Here are some suggested organisations that offer expert advice on SN.
SS Assessment next Wed, any tips?(29 Posts)
Is it an assessment for direct payments? This allows you a fixed amount of money to then fund these kind of activities.
I made sure I told them that we have very little support from grandparents extra and that my daughter often slept badly. The SW visited at a busy time which helped. We initially got 2 hours a week direct paymnets which was increased to 5 when reviewed.
I've found direct payments to be a lifeline. We employ a carer who babysits each week so we get a night out and also takes my daughter out in the holidays.
Another thing to tell the SW! Maybe drop lots of hints on the marriage breakdown statistics of parents with children with additional needs too.
Starlight - we're in a very similar position to you and are currently - as in last night and this morning - arguing with SS about, well about just about everything - they are rubbish.
Our portage worker probably gave the best advice I've heard - I said "We can manage, but I don't want my children to just manage". She replied, that unfortunately, you've got to let them think that you really can't manage in order to get anywhere.
I'd also arm yourself with the odd quote from relevant legislation - "Aiming High for Disabled Children", has some choice quotes in it, if you can bar to read it.
My favourite: "The vision behind Aiming High For Disabled Children", is for all families with disabled children to ahve the support they need to live ordinary family lives, as a matter of course".
Try to find reasons why your parents / parents-in-law/ siblings etc cannot help you - that's one thing I was asked.
we had ours and they referedus to cosroads provide some inhome respite but they got none suitable so haveasked about dp.We have a meting next week with everyone not quite team round childmeetin more teamround family bu yes he asked about family , only have my mum left and she to il herself be able to help and hae 3 other dc and single parent and my house loke dike bomb gone of in it
Starlight - your right - I went in with a whooe argument about the concept of "gatekeepers" lined up - I have wasted whole days to this recently - and I work freelance - so it's lost money at the end of the day - time I should have been working.
I ended up in a meeting with my SW's bosses boss - if you see what I mean, she is now dealing with our case - we started the meeting with her adamant that DS should just go into mainstream nursery... he's just turned 2 has a verbal dx from the paed of "classic autism with a learning disability", has no language and very little receptive language. The SW told us not to bother about DLA - as "all two year olds need that level of care" We did anyway - obviously. BUT - we're capable of arguing - starlight, you obviously are - what of those who are told something by SW and havent the skills to fight their corner...
Sorry for venting in your thread...
so far found that is lot of talking and nothing happening but shall see after Monday
Sadly, I think you are right in thinking they make it so difficult so that people will give up . Some don't have the energy for another fight, others know no better - I mean they trust that the 'professionals' are doing all they can for them <<insert emoticon with accompanying hollow laugh>>.
I am about to go through this so I am watching thread with interest. So far, despite my repeated requests (nicely) I have not even had a visit from anyone from the Child Health & Disability Team.
Thanks to my recent bout of ill health my lovely SNHV has managed to get funding for 3 hourly sessions of in house care for 6 weeks, to bath and change DS basically. The fantastic childminder we got (and want to keep) this week said 'bugger them, I'm coming for 1 x 3 hourly session and you and DP WILL go out on your own, they don't need to know' .
She has written directly to the woman from CH&D, as has my SNHV and it seems that their lack of interest in DS is because he is only 13months old, and his DLA should cover all expenses including babysitting at that age. WTF????
I signed the forms for this short amount of help, so I know exactly how much an epilepsy trained and experienced CM costs! Babysitting??? Babysitting??? Honestly, like I'd leave my severely brain damaged, globally delayed, pretty much blind and very much epileptic PFB with a fecking babysitter!!
Then of course, there's all his hospital appointments - at least 1 a week, numerous admissions to hospital - must be 10 times at least, this year. Don't know how far she thinks his DLA stretches, but it doesn't begin to cover it.
And of course, at only 13 months old it means I can't possibly have had the most difficult, stressful and worrying 13 months of my life.
At only 13 months old, I can't possibly be worried about his future.
At only 13 months old, I haven't got any worries whatsoever about his epilepsy. Obviously I don't worry about the next seizure, or the next, or the one that doesn't stop and takes him from us
So, apparently I don't need a break from this at all. Perhaps a couple more years of it will break my spirit and I'll stop asking them to do their job and give us the help we need. Hmmmmm, think again coz it's not going to happen.
Have these people holding the purse strings got a fucking clue, do you think?
Well, nice little me (or the nice little bit of me, is more accurate) is gone now. And I am going to start shouting. VERY LOUDLY.
Sorry for the rant, but I am so angry to read the same struggles over and over again on here, and to have to do it myself.
We shouldn't have to fight for this, we've got enough to do
Oops! Went on a bit there !
Meant to say, hope it goes well and do please let us know.
Good Luck x
Starlight - the trouble is that the 'struggles' become normal, and we are therefore seen as 'coping' (coz we are - we haven't got a choice really). It's only when we get the tiniest break from our 'normal' lives that we (well definitely me) can see how far from 'normal' it actually is. You get used to the stress and the worry and get on with it.
Until the day you don't/can't anymore .
That is my concern. Right now, life is good. I'm OK and DS is fan-bleeding-tastic . In my ideal world where help would have been on offer to us since he was born, I doubt I would ask for it at the moment. But I know life is going to get more complicated as he gets bigger and I want things in place now coz I basically don't trust anyone to get their arses into gear and help us if/when it is desperately needed.
feelingbetter - keep fighting the good fight! Funny - the manager in the meeting seemed to think that DS wasn't "really" disabled, because he was only 2... eh? I still don't get that one... and a part of me could keep fighting just to expose the bullshit...
Don't forget you always have recourse to the complaints procedure - it's statutory, and SW's tend not to like the Complaints Dept's prying into their business. It certainly got our SW to at least start answering her phone after ignoring us for six weeks.
Additionally, cc. to your MP and there will be a specific named councillor, who leads on scrutinising children's social care - the Complaints Manager or Town Hall will be able to give you their name - both should shake up the people who make decisions.
Doing these things shows you mean business and also shows them that you know how the system works.
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