Here some suggested organisations that offer expert advice on SN.
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Got turned down for direct payments, fed up(7 Posts)
I heard yesterday that my application for 2 hours a week direct payment application was rejected by panel. Had been holding out for a good result as I've really been struggling for a while now and I'm a bit concerned about how I can keep managing.
I have DS 6 with type 1 diabetes and mild Tourette's, DS 4with ASD (goes to MLD SN school) and DS3 who's a baby. The eldest two's needs totally compete all the time and I'm exhausted.
Anyway, SW suggested a CAF in September involving both boys schools. I was too upset to ask what this is and what it might achieve, but now I'm just thinking it's more report writing crap where I get referred to as "Mum" and have to read sentences such as "Mum feels she can't leave DS 4 unsupervised at anytime" which they feel good writing but do eff all about.
I can't stand anymore sympathetic head nodding from people who can't offer me anything useful. Should I just ring her today and politely refuse? I'm sure she'll just be delighted that I'm not going to be causing her any more work.
I am turning into such a bitter woman and feel so desperate at times I don't know what else I can do.
I'd ask for a core assessment and carers assessment. I'm not sure what the point of a CAF is. It seems to be when they all sit round a table and have a chat - and there may be no outcome. It has no legal standing.
At least a core assessment has a recognised framework to follow, with legal duties - they should produce an assessment of needs and careplan for each child. If they don't provide any real provisions at the end of the core assessment process, you can apply for legal aid for your children (assuming they have no income except benefits) and solicitors will deal with it all for you.
If the carers assessment is done in relation to your children (the thinking being that often the best way to support disabled children is to support their parents), you won't be means tested and charged for any services you get, such as respite, etc.
The government guidance is called "Working Together to Safeguard Children":
Unfortunately, the government has mixed up the guidance for child protection with the assessment and care planning of disabled children; however it is in there. Luke Clements has written good leaflets on carers assessments, available on the internet. (See Cerebra I think)
IMO, a CAF is a bit like School Action Plus - no legal rights; whereas a core assessment is the equivalent to statementing. The outcomes are governed by statutes and case law. There should be a contingency plan - what the LA would do to look after your children, if anything happened to you - like you had to go to hospital
Watch out for direct payments. Some people rave about the freedom it gives them, but in some LAs it is not enough to buy the support you/your child needs; and you have to do all the administration. Also, in my LA, if you accept direct payments, you cannot access the LA's respite centres for your child.
I refuse to have direct payments or a personal budget, because that way the LA has to pay for the care hours, regardless of how much costs go up and they administer it all. I just tell them what I would like each college holiday and they arrange it.
Thanks for the replies. I will go after a carer's assessment and ditch the CAF. I can't stand another useless sitting round a table affair and it sounds like it wouldn't be of much use to me.
The point you raise about what would happen to my children if I needed to go into hospital is a very good one. Only myself, DH and school know how to administer DS1's insullin and he can't go anywhere with us. My parents can't manage to look after my children as they can't work the insullin and find DS2 too physical.
The more I think about the panel's response to my request the more fight I'm feeling to stand up for myself. You've got me back up on my feet again.
It seems you have to "beg" to get help. Keep going but I know how you feel.
Remember, what is central is to ask for a core assessment on your son; and ancillary to that carers assessments for yourselves.
How upsetting for you all. If only SW could live in your shoes for a few days! Are they recommending anything else instead ( a common first step)? They obviously think you are doing a (too) good job- which is no help right now whatever! I agree -Keep going. Its not unusual to be turned down at first especially with young children (unless the children are in immediate danger/parent ill etc.). In our area they only seem to look at the needs of the children - so its important to point out what the children may be missing (like ds not going out), and how support could help redress that. Are there any things you need DPs specifically for - would it be wise to teach another person how to do ds insulin for example, (especially if you have health needs) or if one child is being over shadowed(more than in other families of 3 young children) by the care needs of the others- DPs to take the others out?
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