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?
This is what worries me about the situation for kids with special needs in this country. Resources are limited. They will always be limited. There are more and more children being diagnosed with special needs. The rest of us are getting older and the planet can only give so much. It’s vital that the resources go to the kids who need them.
Universal benefits can never deliver in this way. The domiciliary care allowance is the property of the child, whose parents’ economic circumstances are not taken into account at all. Where is the sense in that? The child’s economic status depends entirely on that of his parents.
I would start over. Bring back the concept of a household income, rather than assessing parents individually for tax. Make all benefits, including child benefit, liable for tax so that poor kids get more than better-off kids.
And funnel money directly into services – occupational therapists, speech therapists, psychologists and others. There are many examples of unwisely directed funding in our care for kids with special needs. Take July Provision, by which a primary school teacher provides children with 40 hours of one-to-one tuition through the month of July, if their schools aren’t open.
Tom has had this service, costing the taxpayer €1,600 each year, three years running. No one has ever even checked that it happened. You could say your sister taught your child and go on holiday with the money. A friend employed a teacher who wanted the kid to tag along with her while she taught on a holiday camp.
And then again, one-to-one tuition for two hours a day is not a great option for kids with attention issues. Where’s the specialist holiday camp? For radical change to happen you need fearless questioning.
That starts with parents who say what they need and admit what they don’t. It ends with a Government that, rather than cutting necessary grants to children with lifelong conditions, admits they’re going to have to give less to better-off kids so they can give more to poor kids.
We need Opposition politicians who don’t cry crocodile tears every time special needs children are mentioned, making them, in media terms, today’s equivalent of “the black babies.” And media that do more than cry along with them. We will never have respect for the disabled if we don’t have honesty.