Can someone help me with what the reason for respite is? (or lack of it in our case)

[Agincourt]

I have a very severely disabled child, both cognitively and physically and I am receiving 3 hrs 'respite' per week, this has been reduced from a previous care package of 11+ hours per week in a different borough. I have two other children, one who is pre school age. One of the 3 hr slots of respite is now unsuitable for us as it clashes with work commitments so we are now receiving only 6 hours respite per month. The whole of half term I literally stay locked in the house as it is unsafe to go anywhere and I have no family nearby to help.

I don't know where to go from here. every meeting I have with my SW it is made out I should be grateful that I get 3 hrs and 'other people cope' is brought up a plenty but I am not coping, everything is doing my absolute head in and I feel like going outside every 5 minutes to scream. The other two children bicker constantly because I cannot give them any attention and we are shut away. I can't even drop them off anywhere as nobody else wants them, or can cope with them or they are all off doing their normal family stuff and meeting other families for days out. I feel so isolated

Sorry i posted that on accident before I finished What i want to know is, is the respite for her or for us? at every meeting it is brought up that it is for social experiences for my disabled child but surely we need a break for ourselves as well. They provide me with an hour agency care a week which is apparently for me to have a rest but they will only take care of the child with disabilities I feel like I need to know the terminology before I proceed with making a complaint and as to whether or not I am being unreasonable myself, which I don't think I am. I obviously provide a safe and loving home for all my children and I feel our needs are overlooked because of this

"Is respite for your DC or yourself" the answer is both.
You are entitled to a carers assessment in your own right as well as having an assessment of the needs of your disabled child. However, with children they seem to lump both together and assess you as a family.
So, yes your DD should be having social experiences as part of her respite. This might be by way of a respite carer who takes her out or looks after her at your home, or by way of a holiday club/ other activity that she can attend without you.
The issue of you never getting free time from your other children will not be taken into account as in that respect you are no different from anyone else with children who wants free time - you have to make your own arrangements.
From what you say, school holidays are a big issue as you cannot get out by yourself with 3 children. I can fully sympathise with you there, as it was that very situation that led me to ask for respite for my DD 11 yrs ago. I had a very energetic 4 yr old and a 6 yr old in a wheelchair with complex health needs and LD. Fortunately, I got a social worker who wrote a report that said our respite needed to be flexible as my needs in school holidays were much greater than in term time. Sadly, I know I would not get a package like this if I was asking for assessment now!!
The assessment tool that SS use takes into account a number of issues. Is the child in a safe and loving environment and being well cared for is the main one. If the answer to that is 'YES' then I'm afraid to say that you go way down the list. It is mostly about 'risk' to the child so if you are perceived to be coping then you are not a priority. (Don't get me wrong - I'm glad that children at risk of neglect get priority - but there are no bonus points for 'coping' in this game).
Having small children and a severely disabled child is incredibly difficult when you have no family support ( as I didn't).It does get easier as the NT ones get older and more independent, but that's not much help to you at the moment, I know. I think you need to speak to SS again. Are there no SN holiday activities that your DD can access to at least enable you to get out of the house with the other 2 so that they(and you) are not climbing the walls. Have you tried Crossroads - unless that is who you get your weekly respite from now. Also I think is was Surestart who had a scheme where volunteers helped families who were having difficulties and where there was a child under 5 - they could provide someone to come to your house and help keep an eye on the children while you get on with something or help you to get out of the house with them as an extra pair of hands. Do you have a carers contact centre in your area - they sometimes only deal with carers of adults, but may be able to point you in the right direction.
Sadly in these cash strapped times SS only have money to be re-active in situations where people really aren't coping and not proactive in ensuring that families continue to cope.
Sorry I don't have any answers.

Oh you do have answers, that is extremely useful, thank you. I had completely forgotten about crossroads, I was referred to them previously but the waiting list was too long (or closed) so i may try them again. I have a care liaison worker who i am actually meeting today who works for the voluntary sector and she said she will help me to understand what we can and cannot access, I don't understand really but it sounds useful and they have organised a place at young carers for the other two children. As far as playschemes are concerned there are some available in the holidays which you pay for, so when we get to that point if financially I can access them I will apply for a place for her.

I do understand that I am coping on the surface and that everything seems fine but it only takes one thing, like I hurt my shoulder, and then care becomes extremely difficult and I find it much harder to cope, cannot bath her etc. and because I am getting such little respite I am actually getting more injuries and it seems like a viscious circle. I am just under the weather though too and have been for about a month now which i don't think is helping.

Glad you are seeing a care liaison worker from the voluntary sector. Hopefully they will be well versed in what is available in your particular area.
Have you managed to see your GP about 'feeling under the weather' as this could all be symptomatic of you struggling to cope. And obviously if you don't take care of yourself then you can't take care of your family. It is so important in our situation to make your own health a priority (easier said than done - but I think there was a thread about this on here a few months ago about health issues that parents of SN children had not sought help for as they didn't have the time or energy).
I actually use some of my respite to go to the gym and I know that keeps me healthier and fitter and more able to care for my DD which is now a very physical job as she is 17. I'm not suggesting that you want to or are able to go to the gym (as it wouldn't be possible with 2 other small children) just trying to point out the importance of looking after yourself as it will help you cope with everything else.
Good luck - hope things improve for you soon.

Just another thought could you possibly get your other two children (not sure how old they are) registered as young carers?? This will enable them to do loads locally with the young carers clubs and these are free and they have loads of great activities on offer. They are prob bickering as may be bored and fed up and young carers will give them a good outlet.

There seems to have been a new 'thing' brought in - about 'enabling' so now SS have to identify how ds1 is being enabled to access the local community. I have been very clear with SS that this is NOT respite (as I do it, along with a PA - he's too much to take out alone).

I have told them that ds1 going to the respite centre is respite, the rest isn't.

If they're not providing you with respite under the current package ask for a carer's assessment. Legally they cannot refuse (although believe me they will try).

The carer liason person has been and she is now a 'voice' for me. She willbe able to call up my social worker and discuss matters about care with him without me having to be so involved. She said firstly I really need to apply for a carers assessment so she wants me to ring tomorrow and insist I have one and say the organisation and named person has requested this and they will HAVE to do it because other organisations are involved. She said then after the carers assessment they have to provide me with the right respite I need in order to carry on functioning but she said it also means they have to provide social experiences for my daughter because her having social experiences makes mine and her siblings life easier. She said I have got to stop being seen as 'coping' and I should always say a worst case scenario day as this is the only thing they will listen to. She has given me stacks of information on other groups and organisations I can attend and has asked me to apply for a carers break through the charitable donation thing which i am going to do. She said it can be used for a holiday, gym membership or whatever it is that will make my life as a carer easier. She was lovely really but she said there is no way on earth i should be expected to 'cope' on the amount of respite we are given and that it is far too low.

The siblings are under the young carers scheme but have only just signed up for it so nothing is in place atm, but yes you are right they do bicker a lot and it most probably is because they are bored :(

Thanks everyone for you help and advice

My daughter is a teenager btw, i don't think i made that very clear on my first post

She sounds good Agincourt - KBO!