I have a severely disabled child and social services have cut my care package to NOTHING, is this happening to anyone else

[RogerMelly]

(wrote a massive post and it appears to have disappeared!

I have a 12 yo with SLD, autism, severe physical disabilities, challenging behaviour, chronic epilepsy. I have no family closeby to help even with my nt children (2 others) My husband works long hours and I have had to give up my job to care in the last 12 months because my child condition is deteriorating. We received a very small care package of 5 hours care of a saturday (daytime with a carer) and a few evenings after school (2hours at a time) so i could work or if I was not working those shifts I could spend time with my other children. I am at my absolute wits end. I had n respite for the almost 2 months of the summer holidays and my husband had to take three weeks annual leave to help me so now he has no holiday left. I have to go to my gp for medication as I am so anxious.

I just wondered if this is happening to anyone else? :(

[Peachy]

Ah yes; to the level of reasonable adaptation though

So say the rainbows group back home that met inside the church tower, they could enver have taken a wheelchair (well I ran it so we'd ahve moved but technically YKWIM)

Toilet facillities might be lacking?

You can certianly pursue it under those regs though (although most places have a waiting list- young carers here is 7 yaers- by which time ds2 who was refered would be too old, it ends at 16 & he is 10)

[StarlightMcKenzie]

Yes, ask in writing for their evidence that supports their move to reduce your child's care package. Ask them what is different about him and your family's situation from 3 months ago.

[r3dh3d]

Absolutely agree, SMK, but the OP's issue is that because she has moved LA they possibly can ignore that. 3 months ago, her DC was not getting respite from this LA. Her LA will say they cannot comment on why her DC got the package they did from the former LA, but will imply that package was incorrect which is why they are reassessing. And they will certainly claim that under the other LA, the family didn't have access to the diversity of support this LA has made available: the LA will fund or part-fund the parenting course, and will subsidise the voluntary sector support, so from their POV the context here is entirely different; they are already paying for a degree of respite for this child, albeit indirectly, it's just a question of getting them to access it. Indeed, they may claim the child still gets 5 hours' a week, just 5 very different hours that the OP is choosing not to use yet.

Obv, real-world, we know that's utter twunty bollox. But that will be the argument and I don't know the most effective challenge, without knowing how moving LA affects the legal obligations.

[RogerMelly]

I am going to try and be brief as I feel a bit exposed atm but it went back to panel and we have been given 3 hours community support p/w and 1 hour respite for me per week SW has called for a child in need meeting for 3 weeks time and I have been referred for a carers assessment. Amazingly the 1 hour p/w for me, which will be given ian 4 hour block from what i understand will be provided by a care agency and they will come into the home and take care of all of my children. They need to assess whether they are going to need one carer or two to do this (!!) within my own home and yet they expect me to go out into the community on my own with them, wtf! So I someone who needs to go on a parenting course can cope with them on my own, but professional carers can't even within my own home. I don't know whether to laugh or cry tbh

Thanks for all this input btw, i really appreciate it. I willr ead through the links later after I have walked my poor neglected dogs :)

[AlysWho]

Everything varies so much from area to area, but all i can say, is fight for it, if you dont they wont take anynotice. Work out what you help you need. Get some advice from IPSEA, CAB, EDCM, Parent Partnership, whoever, use it and quote it. Write emails clearly asking for the support you need and the reasons why they are supposed to give it to you. Get as many of the proffessionals on side as possible, appeal to their better nature, explain that you love your DC but are struggling to cope.
You can get support, there is all sorts of provision supposedly available, from Direct Payments to respite provision to P/T foster arrangements. For my local authority to take any notice I had to frighten them into thinking they were going to have to pay residential school fees (£120k+ per year, x 4yrs), split 3 ways between Health, Social services and Education, because I couldnt get our needs met in County.
If you have to, scare social services with the truth of how much it could really end up costing them in care arrangements if you were no longer able to cope.
We now have direct payments, over night respite, and a local special school placemnet. It took a while to get it all in place, they did tell me that there was NO money for DP for anyone, and that the special school was full with a waiting list. But in the end they produced the goods.
And yes i know we are very very very fortunate. For now.
xx