Gerry Adams (Louth, Sinn Fein) | Oireachtas source

Billy Cairns is from Dundalk. He is just four years old and like all children of his age he is friendly and smart. He is also hugely courageous and profoundly deaf. I mention Billy because his was the first cochlear implant case I raised here. I could also talk about Alex, Anna, Ben, Ellie, Grace, Fionn or many others. Billy was one of several children whose parents asked to meet me in January and they are an amazing group of mothers and fathers. They are committed, dedicated, imaginative, unstinting and tireless in their determination to get the very best for their children. They will travel anywhere, meet anyone, and present a compelling account of their experience and of their hopes and demands for their páistí. Their web site is clever and informative. I logged on again last night and listened to Emeli Sandé sing her evocative "Read all about it" in which there is the line, "You've spent a life time stuck in silence" and watched the video as children and parents tell their story. All of us in the Dáil, from all parties and none, who have met the children and their parents have been moved and motivated by their courage and example.

I commend the Happy New Ear campaign and I welcome the parents and some of the children to the Gallery today. I first met the parents and some of the children in my office in Dundalk in February. Later a group of parents came to the Dáil to make a presentation to a cross-party group of Deputies. Since then they have lobbied politicians, doctors, HSE officials, the Joint Oireachtas Committee on Health and Children and the Minister for Health on the issue. This is an issue of fundamental rights. All of these children were born with profound hearing loss, but medical science has provided a means by which many of them can hear. We have the cure for many of these children. It means providing a surgically implanted electronic device, called a cochlear implant, which provides a sense of sound to a person who is profoundly deaf. The operation is difficult, and especially so for children who may have to undergo several procedures requiring a general anaesthetic.

In this State the health policy for the past 17 years has dictated that a patient receive only one cochlear implant. This means the children who go through the operation have hearing in only one ear. As one of the mothers said to me a long time ago, it is like giving a blind child sight in only one eye. This is despite the fact that international best practice dictates children receive bilateral implants. In the North, in England and throughout the European Union a child will receive two implants. This is also what the HSE now recommends. Ag an pointe seo, tá sé measta go bhfuil timpeall 200 páisti a d'fhéadfadh buntáiste a bhaint as na hionchlannáin cochla dáthaobhach. Tá an cóir leighis is fearr tuillte ag na páisti seo.

It is a fact that children who go through life with hearing in only one ear face serious hurdles. There are better educational outcomes if a child can hear with both ears. It allows them to determine where sounds come from, which is vital in a noisy environment such as the Dáil Chamber, a playground, a football or hurling pitch, a shopping centre or a crèche. They have a sense of confidence if they can hear the voice of their mother or father. It also gives these children the ability to communicate with others and make friends with other children and not be socially isolated.

The overall amount of additional money required to provide this service is approximately €12.8 million per year. As we have discussed, all of this would not have to be provided upfront. As capacity to perform the operations builds the funding can be provided incrementally. It is not a prohibitive amount. It is the children's right but it also makes economic sense for citizens to live independent lives. The implementation of minimal international best practice would have a huge lifelong positive impact on the lives of these children and their families. Dá gcuirfeá an dea-chleachtas idirnáisiúnta seo i bhfeidhm, bheadh impleachtaí thar a bheith dearfach aige ar saol na bpáistí seo.

Young Billy, who I mentioned at the beginning of these remarks, and whose mother Deanna is with us today in the Gallery, went through an operation last April to replace his faulty implant. Before the operation I raised his case on Leaders' Questions. I sent word to the Taoiseach quietly in advance so he would not be bounced on this important issue. I gave him a note on it. He was sympathetic and promised to raise the cochlear implant issue with the Minister for Health, Deputy James Reilly. I also suggested that when Billy was getting his faulty implant fixed a second implant could be fitted. Again, the Taoiseach was sympathetic. I spoke to the Taoiseach again at least twice privately and in detail. I also spoke to the Minister, Deputy Reilly. I wrote to the two of them and briefed them fully on the general issue of these profoundly deaf children's needs and their right to have bilateral implants. I followed this up in a persistent and consistent but low-key way.

Despite the sympathy and positive responses, Billy went on to have his operation but no second implant. This was an opportunity missed. The operation would have cost €18,000 and this would have been taxpayers' money well spent, but it was refused by the Government. The Government had plenty of notice on the issue. With respect to the Minister of State, Deputy Lynch, I cannot help but compare the Government's stinginess in Billy's case with its generosity with public moneys when it comes to giving a digout to those in financial and banking institutions. When Billy had his operation he could say only one word, and interestingly enough that word was "No". Billy now has 16 words and has discovered the magic of music.

However, the fault in the implant and the lack of a second implant means he was unable to begin school in September and he will not begin until next September. He will also need a special needs assistant and ongoing speech and language therapy.

It just does not make sense. Why do this when we have the means to sort it out? This would be the case even if the child did nothing but enjoy music. Leaving aside his potential and all of the possibilities for his life, surely that is something very compelling.

