? I do not know what happens to our spare things here. What happens to printer cartridges and mobile phones in the Houses of the Oireachtas?

That is something we should take up with the administration committee.

It is something practical that we should take up. I realise that what the witnesses really want is for us to back them in obtaining State funding; this was just something that struck me while they were speaking.

Because of the cost-effectiveness and human effectiveness of keeping a little baby at home with his or her family rather than in hospital, what the foundation is doing makes sense. I back it 100%.

I will be brief. I thank the witnesses for coming before the committee. Every now and then we see people who touch our hearts and grip us so hard we feel we cannot breathe. Mr. Irwin had that kind of effect on us. Every one of us will do his or her utmost to try to change the situation for the foundation.

The witnesses mentioned comparative costs of €1.3 million and €14.73 million for 100 babies who return to intensive care. This is such a major cost that one cannot even think about it. I imagine the financial and emotional upset it must cause the families, and the children themselves, when they are taken from their homes and put in hospital.

I loved Mr. Irwin's use of words such as "the little ones" and "my nurses". When I heard the latter, I thought "This is such a cosy, lovely little group," which is amazing when one thinks of the work the foundation does. Could we bring this up publicly at our next meeting with the Minister, Deputy Harney, and try to generate some kind of publicity for it? We should let a wider audience see the kind of work the foundation does on a small budget. If it is all right with the Chairman, maybe we could do something like that.

My questions are the same as those of Deputy Conlon and others, so I will wait for a reply.

I do not want to repeat what everyone else has said. It is a long time since I have heard such a strong personal plea for funding at the committee. This honest and open presentation, which told us the facts as they are, hit us all very strongly. Like everyone else, I would like to be associated with supporting the committee in every way possible. When we speak to our Ministers in a personal capacity, we will get that message back to them. I hope that when the members of the foundation meet with the Minister of State, Deputy Moloney, there will be some results, and the moneys they require will become available. It is a small amount of money. I have been looking at the figures over 26 counties; for my own county of Kilkenny, the figure is €53,000. We are under dire financial constraints at the moment due to the economic position, but we must get our priorities right. If there is anything I can do personally I will do so. Like every other member, I was very taken with the presentation and the plea that was made. We should support the foundation to the last. We must get our priorities right, and children in need should be the first priority of any Government or society.

I thank Mr. Irwin for an excellent presentation. We are very much aware of the good work the foundation does because we all know children in our constituencies who received the very best of service from it. I support the comments of my colleagues, and I will not go back over what they have said. However, there are a couple of issues that are worth raising. No matter how much funding is provided, it will never be sufficient to do everything we would like to do, so we must make the best use of the funding that is there. I recognise that the foundation gives excellent value for money; Senator Feeney has already mentioned that the State pays nine times more for care in its available premises. I ask that when the members of the foundation meet the Minister of State — I will talk to him myself before the meeting — they consider greater integration of services. In the area of disability services there are many good organisations, both State and voluntary, but there is not enough integration to ensure we obtain the best value from the money available. With the best will in the world, the amount of money we would like to spend is not available and never will be. Even in good times it was not available. It is important to see how the services can be integrated. From the figures provided by the delegation, two children in intensive care transferred to the community would release almost €300,000. I appreciate it is not simple, in terms of being done that way, but that would release enough funds to fill the deficit for the current year. It appears there are gaps in the disability services. The biggest gap I see is the need for early intervention to enable a proper diagnosis to be made in order that an ideal plan can be put in place for each individual child according to his or her needs. Mr. Irwin referred to early intervention. It is not just a question of voluntary organisations but the State organisations, between the Department of Education and Skills and the Department of Health and Children, the psychological services might well be looked at. The educational psychological service is different from the health one. A great many school children who come before the educational psychologist have a health requirement, such as deafness. There are opportunities within the State organisations and within the voluntary organisations to get a better return for the money that is being provided.

At the delegation's meeting with the Minister of State, Deputy John Moloney, it would be helpful if the delegation had some ideas on how it could expand the service to provide for children up to the age of six years and ensure it has sufficient funding and also what it could do to lessen the burden on some of the State services while giving better value for money.

I thank the chairman for the opportunity to sit in on the committee. I came in specifically to support the Jack and Jill Children's Foundation. Like my colleagues I thank and commend Mr. Jonathan Irwin, Ms Carmel Doyle and Ms Mary Joe Guilfoyle for their magnificent work and major contribution to the 1,200 families they have assisted and currently the 320 families. They have made the health argument very clearly. All Members of the Oireachtas should support the delegation. I am heartened by the response of all the Deputies and Senators from the different parties. It is important that the delegation has that support.

In regard to economic arguments, Mr. Irwin touched on the costs — the issue that hospital care is nine times more expensive than home care — and in regard to the health budget he mentioned at a meeting with the Minister of State, Deputy John Moloney, that there is a good deal of waste and that the money could be targeted on projects run by the delegation. In the current economic climate that is the road that should be taken to identify the solution.

