Carer’s Allowance under threat from ill-informed bureaucracy

3566050087_b1af426487_bImage thanks Ozio-Bao

Hammie has done a lot of fantastic work on this post at Irish Autism Action, outlining the frankly terrifying work that’s going on behind the scenes in civil service land here in Ireland. In short, under cover of the economic times, Carer’s Allowance for those looking after kids with special needs is under threat. Assessment is changing, toxic misinformation is seeping out and a lot of already hugely pressurised people are scared witless at the prospect of having their meagre support slashed. You’d be up late if you were paranoid. If you aren’t, start now.

An excerpt:

At no point were parents or advocates representing parents and carers consulted in the process. This is a payment for people who live with and care for a child with a disability. And they didn’t consult anyone who actually does this full time.

Everybody knows that we all have to face tough times. And most everybody I know is willing to make the sacrifices necessary. But this, all frivolity aside, will put suicidal thoughts in people’s heads. It is quite simply misguided at best, and nightmarishly sinister at worst.

We will have to resist, resist at every turn, and do what it takes to imprint on bureaucracy that even faceless actions by the untutored can have the most severe repercussions.

This is really great reporting from Hammie, and I am extremely grateful to her for it. Read it all here. Most especially if you care for someone with special needs here in Ireland.

And what of the future?

My fishin pole’s broke, the creek is full of sand
My woman run away with another man
No matter how I struggle and strive
I’ll never get out of this world alive.

Hank Williams

Bear with me here while I wander off the path for a moment, here where there’s a lake by the bend in the road. Yes, I know you’re busy. We’re all busy. But it’s almost May and the leaves are starting to shout a bit. Hadn’t you noticed? Park the car and walk this way.

The thoughts in my mind just now are different. Who knows how long I am here for? What can I possibly hope to achieve? Can I keep going without questioning this burden?

Whether we make it a vale of tears or a place filled with the laughter of children is, I think, ultimately down to each one of us, and to exactly how long we peer into our own reflection, here in the mirrored surface of the lake. Or I suppose more properly how deeply we peer.

Jacob is lying spreadeagled on the bed beside me as I write and one part of me thinks Wow, there’s contentment. Another part of me thinks No, he’s too quiet and he doesn’t complain the way his brothers did at his age and that’s a poor sign for his ultimate survival instinct. He could be hungry and he’d not complain, and if either his mother or I were feeling extra tired we could take advantage of that fact, sleep on a little bit ourselves, warmed in the good intentions of feeding him extra a little bit later.

So what now? Do I spend the rest of my forties wondering about what’s going to happen in my seventies, if, Allah be praised, I see them? Or do I try to reach some accommodation with my more physical animal and just give thanks for each day as it comes? There’s a balancing act between the pension plan and dinner time, a high wire that I’m going to try my best to stay on. It’s not everybody’s way, but since I’ve already owned up, at least internally, to the fact that I cannot control much of anything then it strikes me as probably the sanest way to approach this whole set-up.

Hank Williams in his infinite wisdom sang about being a man who was gettin’ kinda mad in I’ll never get out of this world alive. As is frequently the case with country songs, the truth comes out when you’re crying in your beer. Not that I’m crying, let me hasten to add. I feel blessed in what I have been given. But the nugget of truth is there. We have a short span, and if we’re lucky enough to be given the option – and not everybody is – then we ought to grasp it and make something of the time we’ve got. So next time the car is too hot and you’re in a hurry to get there and there are a million reasons why you can’t stop and the lake looks too cold and too dirty and too wet and you haven’t got swimming gear anyway, stop and jump in will ya?

Today the mailman delivered a little bit of good news. We’ve qualified for Domiciliary Care Allowance. Yet another aspect of little Ireland that I was unaware of a short while back. What does it mean? In short, it means that Jacob’s status entitles us to €300 per month in state assistance because Dee is staying at home and forfeiting, for now, the joys of going to work. All part of the graft, because frankly I wouldn’t need it if my local newsagent didn’t keep selling me shoddy lottery numbers.

But I digress. Do you ever stop to think about how society is a wonderful thing? This big, sprawling machine that is, ultimately, well intentioned? I do, all the time. You can’t take for granted the fact that your bins are collected and you have water in your tap and your local shop sells onions, but we expect these things all the time, and we whine plenty when any one of our privileges is halted for half a minute. It’s not a divine right at all, any of it, and in many, many places in this little world it’s never going to happen.

I’m going to say a little prayer of thanks to The Boss tonight for our Domiciliary Care Allowance. We’re getting it because Jacob’s chromosomes arbitrarily decided at conception to dance to their own tune, and because we’re terribly lucky to live where we are when we do. Nobody owes it to us, but it’s happening nonetheless. I think that is somehow enlightened. And so tonight I give thanks, and I cheekily ask that others less fortunate than us may enjoy the same privilege.