Overnight Respite: how do/did you get it?

[r3dh3d]

Not really a question for me but one that came up recently at a meeting at school and we ran out of time before we could discuss it so I'm wondering how it works generally/elsewhere. Local to us, it seems incredibly hard to get overnight respite added to your care package. If anyone has overnight, can you tell me what the process was to get it and what criteria you had to meet?

short answer: you dont!
If you do, its a huge fight and you need to be at breaking point :(

I asked this recently at a school, not that we want it now but in the future who knows dd3 will hopefully be going to a new ss soon that offers residential. The school said I had no chance of getting overnight respite what with all the cutbacks but if I could prove a need for a 24 hour curriculum then education would fund overnight at the school. I was told to bring it up at an annual review if I wanted access to the residential part of the school. Don't know if this is relevant to you, please ignore if not

DS is currently away at his first respite ever he's 16 and under adult services he was picked up yesterday and comes back tomorrow. We only got this because I got to breaking point after years of sleep deprivation which culminated in his most violent assault to date where DH had to call the police out. He was on the list for respite after he was assaulted for being different at 7 but never got anything under CHAD as there wasn't enough home based carers.His SW is coming out next week to see about setting up regular respite if all goes well this week.

So - those of you that do get overnight - is it a case of someone coming to you, or the child going elsewhere?

I'm asking because the group of children we have are mostly high medical need rather than behaviour, so in our case it would be OK (though wierd!) if someone would just come and sit in our house overnight so we could turn the monitor off & sleep while they handle the screaming and the seizures and the nappy changes. So I'm wondering if "overnight respite" is blanket refused because it's so hard/expensive to find someone who will take a child into their own home, but if not all children need that, there may be cases where overnight respite would be granted if we could get the request understood properly.

I'm having a thinky day. Can't last!

No - never had this BUT ds has been away with the school to a caravan park on 2 occasions with staff- first time for 4 nights,2nd time for 2 -don't know if they are doing it this year

Ist time I didn't know what to do with myself-we tried to concentrate on DD

I would love just one night 4 times a year or so,as long as he is happy too and having fun,but there is no chance of this for us

I'm struggling to reconcile: "everyone should have the right to short breaks" with "overnight respite is impossible". Something wrong there, no?

With DS he has gone to people who run a trust that provides short breaks for young people with LD's in a static caravan.
There should be provision for respite for medical need as well it's a much bigger need IMHO.
We never really asked for help even though he was on the list up until now as we felt that there were families far worse off than us but it became a choice between residential/supported living or respite and as far as SW bosses are concerned the respite is cheaper.

it does depend where you live - we get overnight respite every week. It started years ago and has gently built up. You need a social worker and you need to fight. Its not impossible but its also not given to you on a plate. I think it also depends on health needs as well and children with health issues seem, in this area, to get more respite available to them.

We get 2 nights a month at a residential unit.We had to fight hard and took 2 years to get our dd in there.They only have six beds and have closed bigger units down to make way for it so it is in high demand.We quite often dont get full allocation for a variety of reasons and when it canccelled usually at short notice we dont get it back.Went for 5 months last year with nothing.

There are never enough overnight respite places anywhere. So far, Aiming High has not significantly added to overnight respite places locally, apart from creating a few paid carers who have children overnight in their own homes. Most people are not given enough of a budget to employ Direct Payment workers overnight.
Without my overnight respite, our son would be in care. Full stop.

We cant get direct payments the money has run out.

This is something which obviously varies depending on where you live. My DD (16) has been going to local children's hospice since she was 2 for 18 nights a year (split into 1 long break and 3 short ones) This enables us to have a 7 day holiday every year plus 3 weekends doing things with DS. DD has PMLD and associated health needs so I too sleep next to monitor every night. We also get some help from our PCT respite service who come into house at pre-arranged times to care for DD. I know they do go to some children o/night but am aware that they were not keen on doing it as it is expensive to provide. You need to get a care/carers assessment and tell the SW what you need. Whether you get it depends on what's on offer in your area and MONEY! If your children have a 'health need' rather than social care need then any care should be funded by relevant health provider (PCT).

Must sound like we are well off for help - but unfortunately the home respite service doesn't work as well as it should (understaffed and underfunded).

Under Short Breaks (Aiming High) many children in our area with behaviour problems get o/night respite in facilities funded by LA but run by Barnardos or Action for Children. Provision has increased last year and the LA has comitted to fund Short Breaks again this coming year in spite of cuts.

Not telling you where we live as you might all move to our county and overload the provision! LOL

Hi bigbluebus would love to live in the same area as you.Our dd also pmld with associated health needs.Last time we saw sw she told us not to ask for any more help.It would make her job too difficult.Would not mind so much if we got our full allocation.

Hi Growlybear. We've just been allocated a SW after 10 yrs as have asked for DP's to buy in own care as PCT respite service does not meet our needs. Request going before a panel next week but not holding my breath. We had long drawn out wait 10 yrs ago whilst Social Care & health argued between them who should pay. Am expecting similar senario this time - or just an outright "no"!

Hospice is a breath of fresh air. Recently asked for few extra nights so we could decorate DD's bedroom. Granted without hesitation! They just understand whereas LA/PCT make you feel like you're asking for the earth to be moved!

Hi bigbluebus.im envious.We tried to get our dd in childrens hospice but were turned down due to MONEY.The center where she goes just about meets her needs but could be better.Would be better if we could buy in care but what do you say when they say there is no money.Good luck with your battle.

