How old was your dc when they started getting respite or direct payments?

[slackrunner]

Just wondering really. DD is 4.5 and has PMLD, cerebral palsy, visual impairment and now epilepsy . In the past social svcs have fobbed us off with the 'oh she's no different from any other child of her age in terms of needs' ; however I'm starting to feel that that argument may be wearing a bit thin.

Really interested to hear about others' experiences

we started getting respite help from about 6 months, now we get 15 hours a week. dd is 4.8. I had to hassle though.
DD requires 24 hour care, has severe CP, visual impairment and epilepsy.
Your social services are being arses. Demand a carers assessment. They have to do it by law.

Right, will do NMC, thanks. Have had one awful run in with Social Svcs to date, but feeling strong enough to take the b*ggers on again.

8.5 years DS, ASD, PDD, Verbal Dyspraxia. Started getting care at 5.5/6 years and atm it's only 3 hours per week. A bit concerned about how direct payments will work for us and not really keen on the idea of having to find care for him.

yep - I like the flexibility that dps may give but not so sure about whether we'll be able to find the right person.

Anyone else please?

J is 7 (autism & ADHD) and we were initially offered 3 hours a week of DPs or respite when he was 6, which is now 4.5 hours.

Didn't have to fight for the respite/DPs, but did have to fight quite hard to get accepted onto the SS Disability Team, because his only dx was ADHD and probable autism as the ADOS test waiting list (the test to confirm autism or not) was huge.

ADHD didn't meet the criteria, nor does Asperger's here, so the autism dx was the barrier to getting on their caseload, but I argued successfully that his needs were his needs were his needs, and he needed access to services to meet those needs (and mine!)

Good luck.

we have direct payments and use an agency. They are pretty good. Came out to discuss our requirements (and I'm pretty fussy) and generally manage continuity of carers.

We are just in the process of getting DP's and DD is 8. But we have been offered respite since she was a baby.

5 for dp's. Took a year to get them sorted. DS1 is severely autistic, found it much easier to access once he moved to an SLD/PMLD school. SN playscheme this year (he's 9)

5 years old also for my DS1 (ASD), although this was only when we actually sought it, may of got it earlier if we had asked.

SS had no services to offer so had to except DP's which I have used to employ some of DS1's TA's from school. Working out ok so far.

He gets 5 hours 2:1 support during termtime (39 weeks) and 16 hours 2:1 during school holidays (13 weeks).

Also asked for him to be put on the waiting list for overnight respite, but as his SW has now left the department and he has been placed on the unallocated list (for unallocated list read - unqualified social work assistant with a case load of 75+ children), I will not be holding my breath.

7ish I think. We got 3 hours per week and now she is 10 it is 5 hours a week. It was increased earlier this year. We were never offered it and had to ask. My daughter has GDD.

I find it really good and use it to pay for all kinds of stuff from baby sitting to RDA and panto tickets etc. Also have a carer provided by a charity who we pay with it.

dd was about 4. we got a link family. then when she was 6 we got proper respite at her school.

Ds is 8, we've never had either. I did apply for some respite to help over the summer holidays as poor dd always misses out but the visit from the social worker started badly when he was 2 hours late, having gone to an address we lived at 4 years ago! He was about as much help as a chocolate teapot and we haven't seen him since.

My ds was 5.3yrs old before we were allocated 3hrs Outreach per fortnight. After a successful battle , we have just got him a place at the council run respite unit. He will go for a couple of afternoon sessions initially and then he will stay overnight for two weekends each month.

End-to-end, from first referral to SS to securing a place at this unit, it has taken almost two years.

I think it's terrible that different areas offer different (or zero) services, however the one thing we all seem to have in common is that whatever services we do get, they have not been provided automatically.

correction - ds will stay for one weekend each month, not two.

Thanks everyone. Time to roll up the sleeves and do battle.

Thanks everyone. Time to roll up the sleeves and do battle.

Can I just say how hard it is to actually find out what you are entitled to. I have been told so many different things that I dont have a clue. We got another flipping questionnaire (may have seen my much earlier rant about the sheer amount of questionnaires we are asked to fill in) about what we thought of the SN services in the borough- they were services I had never even heard of.

the sad part is there is no 'entitlement' as such - it depends how much money there is in the ss coffers and how much 'need' you can demonstrate in direct contrast to anyone else. good luck if you have the misfortune to live in hampshire.
dd2 is 'not disabled enough', which i happen to agree with and have hence never requested respite or dps, but i loathe the way local families with severely disabled children are treated as having no respite 'needs' because they happen to have two parents who are not alcoholics or drug addicts. ss seem to believe that if they wait for the family unit to irrevocably break down under the stress, that it is in some way better for the child in question.