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

(38 Posts)
KateMumsnet (MNHQ) Mon 31-Jan-11 11:50:40

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!

emmamania Tue 24-Apr-12 18:40:30

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

emmamania Tue 24-Apr-12 18:39:11

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

emmamania Mon 26-Mar-12 06:23:52

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

emmamania Mon 26-Mar-12 06:18:49

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!!

molepom Tue 10-Jan-12 18:07:19

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. hmm

sleepysox Fri 21-Oct-11 17:21:38

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

stillenacht Fri 10-Jun-11 22:31:40

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.

bluebellamum Thu 31-Mar-11 22:56:10

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 .

KateMumsnet (MNHQ) Tue 01-Mar-11 20:53:33

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.

timedoutmum Mon 28-Feb-11 23:52:20

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?

primenot Fri 25-Feb-11 16:51:18

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.

snakesandladders Mon 14-Feb-11 13:51:34

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.

I also agree it should be about ALL carers, including those who are children themselves.

I have 2 children with ASD.

Both are severe enough to have access to specilaist education, one will need lifelong care and the other is violent.

We get access to a holiday club for whcih I am grateful but as the boys cannot access the same place (one would injure the other) that in itself is hard work: both resources require car use to access, and are 5 miles apart. One has 10.30 - 3.30 for teh give days of hal term, the otehr has 10.30- 3.30 two days, and 12.30 - 3.30 three days; my two other children and I may as well live in the car!

Of course should we lose DLA the car will vanish.

All children in our borough get access to a holiday club: 10.30 - 3.30, only the support is specialised.

My eldest turns 12 next year and will then lose all the help we get; as he is so aggressive I have no idea how we will manage, but no club exists after 12. To put it in context I have had to restrain him three times this week, and due to school moves I expect that to get worse- ASD and transition issues etc.

The other will also lose support at 12; our request for DPs was quite literally laughed at.

We would like to move closer to family as they would help but the cuts home are some of the worst around wrt to SN and we feel we have been effectively exiled from our home County by these: we cannot risk ds3's long term needs in the hope of a break whilst my parents can still help.

We are currently paying someone for a day a month respite but again, that's only as long as DLA is recieved and other cuts mean the child who is next up for assessment gets no professional support outside school now which in turn makes dla harder to get.......

DH has a history of severe depression and I dread to think how I will cope if he gets ill again and we lose respite as it is.

I have a severely autistic 12 year old

We get 1 night a week respite. And 2 days a week playscheme (sometimes on a Saturday which helps our other kids but not my attempts to work!) during school holidays. Plus 15 hours a week direct payments in school holidays. I use that to pay for people to help me so I can get all three children out (it's a 2 person job). I also try to work full time.

Actually our package is good now - and we all really benefit (including ds1 which is important). The respite centre he goes to is absolutely brilliant and they have taught him a lot - he loves going there. We were meant to get a 2 night short break once a year but my son can't cope with that ('wrong' day for respite doesn't work - respite occurs in the pattern he knows, changes cause great anxiety) so I told them not to bother. We tried it once and it was disastrous, with the fallout lasting several weeks. And we couldn't enjoy ourselves knowing ds1 was upset at being in respite on the 'wrong' day (he loves respite, but it has to be on the 'right' days).

They keep trying to cut our direct payments. A few years ago they did, which meant my son got very bored as I couldn't get him out of the house every day. He ended up covered in bruises (self injurous behaviour) and i ended up covered in bruises. I emailed SS told them I held them responsible for the bruising, they came out and had a look (within 24 hours) and it was after then we started getting sensible provision.

I have a meeting with them in April and have been warned they want to cut my package (not just mine - everyone's). They are trying to replace respite with clubs - seemingly failing to understand that my son cannot attend clubs unless he has 1:1 and is contained within locked doors. I am digging out the photos of bruising and we shall see where we end up.

MikeH Sun 13-Feb-11 13:39:24

Hello

I have been disabled since birth and my parents were refused the help they required from all our local authorities and told to ‘get on with it!’

I am now 64-years-old and nothing has changed over the years and I’ve been treated like a clinical junky and registered as mentally subnormal. This is a clear infringement upon my human rights and need help to have this stigma revoked. I also feel medical professionals should now be more ‘disability’ awareness instead of ‘ticking’ us in a box where we don’t belong.

justaboutfrayingattheseams Fri 11-Feb-11 13:12:53

We are on a waiting list.

We have been assessed as needing help urgently, that was in November.

We were meant to hear more in February.

During our assessment meeting one of the workers told me that it was just the same as any mother of three children angry but my disability support worker who was there put in a complaint on my behalf and apparently they apologised smile

kemeva Fri 11-Feb-11 12:57:15

Pls note, Mumsnet has another thread on this topic called 'RESPITE CARE FOR DISABLED CHILDREN'. I find having two threads on the same issue confusing.

what's respite care? i live in staffordshire and my daughters told me she's your daughter get on with it. and the other one is why do you need respite care? you get paid £53 a week to look after her 24/7. i'm so tired and because the lea can't find my daughter a isp for schooling she gets 6hrs home tuition a week this isn't enough to get child benefit.oh and btw if you don't get child benefit your not elligable to claim any other benefit,we are expected to live on £53 a week and i'm at the end of the road.