Think it depends on where you stay. after reading this thread i know im extremely fortunate. I stay North lanarkshire (just outside glasgow). my ds is 10 goes to respite centre Phew has been going for about 4 years now and i get 21 nights per year. i try to get fri-mon or mon-fri every 2nd month. have to say is a godsend and i couldnt cope otherwise. the staff there are amazing they have adult & kids units (kept separate) think 8 adults, 6 kids in each time. They have playroom, sitting room for dvds etc, gardens with swing, hydrotherapy pool. When there like wee holiday take kids out all the time to soft play, cinema, walks, mcdonalds etc. Cost is approx £1400 per week though if get DLA only pay contribution. my ds gets high rate care so for mon-fri i pay £40. I was also very fortunate in social worker as she was care manager for kids with disabilities, she was fantastic. (just left now have new one :( . My ds has severe autism, gdd, low muscle tone, pica. When first got respite i never even asked sw suggested. i said no chance, she took me to visit respite centre and said give it a chance now im so glad i did. At that time i was at breaking point ds was going through most challenging behaviour to date faecal smearing, i was in tears every day. Everything is a fight, the government know how much money is saved by us being carers to our dc (having said that i know they are ours, we wouldnt be without them) if more kids were in care it would cost them a fortune and they wont even give people a break to keep them together as families, its disgraceful. david cameron should know better he has sn child himself, but then i daresay he wasnt the one to care for him 24/7 like we do with our dc, he'd have a nanny.

I'm wondering how many people who DO get overnight now will lose it because it has previously been funded via Aiming High and that stops at the end of March. The scheme that replaces it - Early Intervention? - will be less money and not ringfenced. It's one of the reasons I'm sceptical of the whole Big Society Bullshit. Government funding is complex, ever-changing and surrounded by spin, and it's very easy to be funded for six months and suddenly that dries up with no warning and you're stuffed. The people best placed to stay afloat in that environment are the insiders who know how the system works, so schemes that are funded directly and staffed by the council will always be safer than anything delivered by a charity. And the knock-on effect when families are relying on a service and the plug gets pulled is ghastly.

the knock on effect is higher costs - if one family is forced to give up caring for their child, that is the end of many other children's respite places

Hope i dont lose mine wouldnt cope otherwise. (daresay i'd just have to same as most people on here who dont get it, though just dont know how i'd manage cos i actually count the days until i get a break then miss him when he's gone) Our local SW dept pay for the respite from their budget. Most kids in my sons school get this respite though some not as many days as i get. We are in dispute with sw dept at the mo (seems like a bit of a cheek now right enough, when i consider i am actually fortunate after reading this). Basically, if your dc goes to respite say Mon - Fri, and it is school term then sw used to arrange transport back & forth to school each day from respite. They now say due to cuts they cant afford this. However it would be 100 miles each day i'd need to go to get him there. I'd need to leave home at 7am to pick him up take him to school for 9. then at 3 pick him up, collect his brothers from school take him back to respite and be lucky to be home for half 6. What would be the point, where is respite in that. I have 3 ds at 3 different schools (1 at high school, 1 in primary and ds at special needs) cant possibly pick him up and get them all to school on time basically be in 3 places at 1 time. Also not good for ds who would be confused and upset to see me each day think he was going home then dropped at respite. he wouldnt know if he was coming or going and wouldnt cope. The whole thing would be stressful to me and distressful to ds. Not to mention £20 each day for fuel which i cant afford. So you are offered respite but where is the break here if i need to go back n forth each day, stress ds out & myself, and then have no patience cos im stressed with other 2 ds when it is supposed to be their time with me. I said just keep him off school then but this isnt an option as respite centre dont have enough staff to cover when school is in. We'll see how things go apparently same thing happened in other areas here, although under same council they all have own budget. The other areas have their transfers reinstated, so heres hoping.

im in NL to Shazian but struggling to get Direct Payments never mind overnight respite, they have been dragging their heels for the last 3 years! Didnt know you had to pay a bit towards Phew but £40 is pretty good isnt it!

Shazian A friend of mine had same situation as you are facing with regards transport to respite. SC provided transport to/from respite home and SN school. Child then moved to MS school and SC said they would no longer provide transport! She appealed on basis that to collect him from school each day and take him to respite home (then collect him again in morning) would be upsetting for her child and would not provide respite for her. She also has 2 other children at different schools.She appealed and won! Distance aren't quite the same though.
Can't believe they charge your child for respite out of his DLA. No charge for any o/n respite here at present but no doubt they will be considering it!

Glittery i stay Cumbernauld where are you? DS goes to Phew respite Motherwell. £40 is great though dont see point when they pay almost £1400 per week anyway, whats another £40 to them. My son goes to sn school and is on hrc. though kids on mrc and lrc also go to phew. i know from speaking to mums at school that some have constant battle to get respite but i never asked was obviously fortunate with SW. I have never asked about direct payments. Do you have social worker who could maybe help you. My ds school also really good. Bigbluebus have sent in letter saying its ridiculous not had reply back as yet, other parents also complaining and i know other areas within our council who use same respite centre have had transport reinstated, so heres hoping, fingers crossed will be sorted for when my new dates come in. I request dates that i'd like and am given as near to them as possible and you get confirmed for year from March 11 - April 12.

we are down in Uddingston, ds used to go to the Craighalbert Centre up in Cumbernauld!
I have had a few social workers...none who seem to know anything about DPs and need to go and read up on it...cue another couple of months delay!
i put in a written complaint and was told it was all going to be tied up by the end of October but due to bad weather/SW ill health/being assigned another SW/original SW coming back to work/more bad weather and various other excuses its still dragging on! Grr!

I get two nights every month at a local respite home for ds. I accessed this through a learning disabilities nurse. I think we were very lucky to get this as it seems the cutbacks would probably prevent this currently.