Here some suggested organisations that offer expert advice on SN.
Short Breaks in the news(25 Posts)
New Kids Direct Short Breaks on-line.....
Just had this forwarded to me on the same day I have been asked for my opinion on short breaks in general.
www.guardian.co.uk/society/joepublic/2009/jun/03/short-break-disabled-children Note: Need to also follow the link right through to the Kids Direct Short Breaks pdf
Feeling very flattered but wanted to give a balanced answer from a wider range of needs.
Wondered what the Mumsnet barometer would tell me? Straight wish lists or a list of what is not helpful... Come tell me....
Well, Disgusted of Surrey is seriously pissed off about this.
Let's run a bunch of "focus groups" asking families what they need. They say "respite". Because they aren't getting any. Well, that's a bit embarrassing, isn't it? Let's pretend they asked for something else and call this fabulous new idea "short breaks". That will play well with the meeja. But it seems parents are a bit suspicous of our intentions. Hmmm. Let's say we're giving new funds for it and ringfencing it. That'll lull them into a false sense of security. Now, how shall we claw that money back again? OK, let's start by privately redefining short breaks as respite. Sshhh, don't tell anyone. So we can count anyone already getting respite as receiving short breaks. Then we will "invite tenders" for providers to receive short break funds. And set the threshold so only charitable organisations who can stump up most of the funding themselves get through. So we fund 30%, they fund 70%, gosh look at the number of "short breaks" we have funded! And of course many of them we were supporting already in one way or anther. So we can quietly "review" that funding and take back with one hand what we gave with the other. Well, that was a great success! Let's have another focus group, in a posh hotel. I really enjoyed the last one and it seems we have quite a lot of funds left over this year for the sandwiches...
Well, I'm afraid I'm seriously pissed off about the whole thing.
Let's run a bunch of "focus groups" asking families what they need. They say "respite". Because most of them aren't getting any. Well, that's a bit embarrassing, isn't it? Because ... er, someone said we're supposed to provide that already, no? Let's pretend they asked for something else and call this fabulous new idea "short breaks". That will play well with the meeja. But it seems parents are a bit suspicous of our intentions. Hmmm. Let's say we're giving "new" funds for it and ringfencing it. That'll lull them into a false sense of security. Now, how shall we claw that money back again? OK, let's start by privately redefining short breaks as respite. (Sshhh, don't tell anyone.) So we can count anyone already getting respite as receiving short breaks. Then we will "invite tenders" for providers to receive short break funds. And set the threshold so only charitable organisations who can stump up most of the funding themselves get through. So we fund 30%, they fund 70%, gosh look at the number of "short breaks" we appear to have funded! And of course many of them we were supporting already in one way or anther. So we can quietly "review" that funding and either redefine it as being "short breaks" or take back with one hand what we gave with the other.
Well, that was a great success, don't you think? Let's have another focus group, in a posh hotel. I really enjoyed the last one and it seems we have quite a lot of funds left over this year for the sandwiches...
Sorry, DP in middle of edit. So pissed off I am unable to operate the keyboard!
Yes, I have issues that make me pretty too.
Those who are frequently "consulted" might know where you're coming from. But if it is the only way available to at least have some miniscule influence...
Don't want to confuse or cloud the issues....
Just what sort of respite / short breaks might help, how should they be accessed, how many hours needed, and if you were selecting a service provider, what would you look for? Any experiences of good or bad or what could be improved?
Well, I have no experience because we are not eligable for short breaks because we have 16 hours per month Dom care and 8 hours per week Direct Payments. Short breaks locally are targetted at the VAST number of people getting absolutely nothing at all.
So, personally, I'd want a break to be 1:1 care from qualified medical personnel who I could trust to haul her into hospital if necessary. It could in other ways be relatively cheap - I could put them up with my parents in a 6 bed house, it's just that my parents are too chicken to take life and death responsibility and I don't blame them.
However, the reason that we'd need that sort of support is that DD1 is complex needs. And if her level of need is the reason she gets some support already and thus disqualifies her from Short Breaks, then I'm not sure that input is helpful iyswim - we're by definition not the target group.
Hi Riven, Glad you're on this one....
For parents with needs similar to yours, what would be key criteria for a suitable service and make you feel relaxed about using it? Facilities? Easy to access/arrange? Sort of people / qualifications? Location - prefer home or away? Include sibs / family or not? Times and frequency?
Obviously, this is just a "wish making" exercise but am hoping some might be taken on board.
