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.
