how much respite / carer support is normally given

[cansu]

I am having some difficulty getting extra support from social care for my ds, severely autistic, aged 9. We currently receive 2 nights respite per month, four hours support per fortnight from cross roads carer and four hours after / before school care per week as I work part time and can't get home in time to meet taxi every day. Is this a good level of respite / help and AIBU to ask for more help? We also have a dd with ASD, aged 5.

Bumping for you.

We get 2 hours Homestart, but nothing else. I have DD1 4.8 with SN, needing constant supervision, and 2 younger girls (3.0 & 16 months). Social Services didn't want to know.

Thanks Lougle. I think social care varies massively; it seems very random, 2 hours seems particularly rubbish.

Yes. If it wasn't for Homestart, a charity

We don't get anything with 2 dd's with AS and ASD.

I get nothing ATM though granted ds ineeda not as much as some but got mum lives in a large house which is clean and tidy so is coping well

Like it matters size of my house it's not that big really it's a 4 bed with fair size lounge granted but with 4 kids duh would need a 4 bed anyway maybe need to live in small hovel oh I tried that lived in 2 bed house but still no help

Oh the large was in bold in report sling with detached etc

We have a severely autistic 11 year old. We didn't get much until recently. Now we get one overnight respite a week & a playscheme before the overnight every other Saturday. In the holidays we get an extra playscheme day once a week. We also get 15 hours a week of direct payments in holidays. Generally that provides another pair of hands rather than respite.

We arranged most of that when we had a very good social worker. She came on board after our direct payments were messed up keeping us stuck in for a summer. Ineed an extra pair of hands to get out with all 3 kids) which left me covered in bruises (I made sure ss saw them.

I'm horrified by what I'm reading. No wonder parents crack up and so many relationships fall apart.
We get a decent level of support. It's so much better than other posters here, I'm a bit embarrassed...but I'm going to tell you what we get so you can have some ammunition when you go back and demand more!

Ds gets 14 hours 2:1 support a week, 2 nights a month in respite, about 9 days a year playscheme, and recently, because we're part of a pilot scheme for Individual Budgets, funding for activities, days out etc. All LA funded. It changed our lives.

This came about because ds's dad was the main carer and got very ill. I wasn't coping. I didn't have to fight - I had a really good social worker and obviously have the right postcode.

God knows how long it'll last in the present climate, we're just making the most of it while we can.

We get 0 hours of respite too.

What LA authority are you in tallwivglasses if you dont mind me asking?

We get 6 hours per week direct payments but Im fortunate enough to have excellent family support and sad though it is with me and his dad separating I get respite when he goes to his dads!

my ds is 5 with complex physcial and learning needs

the reason given for not providing respite was that we get respite from my family.who only watch DD while i work,not really respite

i now get 64 overnights a year, day care 5 days, 4 hours a week from a befriender, and a carer 1/2 hour 5 mornings to wash and dress garry,
this was all down to a carers assesment, that highlighted to SS my own health issues.
and that as garry got older he is harder to work with now hes now 36 years old and is 6ft 5 inches and 15 stone. but is only 18 months if that mentally. his epilepsy is also badly controlled.

myra

Sorry lourobert, had to attend to a nappy-shredding incident.

I live in Newcastle-Upon-Tyne.

We get none with 2 kids with ASD. Our paediatrician has suggested we go for it, but most of the time, I feel it would be more disruption to DS1 and cause us more difficulty with his behaviour in the long run. I love any time spent with DS2 - he's a delight, but in school holidays DS1 and I and DS1 and DS2 really do need a break from each other.

Thanks for all your replies. There is definitely a massive range. I'm really shocked that some people get nothing or virtually nothing. It seems of course ridiculously unfair like everything else really!! What really annoys me is the lack of consistency and lack of any written clear rules. My social care dept don't seem to have any clear criteria that they will share with us. The last carers assessment I had was done by a trainee social worker (about 19 years old) who asked me if I had any hobbies??

Hi tallwivglasses, I'm north tyneside!!
We get 4 hours dp per week, 6 hours dp per month, 1 hour homecare each morning, 2 nights overnight respite fortnightly. Then in school hols I get all the sn playscheme going and when this isn't on I get 15 hours per week outreach.
Mind for years we couldn't get anything. In a nutshell my 5yo who couldn't walk, talk, down syndrome, heart cond, sight and hearing probs.......the list goes on wasn't disabled enough. However when I took my 7yo school refuser into school in his nappy and vest, he ate the contents of his nappy on the way, I had a sw at my door before I even got home claiming child protection. My now 9yo gets the above.

We started getting respite when ds (LD ASD very hyper) was 10 after I became very ill (I am convinced the years of stress and 24 hour care contributed to the crisis). We get 1 overnight a month, and 4 hours DPs a week to provide the active care I simply cannot do at present - ds needs to run off his energy. Before that we were ignored. Even in crisis it took 11 months to get set up.

Meant to say SS prioritise the sn childs needs childs firstly, then siblings then last of all parents. So if your preteen is not able to do the sort of preteen things (like getting to clubs/ going swimming because you need two adults to take and support him, and your other children have completely different needs) this is likely to have a higher priority than 'just' the parent needing a break to stay able. We all know we are better able to provide for our childrens needs when not exhausted/ill and that dispite our extreme efforts our sn children mostly do not have the same range of experiences as nt children but actually phrasing your requests from this point of view - ie what the child needs to be included (an extra carer perhaps).

nowt here either!

Never had any ds is now 16 and was on the list at 7 after he was assaulted by another child and had his mouth cut open for being different.
Don't know if he'll get on the list for adult respite care now as he's no longer under childrens services.

we do get respite and have done since dd was 6(she is now 15) I won't say how much, but it is very good. I think it hepls that she is at an sn school and the respite is on site.
before she was 6 it was not so good, we hand a put it on your cv link family.

6 hours a week plus various activities in the holidays. Offered overnights but don't want them right now.