Saturday, October 19, 2013

a life time stuck in silence

Earlier this year I met four year old Billy Cairns from Dundalk. Like all children of his age he is friendly and smart. And he is hugely courageous. Billy is also profoundly deaf.

I mention Billy because his was the first Cochlear Implant case I raised in the Dáil and on Thursday we raised his case again and others during the party’s private members business. This is an opportunity we get once each three weeks to raise an issue of importance, have the Dáil debate it and if necessary vote on it.

Occasionally some PMB’s are so clear cut that all of the parties support them. But on Thursday, and to its shame the Fine Gael and Labour government opposed the Sinn Féin motion which called on the government to provide the money necessary to provide bilateral cochlear implants for children who are deaf.

The mothers and fathers of the children are an amazing group. 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 children.
Their Happy New Ear group is a first class example of an effective lobby group and its web site is clever and informative. I logged on again the night before the debate and listened to Emili 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 as children and parents tell their story. It is a clever, inventive, and moving video which packs an emotional wallop.

All of us in the Dáil, and from all parties and none, who have met the children and their parents have been moved and motivated by their courage and example.
For me this is an issue of fundamental rights and I said so during the debate but sometimes the least said the more effective the message. Jonathan O Brien our TD from Cork got to his feet praised the parents and children and then asked for everyone to remain silent in the Dáil chamber for several minutes so that we could all get a sense of what the children suffer.

The mothers who were sitting in the public gallery were visibly moved by his gesture. Sadly the same cannot be said of the government parties.  

Medical science has provided a means by which many of deaf children can hear. It means providing a device called a cochlear implant - a surgically implanted electronic device - that 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.

The Department of Health’s policy for the last 17 years has dictated that a patient should only receive one cochlear implant. That means that the children who go through this operation have hearing in only one ear. This is despite the fact that International best practice dictates that children receive bilateral implants, that is implants in both ears. It is a fact that children who only hear through one ear face serious hurdles as they grow. There are better Educational outcomes if a child can hear with both ears.

It allows them to determine where sounds are coming from, vital in a noisy environment like a classroom, or the playground, or in the street or the shopping centre or indeed the Dáil chamber. Similarly their confidence and sense of security is reinforced if they can hear their mother or father call them. Fundamentally it gives these children the ability to communicate with others - to make friends with other children.

Young Billy went through an operation last April to replace his faulty implant. Before that operation I raised his case in Leaders Questions. I sent word to the Taoiseach in advance so that he wouldn’t be bounced on this important issue. He was sympathetic and promised to raise the cochlear implant issue with the Minister for Health James Reilly.
I also suggested that when Billy was getting his faulty implant fixed that the second implant could be fitted. Again the Taoiseach was sympathetic. I also spoke to the Taoiseach privately and in detail on at least two occasions. I also spoke to Dr. Reilly.

I then wrote to the two of them and briefed them fully on the general issue of these profoundly deaf children’s needs and right to have bilateral implants. I followed this up with both Ministers but despite the sympathy and positive responses Billy went on to have his operation but no second implant.

The operation would have cost €18,000. This would have been taxpayers money well spent but it was refused by the government. I cannot help but compare their stinginess in Billy’s case with their generosity with public monies when it comes to giving a digout to their cronies in the banking and financial elites.

When Bill had his operation he could say only one word. NO. Billy now has 16 words and has discovered the magic of music. But the fault in the implant and the lack of a second means that he was unable to begin school in September and it will now be next September before he begins. He will also need a Special Needs Assistant and ongoing speech and language therapy.

Had Billy had a second cochlear implant his development would by now have been more advanced. When Billy’s implant failed he was plunged back into a world of silence. Imagine the trauma for any child of being forced back into silence for 6 weeks.

Noting recommendations made by the National Audiology Review Group is not the same as implementing those recommendations.

The government parties voted through an amendment to our motion which was in effect a fudge. The Minister praised the families. But there was no indication that the business plan from Beaumont hospital on the provision of bilateral cochlear implants will be resourced.
The government’s motion contained no action plan and no commitment to introduce the bilateral cochlear implant programme. Nor is there a commitment to include this programme in the 2014 HSE estimates process.

The reality is that the children and their parents are in a race against time to ensure that the children have the operation before they are too old for it to be effective. Unless these implants are connected in the early years of a child’s life that 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 the rest of their lives.

These young citizens have already faced a great deal of adversity in their short lives. They deserve the same rights and opportunities as every other child and every other citizen in this state. They have the right to hear; the right to be heard and to have a voice.



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