I spoke to our trainee social worker who carried out our core assessment. At the review panel at the beginning of January we were offered 3 hours a week Direct Payments. This is less than we had hoped for but means that we will be able to use this money to pay for someone to look after Seth 3 hours every week while Craig and I go out and have some 'us' time. Brilliant! Thing is I found out today that one of the reasons we only got 3 hours was because the panel decided that the work that we put in to make Seth independent was no different to a parent of any 4 year old. Can you believe it?!!! I know a couple of 4 years old who don't have additional needs and their parents don't need to spend hours trying to get them to hold a spoon or a bottle, or doing physio with them so that one day they might be able be able to walk or even sit themselves up, or move independently in any way, or trying to teach them signing or to choose an object so that they can actually communicate their needs. I'm offended that a panel of apparently social and health workers can say such a thing. The social worker was really apologetic and said that he had fought our case but had been 'torn apart'. He compared the experience to being thrown to the lions. Well that's nice, isn't it. What kind of a system is this?!
The other reason we only got 3 hours is that we had been offered the Babysitting Service and I had refused it on the grounds that it's only available evenings and I wanted more flexibility in choosing when I can go out. But apparently we can use our Direct Payments in conjunction with the Babysitting Service. It's a subsidised service; the babysitters charge £10 an hour- we pay half and the council pays half. I think they are just childminders - not necessarily experienced with additional needs but last time I heard you can arrange to meet with them first so that you don't get a stranger who hasn't met you or your child before turn up on your door. I'm still not really happy about it - with the Direct Payments we'll be employing a woman who works at Seth's school and so knew him a little anyway and has lots of experience dealing with special needs. But I'm willing to give it a go. It's all being reviewed in September anyway when Seth goes to school full time. For all I know that means that they'll take all of our Direct Payments away from us then. (Not without a fight though!!!!)
When it comes up to a review, it might be worth your while presenting some evidence to the panel to show just how much work Seth is. A diary of how long various tasks took, or just what Seth was able to achieve or wasn't, and so on, might influence the panel. Also, I don't know if the panel has a concise statement of Seth's needs, and what is required of any carer that babysits for you. If there's a long list of medical requirements, perhaps the panel will be more sympathetic to your view that a random babysitter won't be up to the job.
ReplyDeleteBloody hell! Thrown to the lions is right and they system is unjust and unfair.
ReplyDeleteThanks Neil. Well we had 3 interviews worth of notes, feedback from school plus they contacted all the relevant professionals for info before presenting to the board but obviously that wasn't enough. A diary sounds like a good idea.
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