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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

respite how many hours do you get?

17 replies

Psychotrace2 · 23/10/2009 18:01

had an assessment today and told direct payments would not work for me offered us a day place at a local hospital kind of place.

OP posts:

herjazz · 23/10/2009 18:09

is that what you want?

If not - hold out and fight for what you do

we get nurse come into the home 2 nights a week. Its through children's complex care team funded by local PCT. Have been referred to hospice as well

My understanding of this is that we cannot get dp payments as well but obv that's fine cos we are already getting help. But don't see why you shouldn't get hospice AND dp or other home care as we have

Original poster

Psychotrace2 · 23/10/2009 18:14

i dont know she goes to a special child minder who as learnt how to feed and look after her for 4 hours a week and we just asked for an other day or dp so we could get some one to come in and look after dd while we go out for a meal or just some free time. but she says because we dont know anyone to have her it would be no good getting dp.

OP posts:

sarah293 · 23/10/2009 18:29

This reply has been deleted

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Original poster

Psychotrace2 · 23/10/2009 18:38

WHY do they intimidate me so much! they know how tired we are too, but there is some goos news they are going to get some one to come out take ds with aspergers to pictures or some thing else to help over come his social skills and an after schools club once a month.

OP posts:

lou031205 · 23/10/2009 19:33

None. We were told we didn't qualify for SS support when our consultant referred us.

herjazz · 23/10/2009 21:48

did they come out and assess lou? 3 times they refused to come and assess our needs cos dd didn't meet criteria of disability. They have a duty of care to do assessment - legal requirement (my SW friend told me this) so obv they were out of order there

Its all just down to lack of funds and resources isn't it? As though they're trying to avoid adding to caseloads and then trying to offer least they can get away with to families

glad you got something out of them, trace. But cack you feel intimidated - prob more down to tiredness / desperation for support / anxiety/worries of being knocked back

sphil · 23/10/2009 22:14

We get 8 hours a month DPs - were originally told we didn't meet criteria (DS2 not 'challenging' enough) but were then assigned a fantastic SW who argued that DS2 is challenging in terms of the level of his delays and LDs rather than behaviour. It also helped that DS1 was in the process of being assessed for dyspraxia, so his needs were also considered.

Having said this I know someone who lives locally who is struggling to get any help at all with her son - he's more able than DS2 but far, far more demanding. I think a lot depends on how good your SW is - mine seems to know which buttons to push to get funding.

daisy5678 · 23/10/2009 22:17

J gets 5 hours a week. We were offered the choice of direct payments or just a worker coming from a local charity. Went for the second one to avoid all the paperwork!

It goes up in the holidays.

saintlydamemrsturnip · 23/10/2009 22:20

We get a mix of dp's and centre based services. So ds1 has one overnight a week in a respite centre (very good one) - and the Saturdays he goes he has a playscheme as well. This was introduced as he was finding waiting for the overnight respite really hard (would start asking for it 10 hours before he was due to go).
To get the playscheme place I had to drop my 6 hours/week term time dp's but I have kept my 18 hours per week holiday dp's.

DS1 is classed as challenging by SS- which has always helped (although he is challenging so finding people to spend dp's on isn't easy-I tend to use them to buy in an extra pair of hands).

cloelia · 23/10/2009 22:46

i really did not want dp and stood out against it; felt my dd had such complex needs that hiring people myself would be a nightmare. So I got assessed by ss and our care is provided by Scope, originally CP charity, but in our area a new test bed for in home/inclusion services for all sorts of clients, not only CP. what you get does of course depend on child and your need. I originally got help as I was working and had to bring and leave my dd in my car if she was off school (KS1) which ss had a fit about. I said, ok, if you don;t like it, what can you do about it? everything swung into action from there. Working is v v important to me so that was the starting point for help and since then (5 years ago) it has gone from there.

lou031205 · 23/10/2009 23:29

herjazz - I had two SW come out who did not know what the disabilities team could offer and at the time, DD3 was only 9 weeks (DD1 was 3.6, DD2 was 2.0). DD1 was hyper, bringing sand from outside in the garden & sprinkling it over DD3's head/face. I then had to ferry all 3 kids down one at a time from upstairs because the SW wanted to see DDs bedroom & DD wouldn't come back downstairs.

Their report said "DD1 presents as an energetic child who likes adult company...lou031205 needs to continue as she is...CWD team will not be involved" DD1 get HRC for DLA but they don't deem her disabled, so I have to cope with 3 under 4 yet DD1 needs full 1:1 at preschool. DD3 is 6 months old & I still struggle to get a dinner on the table some days, depending on how DD1 is.

borderslass · 23/10/2009 23:50

We don't get any and as he is getting older he is a lot harder to manage but we'll muddle through.

madwomanintheattic · 24/10/2009 00:28

none. to be fair we don't need any now, but sure could have used them when she spent 24/7 screaming and we couldn't feed her lol, and i had two preschoolers demanding attention! i wonder sometimes if we're going to have a problem later when she does need some support to access stuff that wouldn't be appropriate for a parent - but hope we can access some befriender stuff...

feelingbetter · 24/10/2009 01:25

We get three hours a week ATM, increasing to 6 when they can find/train someone to administer emergency meds. Also been referred to community nursing team who will come in to do overnights - once a fortnight is what I've requested, but it takes forever coz of all the reports they need. All are in now, so we should hear something soon.

I think it helps our cause that there are medical needs (as there are for you) - and that I am a demanding, stroppy little mare when I need to be .

DS still a tiddler, but I don't think we'd be offered anything now unless I had demanded

CaptainPlump · 24/10/2009 15:01

We get 6 hours DP a week for DS (nearly 6, severely autistic) which increases to 12 hours per week in the holidays. I've just asked the SW to put us forward for overnight respite at the next panel meeting, so I have my fingers crossed for that.

Original poster

Psychotrace2 · 24/10/2009 17:00

thank you i will try and push for more,

sorry for thoes who dont i would ask again!

OP posts:

lovelybubbly · 24/10/2009 17:16

i get 2 overnight respite breaks a month & 4 hours sitting service a week. i had to fight to get this as social services told me we weren't entitled to any respite care, i had to be on the verge of a nervous breakdown in order for me to get any respite at all. we get the sitting service paid for by social serices & we get direct payments for the overnight care.

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