It is clear from the report of the Comptroller and Auditor General that €43.8 million was wasted on sites around the country while the delegation is seeking €1.3 million. In regard to the meeting with the Minister of State, Deputy John Moloney, did the delegation get a clear indication that he is serious about his commitment and, if so, did he give a timescale for the commitment? In its submission, the delegation mentioned that its costs have increased by 40% while its donations have taken a hit of 25%. Outside of getting money from the State, taxpayers and lobbying groups such as ourselves what other means has the delegation to raise funds to plug the gap?

In regard to the figures for the Dublin area, I note the costs are €552,000 and that the delegation is serving 80 children. How is the money spent?

Senator Frances Fitzgerald touched on the debate in the current economic climate and the cuts and taking the so-called tough decisions. Members of the Oireachtas should take the tough decisions in the interests of children with disabilities and children with major health problems. That is the real toughness in the current economic climate and we should focus strongly on it. The impression is given in the media that cutting back on public services is an unpopular and touch decision. The reality is that cutting back on services for children, particularly children who are ill and children with intellectual disabilities, should never be an option in any democratic society. If tough decisions have to be made to pay for these services, we should not run away from the whole idea of increasing taxation to support those services. I will be in that camp when it comes to cuts versus extra taxation.

I thank and commend the delegation on its work. I will continue to lobby on its behalf. Ms Carmel Doyle has been lobbying me in recent weeks. Like my colleagues I will speak with the Minister of State, Deputy John Moloney, and lobby him as much as possible.

It is now back to the delegation if any of the team wishes to respond.

Ms Carmel Doyle

A number of questions have been asked. Just to confirm our costs are less than 10%. As members will see from the Trinity report our service is highly efficient and since launching that report on 2 February 2010 we have had two meetings with the HSE and have met the Minister, Deputy Mary Harney, and the Minister of State, Deputy John Moloney. One of the questions that came up was that the cost of our service is less than 10%. We are highly efficient, we do not waste any money. That is one of the biggest advantages of the Jack and Jill Children's Foundation.

On the sense of urgency and the whole question of the four to six year age group, we would love to look after that group. That was a recommendation in the Trinity report but we cannot look after that group until we make the zero to four age group more sustainable. We have a short-term funding need for which we are hoping to get support. I cannot emphasise enough the sense of urgency for this funding. We do not need to wake up on 1 January and have to inform the families of a 30% cut in the service. We cannot do that to them. We have a short-term funding need of €1.35 million and we need that money within the next few weeks. I do not think anybody should be under the illusion that is exaggerated in any way. Everybody is welcome to look at the books of the Jack and Jill Children's Foundation between now and the meeting with the Minister of State, Deputy John Moloney. We would love to look after the four to six year age group but we must get the €1.35 million to sustain our service. That is about the HSE meeting us half way, 50% is all we are looking for. Please meet us half way. I am very encouraged by what the committee members are saying and I hope that as a group and individually they will speak to the Minister of State, Deputy John Moloney, and the Minister, Deputy Mary Harney, about this need. We want to work in collaboration with the HSE and we have had some productive meetings with it. We have had Professor Charles Normand go through the detail of the Trinity report, bit by bit, with the HSE. It is a very simple formula to follow. Hospital care is nine times more expensive than home nursing care. The Jack and Jill Children's Foundation model is highly efficient but we have an immediate funding need — then we can speak about the four to six year age group.

Perhaps Ms Mary Joe Guilfoyle will speak about the nursing side in terms of what our families require and the co-operation we have going with the HSE.

Mr. Jonathan Irwin

And the palliative side of our business.

Ms Mary Joe Guilfoyle

We work in tandem with whatever services are out there for families. Our role is as liaison nurses. That means linking with any and all services that will give any support to these families. We do not duplicate services that are being provided but what we found in the majority of cases is that we are the only service. To bring it down to the here and now, I went to see a new family this morning, the referral having come to us last week. The baby is eight months old and has been in the system for eight months. The parents had never heard of domiciliary care allowance or any other entitlements. That mother is at home and she has not left the house other than for hospital appointments. She has a six year old child and a nine year old child. When those children heard that a nurse from the Jack and Jill Children's Foundation was coming — they were aware of the mobile phones campaign — they said, "Oh Mammy, does that mean we could get to the cinema?". That sums up for me what the Jack and Jill Children's Foundation can give and what we do every day for families.

It is the simple things like going to the cinema or allowing the parent to get a night's sleep to allow them function, do the homework and put the dinner on the table every day that are important. There is a great deal of fat to cream off in other areas but there is very little practical help on the ground for people like Jonathan and all the other families. There is nobody to come in and tell them to go to bed for a few hours, but we do that. We offer them somebody who is qualified and capable to look after their baby while they take a break.

