Respite Care

[needmorecoffee]

We've just got given Direct Payments for 3 hours of respite a week. Had the guy from the Agency round and he said we should be getting more respite than that. He said his company supplies 34 hours a week to one family (all on DP) who have a child more able than mine (and at bloody school) and that other families get 15 + hours when they have normal children but finding life a bit tough.
I've got MS, DH cares for me, our 2 boys plus DD with quad CP.
What do you reckon? He says we should ask for 6 hours a day at weekends and 4 week days even when dd starts school.
Anyone else get fantastic amounts?

sounds really unfair, especially given the disparity between your circumstances and "normal" families.

I hope you are able to get some more help.

i don't know anyone in rl who uses dp. but as far as respite goes it seems to vary wildly. I know people who get so much their child is hardly ever home and others who get one night a fortnight,(these are bothe dc's with severe cp)
we now get 49 term time nights(3.30 until school next day unless friday then 3.30 until 3.30 next day although we pick up at 5) and about 9 holiday nights (24 hours) but dd is now 12 and we have had to fight hard for this.

Wow, I didn't know this even existed.

We have absolutely no family even in the same country (or timezone or continent for that matter).

If DH and I want "respite" we have got a babysitter or extended DS1s nursery hours (DS2 gets to stay with us all the time...)

All at our expense of course!

Not complaining of course!

DH is a saint - he works for us, and he is wonderful with DS1 and 2, there is no way I could cope without him.

our 3 kids used to get 8 hours a month DPs
we now get 28 hours per month per child plus some daytime respite care from short breaks team to use as and when we need it.

3 hours a week sounds piddling.

In terms of respite for normal children - I have heard of social services funding some nursery time for pre-schoolers where the mothers are under pressure say due to physical/mental illness.

We get 6 hours a week during school terms, 15 a week during school holidays. I know people with less disabled children who get more (and some with equally disabled children who get nothing).

The best way I've found is to find out what others are getting and then say 'oh but X gets..... x number of hours' they always say they can't talk about individual cases (at which stage I point out I'm not asking them to), but it does seem to work.

I have also foundthat it does help not to paint to much of a rosy picture of your dh. we got 2 extra nights respite when we were going through a rough patch.

I think it depends a bit on what others are receiving locally as well. At ds1's school most parents refuse direct payments as they want 'proper' respite (e.g. overnight care/child to go somewhere) which can be bloody difficult to arrange via dp's (not impossible but it is harder). I got the impression they were pleased to give me dp's as I wasn't going to ask for (non-existent in this city now) respite services.

They also visited when ds1 was going though a 'refusing to put the lights on' stage. The clocks had just changed that week so we were all stumbling around in the dark (I hadn't tackled it because it hadn't been a problem up until that week) and they were absolutely horrified (I have an image of the SW seated in the half dark of the front room looking with horror as ds2 stumbled around in the gloom and I said 'oh we can't turn off the TV I'm afraid or we won't be able to see' ) Anyway as a result of that they have an image of ds1 being very difficult (it helps that he put his head through a window as well, which they know about) and consequently once they'd seen that and he switched to SLD/PMLD I found that really we haven't had to battle. It took a YEAR to get to that point though. I've heard SW with students several times talking about how difficult ds1 is- and I haven't done anything to disabuse them of that notion tbh.

It helps to know what you want and then ask for it - don't wait for them to offer something-it won't be enough.

The Agency we are going to use for this 3 hours seems great. It was set up by parents of 2 disabled children who were fed up with crap services. He said we should demand more DP and his agency can supply what we need. I've heard good things from other parents about this particular agency.
I'm wondering if they are freer with DP cos then you have to find someoe to do the respite than when the SS have to supply their own workers. WECIL (West of England something something) help with all the agency finding, bank set up and pay roll stuff.

We haven't had anything up to now (dd2 is 6 with SLD), but it looks like we may get 4 hours a month after Xmas. Doesn't sound that much going on this thread, but it is better than nothing.

Just thinking about this in context of my other thread (about going to the govmt consultation on carers) - one thing I think the government needs to do is somehow standardise respite provision across the country, with a standard means of assessment.

If (laughs hollowley) this were to happen what do people think should be a basic minimum amount of respite given? I personally think anything less than 4 hours a week is really a bit pointless. At least that gives you a morning or afternoon off. But interested to hear others thoughts.