The Annual Review

It’s that time of year when I get a call from the local authority wanting to come and do my son James’ annual review. Along comes a Social Worker I’ve never met before and more to the point, has never met James and with his supported accommodation house manager and area manager I sit for an hour and a half emphasising the things James can’t do. She really isn’t so interested in the things he can do.

It’s a process most of us are all too familiar with.

As parents we’d much rather focus on the things our children can do, the things they have achieved but that’s not how this works. It’s the same as when you fill in those never-ending benefits forms, you have to write about the worst possible day or it is likely that your child will be denied the financial support that they need and are entitled to.

I remember years ago receiving an assessment through the post that some professional or other had done, I honestly don’t recall who as there were so many of them. I read about this child who is largely non-verbal, is incontinent, has a severe learning disability and needs full support with the simplest of tasks and whilst I read the words on the page, I didn’t recognise it to be about my son at all. There was nothing of the noisy fully ambulant boy who ‘sings’ and dances along to music, who has a cheeky sense of humour and an infectious chuckle who is at the centre of our family. Nothing I read reflected any of that. It was as if I was reading about someone else.

At last years Annual Review….

…….. the Social Worker, who was obviously looking to shave a few pounds off his care package, was particularly hung up on why exactly he needed to have one to one support all night after he was in bed and asleep. James is epileptic. He has been assessed for an epilepsy mat for his bed but it was deemed unsuitable because he sleeps in a large electric cot bed. There is a degree of movement in the moving parts of the bed and therefore James constant wriggling during the night would send the epilepsy alarm into overdrive. He is also hooked up to an overnight gastrostomy feed for five hours a night. He frequently entangles himself in the feeding tubes, this poses a risk in itself and again sets off the feeding pump alarm. The need to have staff with him all night in his flat to observe him was an argument we won, we were able to justify why this is essential on this occasion but I’m in no doubt the question will be raised again.

This year I again prepared myself to dissect every aspect of James’ life, to give minute details about his toileting habits, his dietary needs, his medication schedule, what his behaviour triggers are etc etc…..etc. I’d actually rather be talking about all the positive things this gorgeous young man can do. The one who still thinks it’s hilarious when he passes wind (especially when he’s in the bath and I can hear him chuckling from downstairs), who mimics us when we sneeze, who can balance a large exercise ball on his head whilst sitting on another, who copies his Grandads ‘funny walking’ and who recognises Abbas Mamma Mia on the radio before we do and then sings “Mamma Mamma” throughout. That’s the happy young man I want to talk about but that won’t secure him all the help and funding he needs so I play along with this annual ritual as I’ve done so many times before. I’ll await the outcome of his review and see if and where they want to squeeze his budget this year and next year, I’ll do it all over again!