That is happening in every county now, and that is the reason we welcome any advances from the Health Service Executive and the engagement in early intervention services. Our expertise lies in the provision of services for the early years. We know the importance of that. We see the benefit of making the physiotherapy services available early and the difference that makes to the quality of life for that child. If it makes a difference to the quality of life of that child it also affects the quality of life of the entire family. Our care has a ripple effect on the siblings as well because Mammy and Daddy have time to do the normal things we all take for granted. That mother has never been out shopping. She has not gone to the hairdresser's in eight months. Those are things we all take for granted. We must all get back to the reality of what makes a difference and a small amount of money in real terms can make a huge difference.

One of the things that enthralled me the first day I met Jonathan was his enthusiasm and his desire to do good, and it works. I could see it would work from day one. Fourteen years have passed since then and every day I go into work I still get that sense of satisfaction because I know that behind me in the Jack and Jill Children's Foundation I have the power and the money that will make a difference for the family I am about to visit. I want to be in a position to go out to the next family and not worry whether the Jack and Jill Children's Foundation has the money to do that.

Mr. Jonathan Irwin

Ms Guilfoyle almost made me cry. Something she did not mention is that, as the members are aware, there are 44 children's hospices in the United Kingdom. There is not one here. It seems to me that the services provided by Ms Guilfoyle and her ten colleagues are becoming the palliative service now. If things are difficult we might not have to have physical bricks and mortar hospices because the palliative services are beginning to come forward and, through my girls, are being brought into the homes. That is what is happening, which is good.

There were one or two questions——

Ms Mary Joe Guilfoyle

What has happened to the 81 families?

Mr. Jonathan Irwin

The 81 families are still on our books. I said earlier that those children will not disappear into a void, so to speak. I will not allow that. The parents are on the phone to me so often because they are desperate.

Deputy O'Hanlon put a very good question to me. I could not agree more with him about the lack of integration. We are unique in that nobody else does what we do. It is amazing to me that, like a broken down horse dealer, I had to start this service in 1997. Integration is very important. I have a feeling that we can help in this way. Ms Doyle spoke about taking over the children aged from four to six but what she did not mention is the terrifying amount of money we will save the State if we take on that. We will politely say to the HSE officers at the meeting with the Minister of State, Deputy John Moloney, that they are not at ease with this work and they should be brave enough to hand it over to us. We will need more money. For the children aged between four and six, who are separate from the nought to four age group, we will probably need another €2 million but it appears we can save the State €27 million. The HSE should be taken out of the area of home care for our children because there is not a national budget for paediatric home care and we are very often dependent on the good will of the local officer.

I was asked about the other plans we had in mind. It is all to do with waste. I got a call from a doctor in a hospital in Tralee who said he had a serious problem. As is the case with every other hospital in the country it was up to its neck in used crutches. As from the beginning of October, the Jack and Jill Children's Foundation will recycle all the zimmer frames and crutches in the country to our benefit but also to stop the HSE spending a fortune on waste companies which send in skips to take them away and do nothing with them.

The question as to whether we ever have enough money is a good one. Up to now we have always had enough money. We have done something, about which members may have heard, which I do not believe any other charity has ever done. The mobile phones campaign was such a success that a pal of mine who is on the board of Auckland Children's Hospital asked me if I would travel to New Zealand to see if we could help them. I stood on the podium with the chairman of the board and the new Prime Minister of New Zealand in February a year and a half ago, and in the first year they raised New Zealand $1 million to allow them keep their flying doctor service in operation.

Australia heard about that and we got into bed, so to speak, last year with the Sony Foundation on behalf of a charity called Can Teen, which is for young adults with cancer, to build units across Australia. As a result of this small Irish idea the Sony Foundation has already handed over a cheque for Australian $500,000 to Can Teen.

I mention that because I have done a deal with the Sony Foundation that every year they will pay the Jack and Jill Children's Foundation a franchise fee of 10%. I hope, therefore, that long after I am gone money will still be flowing in, as it was from America. We are also far down the line, so to speak, with the Muhammad Ali foundation in the United States to do the same throughout the states, and we have started already in Kentucky. That is where we hope to bring in money.

I suspect we could be here till 7 p.m. hearing about all these ideas.

If one were to start up a business I would not mind having Mr. Irwin on my side.

It has been a pleasure to hear Mr. Irwin's case. Senator Fitzgerald said he was challenging us and if we are worth our salt we must be able to respond. Individually and collectively we will now approach both Ministers, and I will personally take up the issue directly with Mr. Cathal Magee, the new chief executive officer of the HSE whom I will meet on Thursday. On behalf of the committee I extend an invitation to the representatives to come back before the committee, if it is necessary, in the aftermath of their meeting with the Minister of State, Deputy Moloney. We are aware that the Minister of State is committed to this project but if the representatives feel the need to come before us our door is open and we will be very happy to meet them.

I am sorry, we must conclude this part of the meeting as another group is waiting. I apologise to the members of the other group who are about to make a presentation. We will bring matters to a conclusion at this point. I thank the representatives and we wish them good luck.

Mr. Jonathan Irwin

I thank all the members very much.

Sitting suspended at 4.38 p.m. and resumed at 4.40 p.m.