respite - number of hours each month via direct payment

[bjkmummy]

just had my disability social worker round. elder boy gets 10 hours per month, younger boy gets 15 hours - she is now re doing the core assessment on younger son as his hours were increased a year ago by 5 hours a month but no formal assessment was done. new social worker wants to cover herself by doing an assessment to make sure that he needs the hours. i had wrongly assumed she was assessing to see if he needed more hours , turns out that as he gets 15 hours a month its one of the highest packages of respite which i was surprised at. so am just wondering how many hours other people get?

Ds gets 20 hours after school care per month. This is basically an hour after school four times a week. Plus he gets two nights per month respite. He used to also get a support worker for six hours per month but this was cut recently. Ds is very severely autistic and tbh now the support worker has been cut this isn't enough as we also have another child with ASD and this effectively means that we can never go out together with our children as they don't cope well with each other. Dp and I spend the weekend taking one of the children out on our own or staying in with one or other of them! However I get the distinct feeling we would get less if we applied for help at the moment as budgets are being cut quite drastically.

thats our position cansu - that we never actually get a break as if one boy is out then the other boy is at home so thereby we never actually get a break. i get the feeling though that they are expecting us to arrange our carers so both out at the same time. both boys also get 100 hours 1:1 for activities each but as youngest boys so high he needs 1:1 to attend a bi weekly saturday club plus the summer scheme so the 200 hours are wiped out in that leaving the elder boy with nothing and they are now saying he cant access anything without 1:1 although he doesnt need 1:1 all the time - just a high staff ratio so by using his hours for his brother means that he loses out as well. social worker was trying to tell me that wasnt her understanding so i showed her the emails confirming it. i was reminded that i should be grateful for what i do get and if i lived elsewhere i would get a lot less which of course i do realise and so am thinking i should just shut up and put up. they are just reviewing the one child whereas i think they should be reviewing the whole family especially as we are using one childs hours to fund the other childs - thats going to have an impact

It is very difficult if you have two dc. I think we have just got used to parenting the kids separately which is ridiculous! as dd is less severe she doesn't access social care payments. I know I could ask for an assessment but am loathe to involve her in this stuff. I hate the idea of even needing social care support for ds. It took me ages to accept t because I dislike feeling like we are being assessed even though I know this is only way to access some services like respite. I suppose I have a different approach with social care because I am always wary of their involvement. I am sure I could fight for more but I just prefer not to.

I childmind a 12 year old boy with severe autism who gets 10 hours a month with me (£9 an hour) and two 24 hour respite days (3pm Friday to 3pm Saturday). I do more hours in the school holidays too.

DD gets 4 hrs a week and 6 weeks playscheme a year..we are very grateful.

I feel really ashamed but my 2 DC's don't get Direct Payments but have
Continuing Health Care Plans paid for by the NHS.

They get 5 nights every 4 weeks together in a unit and 3hrs/week each in the home!.

School do a Saturday club once/month and a holiday club which we pay for.
I am very grateful

There are much bigger packages in other areas, I know of 36 hours per week and 2 nights respite per month.

In childrens services, my DD used to get 9hrs a week homecare plus 18 nights per year at childrens hospice (the latter not funded by SC). She also accessed a holiday club in school holidays for 1 or 2 days a week but I had to pay £15 per day for that and it was 17 miles away (meaning I drove 68 miles each time she went).
Now she has just gone in to adult services, they have carried over the 9hrs a week homecare, we still get the 18 nights at the hospice until next year, we also get 28 night overnight respite with another private provider and she goes for 3 days per week to a day activity in the school holidays. This is all funded by health though as she gets CHC funding.
I know of people who got a lot more than DD in childrens services.

thanks everyone for sharing. i am grateful that i do get help for both boys however we still do not get a break as trying to get both carers with the boys at the same time is a logistical nightmare. one carer couldnt have both boys as younger son so demanding. on the the day of the tribunal my elder sons carer had both of them but had to take her adult son with her to help and be an extra set of hands. both boys carers have at times met up but this was too much for younger son and he had to leave and be by himself with his carer - in six months we managed it 3 times for 3 hours at a time fo rboth boys to be out at the same time. so most of the time we are still caring for one child. the younger son is so demanding and finding carers for him so difficult,. i would love for us to have enough hours so that he could spend an evening with a carer so i could take the other 2 out for a meal or maybe get the elder boy to have an overnight as well but the hours we get doesnt really give us enough flexibility.

they are doing a core assessment on the younger boy and i have asked that my needs as a carer are looked at and also my daughters. strangely they are not redoing a core assessment re the elder son whereas i think our needs as a family need to be looked at as everyone in the family is interlinked so any gaps impact on the rest of the family.

We have recently changed our set-up and we now get one 3 hour tea break per week and starting in July one overnight respite per month. This will be fantastic for us and will help us so much.
It sounds very difficult for you to coordinate your care so that you get a break. It must be tough for all of you.

We get 4 hours DPs a week for (13) but are allowed to save up most of that for the holidays. Ds was 10 (after my health failed) when we started getting support. I know of others who get less in term time and more for the holidays, but this suits us as it gives us greater flexibility. He also now gets 12 overnights a year, which can be used for parental planned hospital admissions.
Life is a lot easier than before all this was put into place, and I feel lucky.
Frankly each package is different and dependent on circumstances. I think they take the needs of children more seriously than the needs of adults so if siblings are suffering through lack of respite then theoretically you have a case to ask for more. Good luck!