I have had our respite increased should I celebrate.............

[2shoesdrippingwithblood]

asked for 10 more nights and got 2
and omg the things they suggested.
onwe was something where some one befreinds dd and takes her out.
so they want me to allow a complete stranger to take dd out!!
what planet do these panel people live on.
as I said to SW dd is severely disabled and very vunerable.
also how would thay take her out. the can't use my van and I won't let her on a bus.
(we live in a place where it is very hilly, so transpoty would be needed)

'Its not been suggested for us yet.'

And nor will it be!!!

You will be the one to instigate overnight respite care...a long process indeed. And far from being empathetic to your need to have overnight respite care, SS will attempt to make you feel guilty for asking for it.

[cyncial emoticon]

None taken 2shoes, although having it on my CV was one of my reasons along with wanting to help people and to gain additional experiance. I have it on my CV now but am in the process of becoming a link carer as i still have some spare time and want to help another family. From my point of view it is not a big commitment as what I do with homestart is only 3 hours a week but that makes a huge difference to the family that I work with. Thats bad about your volunteer going tits up 2shoes, I have thought about having to let down the little girl sometime in the future. I can see two problems developing, one that when she starts to develop I will have to stop taking her swimming, but there is other stuff to do so not a major problem. The main issue will be once she cant be lifted in and out of the car. I wouldnt be allowed to drive her motability car and would be stuck as what to do as taking her out for a while is the main thing the family wants. The only thing I can think of is seeing if school would let me use the bus outside of working hours. I know some places let staff borrow vehicles. Might be worth a try.

cynical even

We've used befriending, but each time I always make sure that the person understands dd's needs and that she has BIG difficulties saying good bye. She needs a lot of warning and it has to be done slowly.

We've met some lovely people though. One of them isn't in the UK any longer, but she remains in touch.

I never requested respite. How long does it take to do? I'd imagine a long time.

We were offered respite but I felt it would not work for J at this age, but instead accepted the hours as play worker hours. One comes and takes J out to drama, dancing, football and park stuff.

We got it through our Social Services Disability Team.

I think the play worker is fantastic and so does J.

oh 2shoes I know what you mean. Befriending was a waste of time for us. Most befrienders underestimate the level of ds1's needs and so can't be left alone with him (so the respite is???)

I heard today that my respite request had gone to panel, but I don't quite understand what they've given me.

we have 15 hours of respite a week in 5 3 hour blocks. Its taken over 4 years to get that though and while its down on paper it doesn't always happen!
I think we only got it cos dd is so severe and I'm disabled too and its direct payments so we are forever dealing with crappy agency that sends different workers every week which upsets dd and means I have to be in there calming her down.
Dunno about nights. It would be nice to geta full nights sleep but given dd has night seizures and I only know cos she sleeps next to me and I 'feel' a change in her breathing I don't know if anyone else could do it. Getting worried about her sleeping when she is too big to co-sleep too. If she goes into non-convulsive status and its not discovered she could die.

We co sleep with our young man of 20 who has multiple disabilities including very severe epilepsy,night seizures.He also gets 21 nights per YEAR respite,never in holidays.
There are night staff to deal with him in the night ( I hope ! ) We have tried befrienders,very mixed.Personally I feel there is not enough preparation or money.I agree that you are made to feel very guilty if you ask for over night respite.It took years and years to get respite,only when my husband had a brain tumour and two strokes did we get the respite we needed,but it has now been drastically reduced.

NMC we had to battle to get proper respite. SS don't like putting small dc's in to resenditial situstions. so offer link first. we got it early because of the link becomming a child protection issue.

'SS don't like putting small dc's in to resenditial situstions. so offer link first.'

Yes, this seems to be the case. However, the council run respite centre where my ds will access overnight respite care is split into two wings. One wing is paid for by Health and I know that kids as young as 3yrs old access overnight respite care there - albeit after the statutory fight. However the other, non-medical wing, paid for by SS, nominally takes kids from 4-5yrs old but - surprise - very few kids that age actually access overnight respite care because SS are unwilling to pay for it!!

SS shut our local overnight respite centre saying that 'parents want foster care'. Except they forgot to ask parents. Who don't actually one the whole want foster care. So now they've had to try and open a new overnight respite service. God knows how you access it though!

time4me - your situation sounds very tough; I think it's a disgrace that families are being let down by the very people who are supposed to be responsible for providing breaks for carers. And 21 nights per year sounds very low, I thought we were getting the minimum with 24 nights per year! You say your overnight respite care has been reduced - have you tried contacting your MP to help your case? As you are already aware, it's a fight to the finish, otherwise services will just be slowly withdrawn .

Well I can confirm about the age thing in respite settings, generally speaking the youngest I have worked with are 8. Apart from a couple of 5 year olds on the health side. And thats in 3 different respite centers.