Please let us know your experiences of respite care for disabled children

[KateMumsnet]

Hello

Just in case you hadn't seen, Mumsnet has partnered with Every Disabled Child Matters to urge Local Authorities to tell us how much money they will be spending on short breaks for families with disabled children in 2010/11.

So, if you're caring for a disabled child, or know someone who is, do please use this thread to keep us up to date with their stories, so that we can see whether or not money earmarked for respite care is getting through.

Thank you!

I am a new respite carer (link family type set up)for children with a disability.
This is something that as a family we had wanted to do for a long time, so were therefore pretty dedicated to the idea.
We had to jump through many hoops and basically go through the same process that a 'regular' foster carer would go through.
I have no problem with being throughly assessed; children are obvioulsy the priority, but I coudln't help but feel that the process was v flawed and not exactly relevant to caring for a child with a disability for one weekend a month.
Panel was gently initimidating and there were 14 people on it. They asked us various personal questions, but I couldn't help but feel that we could have given them any old nonsense and still got through (we didn't but that isn't the point).
The best bits of the process were being assessed as a hands on carer in a respite unit.
I am so glad that we have gone through the process to get where we are but think what I am trying to say is the process is long, (must be costly) intrusive and yet I can still see that it is flawed. That combined with the quite poor financial expenses that we are given would surely put a lot of people off, which is shame because it is such a fab thing to do for so many reasons.

All these posts make upsetting reading and I have been following this since the Riven story first broke. Part of the problem here seems to be that so many LAs are faceless blundering box-tickers, and I wish that all the cuts that are being discussed would weed out the employees who are like this. I do not need respite care, but my experience of it is that it is being given for 6 hours a week to a mother I know well who has a 16 year old daughter who attends school from 8.30 - 4.30 each day and who has a low iq. She has no other discernable issues other than being very quiet most of the time and having the odd tantrum, and the mother does not need to work having private income. So, why does she get this money? Because, "the council are offering it, so why would I say no?". Parents like this are in the minority I am sure, but the box-tickers ought to provide the care where it is needed most, first.

It was really interesting to see the David Cameron quote from 2007 talking about the need for parents of disabled children to have lots of breaks and to remember that parents are not volunteers. I wish he would repeat this to Warwickshire County Council as I have just left a meeting of anxious parents who are having to make a very difficult decision by this friday 4th March. Our children all attend a fantastic respite group TIME OUT which is currently councilrun and provides parents with a 3 hr break (minus the travel to and from the centre) every fortnight. The children have challenging difficulties but the staff are so skilled they are returned to us after the sessions well looked after and having been given opportunities to be part of a peer group doing activities in the local environment. The problem is that it has been suggested to parents that they might like to form a charity so that they can run and fund the group themselves. To help them on their way and presumably off the councils books, they have been offered a grant which will keep them going for 9 months. There have been no replies on whether there would be any further funding and even more worrying no positive response about what will happen to TIME OUT if parents decide against a charity. There will be no further information on this but yet parents have to decided by this friday whether to go down the charity route. I am really struggling with the idea of using any respite time to run and fund my respite? Am I mad? or just very tired? Maybe I will be mad enough to accept the volunteering opportunity?
What would you do in this situation?

Hello all

Quick update just in case you hadn't seen: our Respite Care campaign has had universal backing from all the major charities who work with disabled children and their families. Have a look at the full list of all the organizations supporting us over here.

This campaign's going to be a slow-burner, for obvious reasons - but we'll make sure we update you as a full picture emerges of how the money allocated for respite care is actually being spent. And just in case you haven't emailed your local authority to prod them (or insisted politely encouraged your friends to do so), here's the link.

Thanks again for your input, it's much appreciated. Please do continue to let us know how things are going.

my son is 9 years old has downs syndrome and as he gets older his behavior has become more challenging, i receive 2 hours every two weeks in respite care which is not long enough.
he attends a a special needs school and has an extended day on a Wednesday which is a big help and i just big told the funding is in place for another year ( thank goodness ).
i not sure how i wud cope without it .

I have a severely autistic nearly 8 year old.He is aggressive and still in nappies etc etc... We get 5 hours a week of direct payments in term time and 8 hours a week in holidays. We also get about 7 days a year (in the holidays)(which we have to contribute towards although heavily subsidised) when he can go to a playscheme from 9.30-4pm.

No after school or weekend clubs offered to us. We live in Kent.

Looking at what other people get it seems as if its not great here but I suppose it could be worse.

Respite- what respite?
Just lost ours.
Having to go through the rigmarole of trying to get DP now. It's a farce.

I asked for 1 day a fortnight of respite from ds to spend doing something with dd and just got told a flat no. No reason and wouldnt even listen to me explain why, I was just told I could go to other places or look for somewhere that I can ds with me as well as DD.

I have got a human rights solicitor for my very severe autistic girl...I am on my own with no help and she smears day and night despite having to wear specialist clothing, she soils all over herself, placing it in her own hair and all over her body (even have to clean it out of her fingernails). raymond dickson manager of flintshire social services will not give me the 2 days per week respite in which i deserve yet there is evidence he gives this to other parents, almost 3 yrs and i am still fighting this masonic scumbag. Day and night my daughter smears, self harms, strips clothing, refuses at times to eat, needs constant supervision and lives in nappies often shredding them. I cant take her out of the house for very long as she is 11 and when she goes out she uses a wheelcdhair (very heavy to push). Social services want kids in care as if they didnt then they would give parents the respite we deserve. It costs 16,000 pounds a month and more for them to live in full time care and this isn't including clothing and transport costs yet they come out with government cuts rubbish..they just want kids in care..Only One word that describes them from me and that is MASONIC!!

THERE ARE PLACES AVAILIBLE AS I CHECKED LOCAL RESPITE HOMES ETC AND IF ANY SOCIAL WORKER/MANAGER SAYS OTHERWISE THEY ARE LYING, I CHECKED A LOCAL ONE AND THEY HAVE LOTS OF PLACES AVAILIBLE. MASONIC SCUM ARE TAUGHT TO REFUSE PARENTS RESPITE TO GET PROMOTED..SICK WORLD WE LIVE IN

Never accept that what they are giving you is enough, people who care for severe children should be getting a 24 hour provision over the wkend for their human rights...relationships/friendships etc will fail if you dont get provisions and we wo care for severe autistics actually save 250,000 per yr in caring for our kids at home. I know that very severe autistics get 2 nights per week and 3 in holidays, the kids need constant supervision and self harm, they take their nappies off including specialist suits and smear at any god given opportunity, they also dont sleep at times and make high pitched sounds...We deserve a social life and our human rights, flintshire social services are a disgrace, no respect for what carers do. We dedicate our lives to our kids and save the govt a packet, Raymond dickson of flintshire social services just laughed at me when i said i cant cope alone, masonic a**hole

I actually found out its not 16,000 its 25,00 per month ...250,000 per yr