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.