Benefits system should ensure that poor kids get more than better-off ones

OPINIONS:If benefits are given unwisely, the people who need them will be left short

THE LETTER arrived the day after the Dáil debate on the domiciliary care allowance. I had been granted a €1,700 respite care allowance for my autistic son Tom.

I was stunned. I receive a domiciliary care allowance of €309 every month for Tom and the respite allowance is an associated benefit. But I wasn’t expecting it.

Which is another way of saying I can get by without it.

That makes me scared. If benefits are given unwisely, the people who need them will be left short.

Independent TD Catherine Murphy’s Private Members’ Motion earlier this month called on the Government to address what she called the “utterly chaotic” way the Department of Social Protection had been granting and refusing allowances.

She’s not exaggerating. I know because my son Tom was one of the autistic kids whose grant was reviewed, discontinued, and then regranted on appeal.

One of the reasons his review resulted in the grant being taken away was probably because the reports on his condition were four, five and six years old.

The way we have gone about things in this country is to grant substantial universal benefits to parents, while children’s services remain inadequate.

I need my domiciliary care allowance to pay for services for Tom. And the reason I whooped when I got my respite grant was because I have just signed him up for an expensive course of occupational therapy. His last full occupational therapy report dates from 2006. He urgently needs occupational therapy to regulate his sensory system as he has developed terrifying obsessive compulsive behaviour.

The specialist therapist is in Kildare. I am in Dublin. We are talking diesel, time and a minder for the other children. How much will it all cost? How long is a piece of string? We can cover our living costs without the domiciliary care allowance, so it goes on the many necessary supports for Tom.

But what happens if you need the care allowance to survive and can’t pay for occupational therapy? What happens if you don’t know what occupational therapy is or where to find it?

In the UK the government has just announced they’re bringing in direct payments to parents of disabled children, so that they can choose the resources they need. It’s going to work well when the parents are engaged and informed. But lots aren’t. What happens to their kids?