Respite Care for Disabled Children

[KateMumsnet]

You might have clocked that we recently joined up 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.

Since then, we've been in touch with the main charities that work with disabled children, and we're thrilled that so far Scope, Action For Children, Mencap, Sense and Treehouse (the national charity for autism education) have pledged to support the campaign.

We'll be posting up their messages of support on the Respite Campaign page over the next few days, and we'll let you know as other organisations come on board.

If you haven't yet emailed your local authority, now's your chance! It only takes a minute, we promise.

Scottish MNers should contact for Scotland's Disabled Children here

Justabout, slightly off topic but just wanted to say re: assessments, I work as a PA to a disabled lady, she has nowhere near the hours she needs and as a result is often unable to go to the loo for 8 hour stints (resulting in daily "accidents"), she asked for an extra few hours so that she could have a one more PA visit per day Mon-Fri and was told if she was reassessed, the chances are that she would be awarded less hours than she has now, rather than take that risk she has decided not to be reassessed. So, I think although they may have to do an assessment, being awarded PA hours seems unlikely. Obviously not an expert on this though, just based on my experience.

I don't know how they can justify cutting her hours, that poor lady, ffs, how humiliating for her, how could anyone go 8 hours without the toilet, never mind a person who is disabled

the council where i live started cutting back on respite last year.
my ds (adhd & asd) had his respite stopped even though i am disabled myself (s.l.e nephritis)and was assured in 2006 that i would get indeffinate respite.
it was only 2 days a month but it gave me & my 2dd's a chance to spend time together that because i am so tired all the time we dont normally get( as ds doesn't go to sleep until 2-3am and all dc have to get up at 6.30 to get ready for school).
now they have closed down the local respite centre aswell so there are even more carers who have no chance of having a break and all the council can say is it's cutbacks.
yet the leader of the council and other members went to south africa during the world cup last year on a "fact finding mission" the cut backs didn't affect that did it

IMO it truely is those that shout loudest :( I have 2 girls with Autism and DH has cancer and we get bugger all as our situation isnt bad enough to warrent respite

Yes please get a carers assessment, I only got one recently yet I've been a carer for my three children with autism for 16 years plus cared for my DH for Almost 2 years until he died from his brain tumour. I wasn't even aware there were a team of SW whos role is to support carers
I wasn't given any over night respite at all until a year after steve died. and got 7hours per month per child in direct payments. They then increased DP hours to 28 per month and two nights per month.
I've been bed bound now since December and the carers assessment only happened because of that.
I asked for more respite for the kids and it's been a nightmare, after a formal complaint and involvement of our mp we have now been given, a new SW ( other one being investigated, following complaint)
And we've been given a substantial care package.
But it shouldn't have to be so difficult to get some support and part of me worries that someone else may have their package cut as a result of my increase.

Blimey, Onlyjoking, so sorry to hear you have been/are going through all of that.

Yes, no one exactly rushes to tell you they owe you a statutory duty, do they? Even when you're already talking to them.

Hi! Pls note, Mumsnet has another thread with the same topic: ' PLEASE LET US KNOW YOUR EXPERIENCES OF RESPITE CARE FOR DISABLED CHILDREN.'
I find running two threads on the same issue confusing.

Can they be merged, with this one being pinned, the stories on that thread need to be added to this one.

Have emailed LA :)

Where is the FB group?

I really hope this campaign makes a difference (I'm sure it will :) )

lisad every single time you post that, it hits me again and I think 'How bad does it have to bloody well be, to be 'bad enough'' FFS

onlyjoking :( I'm pleased you finally have some help - but bloody hell, you'd have thought someone would have organised that for you long before now :(

Herbie they get that at school riiiight - yeah thanks for that!? You see the odd documentary about children caring for their disabled parents and although it's lovely that they are so caring, they shouldn't have to be doing it - it's not fair.

Done it, let's see how long before I get a response

This goverment stinks,because of goverment cuts,my council sheffield, feel that one of the cuts best to make to save money,is our lifeline our disabled daughters restbite centre,rushey medows,our daughter is twelve and cannot speak out for herself but this is discrimination because there will be only two such homes left in sheffield(council run),those two of which are not suitable for our daughter,rushey is perfect in all ways and meeting her needs,obviously the needs of our daughter and the much needed rest for us as a family,dont even come into the picture,we are already at breaking point!i cannot understand why they are pushing independent living and and all the other schemes onto parents and are yet leaving us so little as to choose what is right for our much loved daughter.They are leaving so many parents no hope and the only way for many will be full time restbite care,do they not realise the implications and the cost there?.I CANNOT TELL YOU HOW LOW I FEEL RIGHT NOW AFTER HAVING READ THE HEADLINES IN THE SHEFFIELD STAR THAT RUSHEY MEDOWS WILL CLOSE.I cannot see a bright future at all and all seams very black,this is not me i am a posative person and have fought so many battles for my daughter but when will the battles end and this feels like a tidal wave taking me,draining me.THIIS HAS TO BE DISCRIMINATION AGAINST MY CHILDS WISHES AND WELLBEING.

Evening all. Popping in briefly to let you know that Barnardos, KIDS, the Children's Trust, the Council For Disabled Children, the National Autistic Society and the Family Fund are also backing us - so it's looking like a v broad coalition of support.

kemeva, sorry it's confusing. We were thinking it might be best to set aside that thread for MNers to report back on their respite care experiences, and this one to let you all know how the campaign is progressing. But we'll definitely bear it in mind if the situation arises again.

blimey, that was quick. Emailed Saturday, responded Monday am!

I e-mailed last Thursday and am still waiting for a reply.

I sent the e-mails last week and got a swift reply (always guaranteed as he knows we are members ) although it basically said thank you for telling me this becuase I did not know any of it.

I do find as we have an AM as well as an MP that they both get less socialc ases to deal with and their experience is halved but equally when one is useless the other tends not to be- as we have learned to our benefit.

I have spent most of the day crying (again!) - the thought of the holiday fills me with dread as I am finding it hard with my severely autistic son at the moment. I have seen a social worker to try and get more respite over a month ago and not heard a dickie bird. I work almost full time as a teacher so am not able to hassle SS during daytime....finding it really hard at the moment. Any extra help would be fantastic.

Hi I have 4 children who are special needs 3 have aspergers and ADHD and youngest has mild cp mobility problems very unsteady falls a lot wears splints

We don't receive any support sw we never see, recently my oh walked out and I told both sw and key worker but none have been in touch since,
The place boys went to a break has closed due to funding cut I'm dreading summer holidays this half term I've already had a pc smashed, remote , house phone and a mirror as ds1 and 2 had meltdowns

Since writing this our situation has deteriorated somewhat.

DS4 has started a reression, I would guesstimate AS is where he is going to end u; we're having enormous iddues with routine, diet etc on top of the other 2 asd who are already diagnosed. DS1 has started a massie meltdown that we think is bsed on ransition so will continue until Autumn at elast, we're staring a diet but that could take ages and not work; every member of the family is bruised except DH (who was studying for the alst one). DH has become ill again, a cyclical depression that won;t stop him working but will eman I have to take over in entirety for the boys plus care for him and try to get my MA work done for teh first.

I ahve no idea how we will cope except that it will be alone becusae there are no services for us.

stillenacht I can completely understand how you are feeling, I was the same with holidays, my dd would go nuts, her routine gone, not enough support or rest time for me, and we would end up in a bad way, especially in the summer, that holiday was like a terrible endurance test for us Sending a hug your way, I wish I could help x