Respite..just wondering really

[feelingbetter]

......how many of us get access to overnight respite in our own homes?

After reading a few threads recently, I realise our newly demanded acquired overnight a week is a Godsend.
1 night we both have some sleep and a break, knowing DS is still close by, but being watched and generally spoilt looked after well.

It is an ideal solution for us - as I'm sure it would be for others (not everyone, I know).
Like I said, just wondering....

We don't get respite.

How come Lou? What I mean is, what excuses have they come up with to deny you it?

It seems to me (obviously in my alternative reality of 'ideal world') that what we all need is a bloody break! Even if it's a short break (1 or 2 hrs) when our LO get appropriate care in the most appropriate place (home or elsewhere) it can make the world of difference.

It's just so obvvious, why can't they make it easier to access

I don't get respite in my own home...however...and I say this rather timidly...we have a good respite package!
4 hours per week, an additional 6 hours a month and we have just started at our local respite centre where the SW wants us to build up to a week. I don't know how many hours we have been allocated for this, or weeks/weekends but I know you get a few.

sorry forgot to mention respite in school holidays also, sorted with the SW before the holiday is due...e.g..half term I have Mon, Wed and Fri afternoons respite.

The reason they have given us is that 'universal services' can be used, and we need to pay for a childminder. We can't pay a childminder, we don't have the money.

They decided that DD didn't qualify for help from them, despite her spending the time they were here sprinkling sand in her, then 9 week old, sister's face.

They wrote in their report that DD presented as a 'lively affectionate girl who like adult company'. No, she is a child with a brain malformation that is hyperactive with no sense of danger.

She has 1:1 at preschool, has a blue badge, has HRC for DLA, can't go to the toilet without supervision for safety (and we only have an upstairs one), can't be allowed to play in her bedroom for safety, and we only have a lounge downstairs.

We do have homestart for 2 hours per week.

Sorry, rant

my only respite is my mum and dad,dont really get any help from SS, refused homecare as they wouldnt provide a consistent team of people or even anyone who could do tube feeds so not much use unless i just want him bathed or entertained for an hour or two and to be honest hes got a Formula one dvd that'll do that!

since DD had tracheostomy last June (and is also 24 hrs fully ventilated) we have 4 nights respite a week in our home. 10 pm to 8 am. it is just wonderful. could not manage without. have other respite too but as DH not at home in the week I cannot bath DD on my own, so have 2 hrs 3 x a week in the evening to do bath and put her to bed. Ours are paid for by SS and sourced from Scope Inclusion who are the homecare bit of Scope (not only for CP children). Cannot recommend Scope Inclusion more highly. NB they do tube feeding too. (DD has bolus top ups).

never applied TBH, I remember the HV telling me yrs ago, "you won't get any help with him as you are too able yourself"

Maybe I should gove it a go as some day I don't feel at all able

It's actually worse than I thought

Must admit, it did take me developing a serious illness to get any help at all - think we were seen as 'fit and able' till then. Feckers!

It's so unfair

Sorry to hear that, feelingbitbetter, hope you are getting as well as you can

Thanks Lou, I am quite well at the moment

Just makes me sooooooo bloody mad as it seems that's what it takes before you get any help. It's all tucked up, safe under lock and key, whilst the purse-holders watch as people struggle on - sastisfied that they've managed to save another little bit of their budget.
Either that or they are all sadistic and enjoy it.
I'd blow the budget on respite, me, if I was in charge.

A walk in the park, an uninterupted meal, a nights sleep. It's not much to ask, is it?

Even with 2 SN dc's and being a LP, I haven't had anything. Even after being dxd with epilepsy myself. It's only now that I've got in touch with autism anglia that things (might) be moving forward on getting some sleep respite.

We get it outside our home. 1 night a week (and 1 day when the night falls on a Saturday). We also get direct payments- but that's not respite usually as there are very few people who can have ds1, it's more often an extra pair of hands or someone to look after ds2 and ds3 whilst I have ds1.

We don't get overnight respite at home - after many stops and starts, we now get 5 nights in 10 weeks at a respite project for highly dependant children.

We also get 4 hours home help a week, to help me feed and bath her, as dh is usually not at home.

scope inclusion team

dont think they cover your area Riv? i had a look but its only certain areas of England, the scottish equivalent Capability Scotland dont do it either!

What happened in our area was that Scope had a really good school for children with CP which they decided to close. They then had lots of people who had been expensively trained, plus lots of children and young people who were now having to be included in MS schools (or special schools not CP specialists). So they decided to trial a model whereby the trained people would be able to help children/young people who need extra support to be included in ordinary life. We were introduced to it by the respiratory home nurses at our hospital and I think my dd was the first non CP client they had. Now the service has grown and grown and they have a big group of carers (who they call includers) and nurses for more demanding cases. I am not sure how many of these Inclusion services they now have but I had heard it was going to be a model they would roll out nationwide as it earns them money as well as supporting their original target children/young people to access mainstream education and activities.

We never had respite for either our dd or my Dad.

I don't know if this would be useful to anyone but I found this page last night which can offer help to those looking after children with disabilities.

We may be about to get one night a month respite away from home (sleepovers) and DPs for a couple of hours a week. Ds is 10 (LD/ASD) and it is more to get him accustomed to other carers and give him some independence (my health is uncertain).