Ours is one of the Local Authorities that ahve alunched their new aiming high short break schemes,
So they have re-named everything, launched a new website (have a look at "activities unlimited" - I can't do links)
We ahve re registered ds2 with the LA as a disabled child.
They have employed SCOPE to source short breaks.
They sent ds2 a goody bag for registering.
I've had a look at the website & TBH it just lists all the clubs accross Suffolk that were out there anyway, a mixture of SN clubs & M/S holiday clubs that your sn child may be able to access with suppport.
If you want them to provide support you need to be assessed... I've not even looked in to that.
The only good new thing is the Woodland lodge Fully adapted Log cabin that the council as funded.
It sleeps up to 8 & families can book it for overnight or weekend breaks for a "minimal" charge.
I have phoned & I'm waiting to see about availability & cost but the lady ahsn't returned my call yet.
As for weather they ahve invested any more money in to providing respite short breaks for those most severly disabled children, well I cetainly ahve not seen it advertised on their sparkly new website.
Sorry about the typing my fingers don't move as fast as I think they do
anon, I'm jealous. We're getting a mobile home with only two bedrooms. Not enough space for the average family, especially if you need to take a carer.
Our LA has redefined short breaks to include Direct Payments, playschemes etc. too. There is no more money for proper respite in the old sense of the word but small parent-run play groups have benefitted from a bit of money, so it's not so bad.
Riven, would DP's fit the bill for a holiday with your dd?
It is beautiful & in a lovely setting (Fritton lake/Somerleyton).
Hopefully it will be made available to as many as possible to use.
I'm the same as Riven, I want to find things we can do as a family.
see Ds is not disabed enough so been told to qualify for any respite ,Dp or support at goups .That despite geting high rate moblity and high rate care and ticking the box as sigle parent with 3other children apparently I am doing to good job of coping ,goes of to look forkid sunder wash mountain , sop ds from emptying the cupbords we all know they give these without a fight
Like many parents with disabled children we have no access to respite. This is because ds is not considered disabled enough. Yet his sn often prevent him ( and the rest of our family) doing what other children and families do.
I think the type of respite should be broadened, and taylored to each family. Most of all, respite - short breaks - support whatever you call it, should be available to all families in need, BEFORE crisis is reached.
In our case organised activities suitable for his very active needs would be lovely. ( Ds cannot join in nt activities (without support) so suitable afterschool and most especially holiday clubs would make ds and our home happier for all. Our needs are not as accute or obvious as families with very severely disabled children but we have stresses directly due to the demands of ds sn that have brought us all to the brink.
had a look and to me it seems a bit of a con.
here we already have Link which means a poorly paid untrained person will look after your child to give you a break. the waiting list is huge and of course it is all ok untill the carer/slave's life changes or they have enough to put on their cv.
should have said, we get respite, and it is good, dd is in a place that she knows and we know and trust the workers, so we get to relax.
OK, I take it back... the log cabin that the local council has funded for short breaks has been booked out to a respite company.
So this new aiming high thing in Suffolk, appears to be a website with a list of kids clubs & an advert for the cabin that you CAN'T ACTUALLY USE!
Riven, your moon on a stick thingy is right!
We are supposed to get respite, but the pprevious version had given up and now we have nothing and a big silence from SS
crossroads was mentioned for us but they came out chatted and said were sorry but were short of staff and your not priorty .As for holiday clbs ds is to young and anyone else wont take withouta carer which means I got to tag along
oh, anon....come and stay in our A.H. caravan - we could sleep standing up to fit more people in.
Thanks donkey, we seem to sleep in shifts in our house anyway so I'm sure we can all squeeze in.
Sorry for the vanishing act! Had a lot of very difficult days with DC's and school lately.
Right, have just done a quick read through....
Donkey: Caravan? Obviously not the type that we all picture on the local Haven site? Otherwise how is this accessible to all?
I am acutely aware that we need accessible services that are consistent and reliable and open to all with SN children.... But my own needs and preferences, most likely, won't be the same as some other mums on here. So for variety what needs are we / should we be thinking of?.....
wheelchair accesible be big one for me .
Secure doors and locks
activities wher emy son can join in preerably without having to join in myself or no break at all
Learning disabilty, challenging behaviour, not understanding danger (so needing protection and secure locable doors),help with basic skills in older children,activities that allow children to join in despite LD or ASD preferably without a parent required.
Sn clubs that can cope with CB please!!
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