Special Needs

A birthday present I wish I could deliver

My friend’s son Jack was 6 last week.  He had great fun celebrating with his family and friends and he got some brilliant presents too. But there is one birthday present I dearly wish Jack could have gotten, which is the news that he will have a full-time SNA when he starts school in September.  Jack has Down’s Syndrome and CINCA and has high care needs.  He is classified as having severe to profound level of disability.  He’s blond and blue-eyed with the most infectious grin ever.  He is also a complete heartstealer, I know, I’ve had the very real pleasure of spending time with Jack.

Like many other five and six year olds, Jack is supposed to be starting school in September. Because of his condition and level of needs, Jack needs to go to a special school and he has been offered a place in the nearest one to his home.    While it is great that Jack has this place, he cannot take it up unless he has a full-time SNA.  Jack cannot walk or talk, he is peg fed and wears nappies so his need for an SNA is obvious.

The process by which SNAs are appointed and assigned to children is too convoluted to go into here.  Jack’s mother has gone through this stressful process over the last few months only to be told that Jack will  be able to attend school for just one hour per day, as that is all the SNA provision that will be available to him.

Now I am sure everyone who reads this will be in agreement that this is an intolerable and appalling situation.  We all know that Ireland is in a dire financial position and we are all only too well aware that cuts are necessary to meet the conditions of the EU/IMF bailout.  (I am not going into the rights and wrongs of that issue here!)  But in the same week that Jack celebrated his sixth birthday, it emerged that Brendan Howlin, Minister for Public Expenditure, has spent €47,000 on the refurbishment of his constituency office in Wexford and his ministerial office in Dublin. Read more about this here.

Maybe I am looking at things too simplistically, but to me this kind of expenditure at a time when the country is apparently broke is just a waste of money.  Money that could be better utilised to provide an SNA for Jack so that he can go to school every day just like every other six year old.

Life has been hard for Jack, he spent most of the first three years of his life in Crumlin hospital fighting just to stay alive.  Now the fight is for him to receive the education that is his by right.

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4 thoughts on “A birthday present I wish I could deliver

  1. I am so with you on this. I wrote a recent post (Dear Minister for Education) analysing the so-called VFM report that impacts the allocation of SNA’s.

    I’m sad and so annoyed for all the children affected by this but I’m particularly sad for children like Jack. The Minister will say that they prioritise allocation of SNAs so that those who need it will have ‘access to an SNA’…which is not quite the same as being allocated an SNA. An is clearly not happening in Jack’s case.
    One hour schooling a day has GOT to be unconstitutional…. I see court cases down the road. Seriously, I do. And the only people who will gain from that is the legal profession…more wasted taxpayer’s money.

    Great post, well done. We need to keep highlighting this issue

    xx Jazzy

  2. I honestly feel sick over Jack being deprived of his chance of a education, and all the other children like Jack that the Government clearly feel are not worth spending the money on adequate sna care in school. They should be ashamed of their decisions.

  3. I met Jack & Aishling as a newborn in Crumlin with my own daughter and am filled with rage now to think of the money wasted on decorating offices where it should be spent apprioately. Sorry Jack wish I won the lotto and could help lots of families in some small way as a mother with a child with special needs I feel all your pain

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