KateMumsnet (MNHQ) Wed 09-Feb-11 11:57:17

Hello everyone.

Thanks for your posts so far - please do keep them coming.

The good news is that Scope and TreeHouse, the national charity for autism education, have all agreed to support our joint campaign with EDCM, which urges LAs to tell us how much money they will be spending on short breaks for families with disabled children in 2010/11.

We'll keep you updated as more organisations join us!

kemeva Sun 06-Feb-11 15:39:19

I agree 2shoes, carers should be supported. Without us the welfare state would go bankrupt as we save billions of pounds every year for what in return? £50 a week carers allowance if you are lucky and don't have any ambitions to go to work in amenaingful job. My mhusband gave up his professional career 12 years ago completeley because we did not have any support at home to care for our severly disabled son. Social Service said he was too disabled, Health said his needs were not severe enough to meet continuing care - because he was under 4 st!
Professionals used to say: 'Oh, you are coping so well! You are such a nice family!"
They dismissed our plea for help regardless that we were saying that we were at breaking point. The immense stress and physical exhaustion lead to my first mental breakdown and finally we were granted some home support and later some short break days. In order to enable me to go out to work in part time, my husband stayed at home since. This year he is 65 so he will lose the Carers Allowance which means he will be looking after our son and his frail 91 years old mother for NOTHING! Without the short break support I would not be able to work and we would lose our house, our youngest son's future would be severely compromised. Having some quality breaks is only a tiny contribution to our son's life if you compare with all the human and financial sacrifice we had to make in the past 16 years. All which will result in a poor pension, health and a very worrying bleak future. Short break provisons should be seen as long term investments! No money could match the benefits of the right and timely support.

2shoes Sat 05-Feb-11 13:54:52

must just add that I thing this campaign should not just be about "children" it should be about respite for all families with a disabled person, as children do become adults.

2shoes Sat 05-Feb-11 13:53:21

my dd is now nearly 16 and is severely disabled(CP) and is Dependant on others for all her care and help in doing most things.
we are lucky that we have had respite since she was about 6, before that we had a link family which was ok, but relied on their good will way too much.
dd goes away for respite and that suits us as it gives us a proper break and as her respite is based at her sn school it gives her a chance to hang with her peers as a teen should.
we have a good respite package now, it has been increased over the years to meet our needs. but It won't be increased again due to the cuts.
sadly there is never enough money and the respite budget is all ways over budget in about may each year as SS are never given enough money.
I do worry that all this talk of short breaks and changing the way respite is provided will affect us and we will lose this life line and have it replaced by a cheaper daytime youth scheme or something like that,
people should be able to choose what respite suits them and their families.

kemeva Sat 05-Feb-11 13:37:03

Hi MummyNadine! The Short Break Campaign is for YOUR DAUGHTER too! The money provided to local authorities also to cover for your family's support at home NOT just for those who are accessing short breaks away from home. Pls write to your Cllr and ask them how they going to use the money to support you at home with your daugther!

I understand you very well as we were in a very similar situation few years ago. Unfortunately, 3 years ago we had to place our son (then 13 years old) into a residential school Monday to Friday, because the local authority couldn't meet his Special Educational Needs in its local special schools AND Social Service withdrew the 3 hours per day home support. Our son is profoundly disabled with complex needs and the intense care and the constant fight with Social Service, Education, Health, Housing etc. had taken its toll on our physical and mental health. We are simply unable to care for him without support now.
The more support you get now the longer your daughter can stay at home. Good luck!

MummyNadine Thu 03-Feb-11 23:03:28

Hi,
I live in Kingston,South West London and I have a severely disabled 14 year old daughter, as well as 3 other children. I am not sure what support is around in other areas, but we receive family support through our local social services - and I can't commend the family support side of our social services enough!(Sadly I can't say that about all SS in our area in general!) They provide a trained support worker who comes into the home and cares for the disabled child, while you can get on and do other things! In my case, being a mum to my other 3 children the youngest being my 4 year old son, as well as teaching in the afternoons. I was referred to the service by the deputy head of my daughter's special school, after my youngest son was born and I was finding it really difficult to cope with 4 children. I had never before had any help or support, and it took about 18 months for all the assessments to go through, so it was not until my disabled daughter was over 11 years old, that we received any help. But it has seriously turned my life around! We receive 6 hours a week - so basically 2 hours after school 3 times a week, and while I would dearly love more hours, it is enough for me to just get a break. We have a regular support worker, who has become like part of the family, and the times when she has been unable to come in, all the other workers we have met have been really fantastic. I just thought it might be of interest, and also to know if anyone else receives this type of support. The worry is that a campaign has started for respite care - when that does not necessarily suit all families.I would be really keen to see this campaign supporting different kinds of respite care, not just short breaks! My daughter has never been away from home, or indeed from me, and having someone come into the home and provide help and care for a disabled child, for me personally has been far preferable to sending my child away!

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