More Respite?

[cyberseraphim]

According to the news, savings made from cutting child trust fund payments will go to paying for more respite for 'severely disabled children'

We don't use this service but if you do, do you think it will be true or just something to say to justify the first part ? If it's true I think it's a good idea.

It will all depend on where they set the definition of severely disabled

We ahve ds3's SSD assessment Wednesday; he's in a SNU, will never be independent but tehre's a lot of doubt that he will qualify for respite. DS1 who is a constant drain on us (no matter how much we love him) certainly does not hit their targets.

As long as they use phrases such as severely disabled that are only guaranteed to apply to a small percentage (easy to say if your child walks / talks then theya re not severely disabled, but if a child needs life long care then IMOthey are) then it's all just hyperbole. There need to be set definitions and ways to force SSD into action.

Besides it's not all good news- the education cuts will hit a great many kids with SN; ds2 has already had his support entirely pulled (SEN, dyspraxia and add, but clearly in need ats chool) and ds1's panel sits in the next two weeks for Comp place and extension to his statement- just what we want after such huge cuts to the Assembly and Education budgets!

I'm sure you are right - the devil will be in the definition but I still think overall targetting help to those who need it is better than giving a CTF voucher to everyone. I don't think we needed either of our vouchers compared to the need I've read about here.

Oh I totally agree aboiut CTF and would gladly hand back those we have

To me, severe disability is not being able toa chieve independent living- self care and working really. If at thirty you will still be reliant on soemone to cook / dress you / make you wash etc to me that's enough.

I know otehrs are far stricter though.

DS meets no chance of independence- he will always need a carer. He can walk and talk though, and has a highish IQ, justc an't use it (too many absences)

I met a lady with a non-verbal, SLD, dependant teenager, and she said it took her 7 years before Respite was allowed.

cyber do you know if its more respite care UK wide?
as according to fSDC both the Conservatives and Libdem manifestos before the election talked about more respite care provision in England only for some reason?
not that me and ds get any respite anyway!

No idea. But if ctf vouchers abolished for Scotland. Where will money go?

think thats what the complaint about abolishing something (cant remember what, attendance allowance maybe?)in order to provide free care for the elderly was about, they proposed to abolish it UK wide but it would only benefit the elderly in england as the elderly in scotland already received free care.
it will probably be sorted out by giving less/more money to the scottish parliament as i think it controls the budgets for some things?

Not just Scottish- same here in Wales. And there's NI.

Yes, the Asssembly does cover a lot such as education: teh Assembly budget has been hit very hard in the proposed cuts list. So chances are we will lose CTF and all our other services.

I accept other people find it ahrd to get respite but with two children with SN and one with SEN I am at teh end of my coping strategies now and the fact of having more than one disabled child counts for nothying in the assessment process (which is done on a perchild basis) adn I think that is wrong. If I am up until 12 with DS1, then up at 5 with ds3 I do think that should get us a few extra points. But it doesn't.

If we don't get it this time I have to pack in Uni as without buying some in (my Mum used to help but has got too frail lately) I doubt our coping skills. Without Mum there is absolutely nobody at all.

It's a good idea - I am a Labour supporter, but I'm shocked at the amount of money they have splashed out on child trust funds and free computers - all completely uneccessary. I hope they do improve respite for severely disabled children as well as everyone else - it's not as if it's easy to get for SLD kids and some of us have to deal with children who have no other social lives apart from respite and with kids who have zero play/social skills and abilities.

It's impossible for everyone isn't it DD? Seems so.

DS3 has no social life at all, not onme friend outside school but I wouldn't know whether to define him as severely disabled or not. He is by CARs but I know so many children who are more disabled- dow e compare it to NT, in which case absolutely, or the most severe children?

I wonder how they will magic up this respite though...
even if they put more money into reaspite.
there still has to be places to go(to me respite isn't someone coming into your house)
where will they get the staff from? dd's respite place is always short staffed.
you can't just have the bloke in the street doing it, they have to be trained.

presumably the otehr thousands of people they are making redundant? or teh forced to work for benefits brigade? We see training and qwualifyingb personality as essential, but to managers / recruiters it is very much seen (I talk from experience) as anyone - can - do - it drudge work

(Worst ever thing to do before having a child who will need are LOL- work in the system. NOT good!)

all though having said that some times untrained = good

apparently they are assigning £20million extra to respite which sounds a lot but apparently that will only buy a weeks respite for 8,000 people so it must cost £2,500 for each week...wonder how many severely disabled children there are and what their criteria will be?

Yeah, and as 2shoes says, where are these respite - or should I say short break - places going to appear from? The respite tree?

is that next to the money tree?

£2,500 sounds about right- I only know costs for asd but even a few years ago resi costs plus care package did equal that

the leg only applies to England apaprently as it's a devolved issue (not us then!)

I think as wella s defining severe they need to define respite a bit more closely. For example, DS3's SNU runs a scheme in tandem with the holiday cluib in their village where the children from the SNU can attend when needed over the summer and SSD pays for a 1-1. As it is drop in, on many days those 1-1's are not used. Therefore, tehre would be no additional costs in doing mroe of a timeshare so ds3 could access some days, to fit in with exoisting users but so far children in our village have not been funded (only 2 children and SSD have a habit of funding children for their local summer club: there isn't one here so that has been a problem). School is trying to back ds3 having access to that scheme and we only want one day a week so we can shop / have appointments- a bit of planning should make it quite feasible.

OTOH for overnight respite we'd probably only want it maybe twice a year.

Now, this isnt ewhat we need of course- DH in particular is desperate for a bit more so we can get our rented house up together enough not to risk losing it each renewal; in fact, had we a lottery win we'd get someone in on a Sunday as ds3's inability to participate in the family hobby (safety and emotional reasons) has meant I have had to compeltely give up and tehrfore give up my entire social circle (hard to explain but can't be shared- DH's input required for float to be built- electrician- whereas all I can do is paint and make trea, stuff easily replaced). Long term we hope to get some SSD provision for that on the basis that losing the friendships and contact caused me to have a bit of a breakdown earlier this year (due to severe isolation- most months I only speak to DH and Mum ijn rl as friendly adults) but it's not on the horizon ATM.