Breaking point: Mother battles to get help for son

JACK McNIFFE is a unique child.

The 6-year-old from Kildare has the rare, degenerative Cinca syndrome, and is the only known child in the world to have both that and Down Syndrome.

But in another way, he’s not unique at all.

Jack started school last week and despite requiring a full-time special needs assistant (SNA), he instead receives just one hour of SNA a day, which he shares with seven other special needs children who also began school in his class at St Raphael’s special school in Celbridge, Co Kildare.

Now the fear is that further cutbacks in SNAs will exacerbate the problems already being experienced by parents like Jack’s mother, Aisling. “It is a pretty devastating illness, there is no cure, you can only manage it — and we are only barely managing it,” she says of Jack’s health condition, the full name of which is chronic infantile neurologic cutaneous and articular syndrome.

A single parent who also has a 7-year-old daughter, Aisling does not receive the carer’s allowance, though she cares for him full time.

She is dealing with the Money Advice and Budgeting Service, which is trying to help her secure the allowance, but at every turn there seems to be a new obstacle.

“I am trying to hold on to my nursing hours, which are reviewed every few months.

“Jack is waiting on equipment, a walker and a standing frame, since March from the HSE.

“The Department of Education, the Department of Health — everything is affected.”

Jack does not have it easy. Due to his condition he has cardiac defects and requires further surgery, he has pulmonary hypertension, chronic lung disease, needs hearing aids, has to be fed through a tube to his stomach and uses a wheelchair. He is on 16 medications a day.

Despite all this, and the fact that his school is doing what it can to help him, he receives SNA for just one hour a day, with the National Council for Special Education claiming the school is not fully using its allocation. It has 57 children and 20.5 SNAs. When it is all divided up, Jack and his classmates get 0.5 SNAs.

Yesterday, the Alliance Against Cuts in Education announced that it intends to fight any further reductions in SNAs and resource learning, claiming such measures were cruel and unnecessary.

It will hold a demonstration in the capital next Wednesday that will conclude with a march to Leinster House.

Aisling hopes it succeeds and fears the consequences if it does not. Despite words of support from Children’s Minister Frances Fitzgerald and others, nothing has improved.

“We have an awful lot of battles to fight and so do our children. We don’t know how long they are going to be with us. The Government should be helping us with our children and making the time we have with them precious.

“We are under too much pressure and then we are going to break. Who is going to look after our children then?”