short break care/respite

[devientenigma]

can we have a brainstorming session around what we/you/I would see as SBC/respite?

This follows the respite centre that DS used to go to, more missy than hitty, where he was extremely violent and anxious. A report has now been put together to say he should look for other provision.....but what?

Hopefully in a thread like this not only do I find answers but others may too. TIA x

[NoHaudinMaWheest]

Bumping for you Dev.

Even in the days when they said Ds and we would benefit from respite they never came up with anything remotely suitable so I am no help at all.

[salondon]

How does one get respite care? Is it through the local authority and is the intrusion worth it?

[bigbluebus]

I know quite a bit about what constitutes a short break/respite in my area and my DD accesses a number of different services. Will come back and post after tea!

[Ineedmorepatience]

In my area most of the SBC's are run out of the special schools in the form of holiday clubs and saturday clubs. The outdoor education centre runs some too. Currently you have to be in receipt of DLA but my local children's centre manager told me yesterday that from this summer a letter of diagnosis is going to be enough.

Dont know anything about over night respite sorry, could you get direct payments and then employ someone to come to your house?? I know that wouldnt really be a break but you might be able to escape for a short time.

[2old2beamum]

Oh goodness am I the only one who gets respite outside the home?
My 2 DC's 14 and 7 have continuing healthcare plans. They get 5 nights
every 28 nights DD gets Scope to take her to Brownies every week. and DS has a lovely lady who baths him x1 week.
We also get help during holidays on a Thursday as DH teaches and DS is prone to seizures
I am very aware we are very fortunate but both have complex health needs.

[vjg13]

Do some foster carers offer weekends in their own home in your area as respite?

[infamouspoo]

Can I ask how you got Scope to do anything 2old2beamum? DS has very severe CP, needs 24 hour care, epilepsy and is life limited and we get feck all.

[2old2beamum]

infamouspoo DD has Emmanuel Syndrome tube fed colostomy but no critical problems but DS sounds like your son deafblind severe cp epilepsy jej fed but Scope did not offer help. But friend's son who is similar does get weekly care from Scope ???

I think this is a good thread

[lougle]

In Hampshire we have the 'Buddy' scheme for over 7s. Parents pay £5 per hour, plus the cost of any activity. The access is unlimited as long as the child has a disability - no social worker needed and no limit to number of hours. In theory, if you could afford it, you could book 168 hours per week.

We also have the Gateway Card. This allows organisations to access extra funding, to make the adjustments needed to include a person with SN. This may mean 1:1 support, for example.

I get support in the home on 2 nights per week (2 x 2hours) from a care agency via social services. One night per week we have Homestart.

Our afterschool/holiday scheme is provided by KIDS. DD1 gets 1 evening per week (3 -6pm) although I have to travel 10 miles to collect her, which takes out around 1 hour of that time and it's not ideal with a 5 year old and a 4 year old who are both grumpy by that time. She tends to get 1 Saturday every 6 weeks or so (9.30am -1.30pm) and 1 day in half terms, 1 or 2 days in 2 week holidays, and 3-4 days in the 6 week break.

[bigbluebus]

DD gets respite hours at home, as booked by me - nurse and carer - funded by CHC
Overnight respite at childrens hospice (until next year) - not funded by public body
Overnight respite at privately run respite centre - funded by CHC
Used to go to LA funded SN holiday club in school holidays 2 days per week for which we paid £15 per session. They have just cut it to 1 session a week. (DD no longer goes as she is transitioning into adult services so goes to a day opportunity at the college we hope she will go to when she leaves school - she gets 3 days per week funded by CHC)

In our area there are a whole range of things available depending on what criteria you meet.
Overnight respite in LA funded respite centres.
Shared care arrangements (bit similar to fostering but might be for set weekends/days)I think this is being phased out though.
SN holiday clubs in school holidays.
Direct payments/Personal Budgets - so you can find your own provision.
Sports activities and craft clubs for children with SN - with low staffing ratio, so for the slightly more able children/less challenging children.
Ocassional overnight breaks away to fun places to promote independence for SN children.
Social clubs/Youth club activites for certain age groups.
Child minding for children up to 16 with SN for a limited number of hours.

Sounds a lot, but it is spread out over a very large geographical area and some of the activities can only be accessed by children who meet the DCT assessment criteria, whereas other are open to any child who is unable to access a 'mainstream' activity because of a disability or additional need

[AgnesDiPesto]

we don't have overnight respite so these are probably outlandish ideas divorced from reality but would it be possible for someone to sleep in and you to go to hotel?

Blow the budget option might be apply for disabled facilities grant for room(s) for overnight carer/ ground floor extension for DS and soundproof eg create a 'granny / carer' flat within the home.

I have been told in the past to put a child who will need care long term onto the council housing list at the first opportunity. Obviously in expectation they will get specialist housing - but that it may take years.

[devientenigma]

Thanks for the replies everyone. Oh Agnes, thanks for that, gonna enquire with the council. I'm unsure how its going to progress for us, still awaiting a meeting to discuss the outcome of the report stating he should go elsewhere. I hope others gained from the thread, if not feel free to ask more etc.