Tuesday, February 28, 2012

"You deserve an Oscar:" no, actually, I deserve some funding

Finally they were here. The woman from the Individualised Funding Trust, here to sort out our respite (personal care) payments. These are distinct from the carer support payments, which will be arranged via another route. These are of course distinct from Disability Allowance payments. Along with the diagnosis they really ought to give you a Master's Degree in Bureaucracy Management and Acronym Decoding. It would save so much time and so many phone calls.
Anyway, this woman took one look at my youngest and said how gorgeous he was. He is, it is true. He has a particularly elfin look, as if an angel just popped by into our lives, somehow losing his way from the dizzy heights of heaven. Then she took a second look, and said "But why haven't you been allocated any hours for him?" At this point, he was assiduously trying to climb out of our first-floor window. If he's a lost citizen of heaven, he seems remarkably keen on finding a swift route back home.
I explained that the Trust thought he was too young. She shook her head. "You need to go back to them. I mean, he is high maintenance, even I can see that, and look, we have a lot of children at his age or younger whose families are receiving support."
It was the nudge I needed. I rang the Trust today. As the Carers Support organisation had advised me to, but I had been wimping out of for a couple of weeks. The woman who got back to me was very nice - they all are, it's not their fault they are the scions of government rationing - and when she took some details about my son's various needs, said "You deserve an Oscar." Since I was begging for more funding, it wasn't the moment to respond honestly: honest responses would have been

1) No, I don't deserve any particular level of praise, you should see some of the friends I have with REALLY challenging children
2) No, I don't deserve an Oscar, are you saying I'm making all this up?
3) No, I don't deserve an Oscar, however I do deserve the funding you are currently denying me, will you stop complimenting me on my ability to cope and give me the resources to continue doing so?
4) No, I don't deserve an Oscar, but you do sound awfully sympathetic, either there is a chance that you will help me or you yourself deserve an Oscar because you really do sound like you care.

I do, do hope that she really does. It's hard to read the nuances, though what with being in a strange country: I was at a support group meeting this week where I couldn't tell if the organisers were being wildly, crazily, insultingly optimistic or just showing some Kiwi can-do spirit. Either way, they completely failed to catch the spirit of the group, which was full of mums who had been awarded Carers Hours and had no one available to employ to use them. Ignoring this salient fact, they bubbled away about taking the first step to getting help being the hardest, ignoring the fact that actually, the first step isn't too hard, it is the seventeenth and eighteenth steps that really grate, you know, when you have been turned down and you have to argue about it, or you do get the funding and then can't find anyone who will spend time with your challenging kids. I do hate it when professionals try to gee up SN parents. Sometimes you have to allow people the opportunity to feel a bit rubbish and say they feel like giving up. Or perhaps that is my pessimistic can't-do English self coming out.

Anyway, to the barricades. Again. I do hope I get something out of this other than praise. It's always a bad sign when people do that, and you don't need a Masters in Decoding Bureaucratic Intentions to work that one out. "You are amazing, superb, I don't know how you manage, what a fabulous job you are doing" are all bad signs. Particularly dangerous is the faux-compliment "You are coping so well." At that, you might as well start writing your appeal letter. It means they've decided to reserve the funding for someone else, who is not.

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