This was Billy's fifth general anaesthetic, which is a traumatic and potentially dangerous experience for such a young child. When his implant failed, he was plunged back into a world of silence. Imagine that, even as an adult, a person is forced back into silence for six weeks. How does one explain that to a baby?

In these circumstances, it would have made sense for the HSE to agree to provide the resources needed to insert the second bilateral cochlear implant as the surgeon was replacing the faulty one. If Billy Cairns, or Anna Murphy from Westmeath, who faced a similar problem, had had two implants, they would not have lost all sound for that period and they would not have been left to learn to listen and to understand all over again. No child should have to go through this. As I said earlier, this is not hugely expensive but it would make such a huge difference to these children. In fact, it would probably save the State in the long term because, if they end up profoundly deaf, the State would have to spend more money providing care for them throughout their lives. It would also make a huge difference to their making a positive contribution to society.

In working with the parents in this campaign, I have met medical professionals who are a wonderful, inspiring example of what public service is about. One of them is Dr. Laura Viani, the ENT surgeon who first established the cochlear implant programme in Beaumont Hospital. She has been a tireless campaigner, with the parents, in seeking to ensure this service is provided for those who need it on the basis of clinical need rather than ability to pay. Sin rud an tábhachtach - on the basis of clinical need rather than ability to pay. She could have set up a private practice but such is her inspirational sense of duty and commitment that she has given decades of dedicated and selfless public service on behalf of these children who are profoundly deaf. I would like to welcome her to the Dáil and to thank her publicly on behalf of all Teachtaí for the great work she has done and the great work we hope we can help her to do in the time ahead.

In July, Dr. Viani came to Leinster House to make a presentation to a cross-party group of Teachtaí and Seanadóirí, and impressed on all of us the benefits of introducing this programme. She showed several videos of children reacting with amazement and joy as their implants are turned on for the first time - the Minister of State should see those videos. Several parents also briefed us that day and warned of the huge stress their children suffered when the single cochlear implants broke and they were returned to a silent world.

Ní seirbhís seo a féidir le na páistí seo fanacht ar. Tá sé uathu láithreach. As I said to the Minister of State privately, I was very disappointed with the Government's amendment to the Sinn Féin motion. Of course, I am happy the cochlear implant programme has provided devices for 700 patients, which is good. However, where is the sense of simply noting recommendations made by the National Audiology Review Group? That is not the same as implementing the recommendations.

The first meeting of the Oireachtas all-party group on cochlear implants was held in May. It was very well attended, with 17 Teachtaí and Seanadóirí from all the parties and Independents there, and with apologies from some who were otherwise engaged. Every Teachta and Seanadóir I have spoken to on this issue, or who has been lobbied by the Happy New Ear campaign, says they believe these children should have bilateral cochlear implants. The campaign is non-party political and, indeed, as an issue, it should be above party politics. These children cannot hear because they are profoundly deaf. The Government does not have that disability. The Government does not hear thus far because it will not listen. I still have the hope that the Government will listen and that the HSE service plan will include the business plan from Beaumont Hospital, which has been with the Government for a considerable time. The parents had a hope that the business plan would have been in some way included in Tuesday's budget. In working with them, I tried to ensure they did not build up a false hope, but they had that hope. Perhaps the reason they did is because of the positive way the Minister for Health spoke when they raised the issue with him. Of course, it did not come up in the budget and it is now awaiting clearance for the political go-ahead.

Our motion is very clear and unambiguous whereas the Government's amendment is a fudge. There is no action plan, no commitment to introduce the bilateral cochlear implant programme, no commitment to include this programme in the 2014 HSE estimates process and no timeframe for implementation of the HSE-Beaumont business plan. What the parents want to hear and have certainty on is a clear commitment from Government to a time-framed implementation for simultaneous bilateral cochlear implementation. It is a simple "Yes". Forget about the amendment. The Government is either going to do it or it is not. If it is going to do it, why put everybody through this with such a silly amendment?

It is over to the Minister. The Government needs to act. The children and their parents are in a race against time to ensure - this is a crucial point - the children have the operation before they are too old for it to be effective. The reality is that unless these implants are connected in the early years of a child's life, by the age of seven or eight the operation will be ineffective as the nerves will have died off. After that, children born and raised in silence may never speak, something which will adversely impact on them for the rest of their lives.

The Proclamation is very clear and pledges to cherish all the children of the nation equally, and to guarantee "equal rights and equal opportunities to all its citizens''. These young citizens have already faced great adversity in their short lives. They deserve the same rights and opportunities as every other child and every other citizen in the State. The Proclamation does not say we will cherish all the children of the nation equally, except the ones who are profoundly deaf, except the ones who have disabilities or except the ones who come from poor backgrounds. It says "all" of them. These páistí have the right to hear, the right to be heard and the right to have a voice. The Government can deliver all of this at relatively little expense.

The Sinn Féin Private Members' motion calls on the Government to ensure that the proposed business plan by the HSE and Beaumont Hospital to introduce a bilateral cochlear implant programme is contained in Budget 2014 and is part of the 2014 HSE estimates process. I commend that to the Minister and ask Members to oppose the Government amendment and support the motion.

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