It wasn't as bad as I was expecting. We only lost 2 hours of support. 2 hours we well need, but at least not all of our support. This was the outcome at panel today, where faceless people who (as far as I can tell) have no real idea of what it's like to bring up a disabled child, push a budget around, and make decisions that affect your life - the infamous panel - you can't see them, talk to them, explain to them, they are the go-to excuse for all decisions - "panel decided, sorry".
The reason for the cut? Surely it's because they think our family can cope with less support, but no. The reason is a budget cut - never mind what the family and child need to keep them functioning, in good mental health and god forbid 'thriving'......
It's a strange thing, admitting that you need help and going to 'the state'. I did not enjoy it one little bit and I hate the intrusion that it brings to our life. However, I endure it because your children come first, and direct payments provide us with sanity and balance, where I can pay someone to look after Little I for a few hours, so I can do mundane things such as homework with my neuro-typical kiddies or more fun things like go to the park with all 3 children.
There are many, many things wrong with this process sadly. It takes weeks if not months to get a call-back after your initial referral (either self referral or GP), it then takes weeks or months for an assessment, it then takes weeks or months to get to panel, which almost always results in a 'decline' or a token '2 hours'. You then have to appeal this - and go through all the hoops again. This would be energy zapping for most people, but for people who have mostly reached 'breaking point' (& hence the request for help), this is disastrous and can very sadly be tragic.
Given our economic state, I honestly don't know what the answer is, and I dislike being negative. I just want to highlight something that I know is affecting many, many hundreds if not thousands of families in the UK.
Sorry, I feel like I've been on a bit of a high-horse here. My family are fine right now, but I worry for the future with cuts being made everywhere (we are now off to tribunal to challenge a mobility decision - more work :o( ) & I worry for other families that don't have the ability to fight.
The support you get from other parents in the same boat and patient, understanding friends, is what keeps us going (along with the large glass of wine and chocolate).
On the positive side today, our Little I waved at her Nanna, when she said goodbye today. Little things mean the world :o)
Love each other
xxx
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