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

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Original poster

To think it is ridiculous there is no help for us

279 replies

Edenviolet · 12/02/2014 14:08

All four dcs have disabilities/other health problems.

All four receive dla, 2 receive higher rates for both components.

Recently had a CAF referral done, initially we were told we would get 3 hours respite a week, then the sw manager said no we didn't qualify for that scheme.
We were told the early intervention team couldn't help us and we we referred to children with disabilities team.

CWD team said no, they would not take on our case as none of dcs have learning difficulties.

Sw then referred to the children in need team, they said they would not take the case on as dcs have lifelong conditions and they only deal with short term conditions whereas CWD deal with long term (but only if there's a recognised learning problem as well).

Sw is closing our case, thes nothing she can do and no help she can offer.

I can't believe we are stuck in between each SS team and none of them can offer us any help or support.

OP posts:
BIWI · 12/02/2014 21:24

HappyMummyOfOne I have deleted my initial response, as it would, for sure, have been deleted.

If you don't have anything helpful to say, perhaps you could consider leaving this thread? The OP was posting for help and advice, after all.

MNHQ
DawnMumsnet · 12/02/2014 21:26

Evening,

We'll shortly be moving this thread to our Special needs: Children topic, at the OP's request.

Thanks to all who have contributed so far.

Original poster
Edenviolet · 12/02/2014 21:26

Usually if we have to go on the motorway he straps his knees up with bandages and takes regular breaks.

OP posts:
AllThatGlistens · 12/02/2014 21:29

The thing is though, HappyMummyOfOne, is that none of us plan to have disabled children, it isn't a lifestyle choice we set out to make alongside picking a particular brand of car ya know Hmm

Funnyfoot · 12/02/2014 21:29

Thank you BIWI I really do need to start reading faster as I totally missed your post there. We should have a facepalm emoticon. Smile

BIWI · 12/02/2014 21:30

Sorry, Hedgehog80 - I have posted in an argumentative fashion to other posters, whilst not actually answering your OP. Many apologies. Blush

Maryz · 12/02/2014 21:35

This reply has been deleted

Message withdrawn at poster's request.

BelleateSebastian · 12/02/2014 21:36

it sounds tough Hedgehog and in an ideal world you would get some support, but the world and its economy are in a pickle and sometimes life isnt fair and you have to just get on with it! My dsf has a degenerative neurological disorder, it is crippling my dm caring for him 24/7 but the 3hr free carer breaks that used to be offered have gone now and have to be paid for.

Just cling on to the thought of the youngest going to nursery in a few months and then you will have the school day to yourself.

imagine most mums of 4 (sn or not) feel like you at times! I hope things improve soon.

wetaugust · 12/02/2014 21:37

Hedgehog

I don't know why you keep starting these threads in AIBU about support for children with disabilities.

You know from past experience that you'll get a lot of hostility - but still you do it.

Last time I invited you to the SN board where I told you you would get some support from people who have been in your situation. We explained Statementing. We linked you to an example of a statutory request letter. That was a week or so ago. If you don't get the application in immeditaely you will too late - Statements are being replaced with something else.

Have you formally request a Social Services Assessmnet under the Childrens Act and also an assessment of your own needs? If so, you will have received a written response.

If it has turned you down then complain - do it via the LA formal complaints process and also contact your Local Councillor who can help you with the complaint.

You have to be tenacious. Most people get turned down for everything these days as a matter of course - you only suceed by appealing and making yourself such a PITA to them that they'd rather give you something than to have to keep dealing with you to tell you 'No'.

MrsDeVere · 12/02/2014 21:41

This reply has been deleted

Message withdrawn at poster's request.

nkf · 12/02/2014 21:45

Wetaugust is right. AIBU is the wrong place for this sort of thread.

GobbySadcase · 12/02/2014 22:02

I will echo Maryz, OP. To be able to care for the DC effectively you need to care for yourself too. I learned this lesson the hard way.

My path followed similar. Child Disability Team refused us help, CAF did diddly squat and they keep finding reasons why we don't fit criteria for help, despite having 3 kids with multiple complex needs.

Those telling the OP to use DLA for respite - if it's used for that then what does the OP use to pay increased costs incurred as a result of the disabilities? I can't speak for the OP but mine goes on continence products because we font qualify for NHS, replacing therapies once provided by NHS but now cut, additional utilities, costs of getting to hospital or school appointments as required. Plus respite - because we don't qualify for more than 2 hours a week.

GobbySadcase · 12/02/2014 22:05

Oh and once more the poster who has made more than one poster want to hurt themselves shows up. Figures.

Enjoy that, by the way. I'm sure you get pleasure knowing that you've almost sent desperate people over the edge.

Original poster
Edenviolet · 12/02/2014 22:12

Letter requesting statement was sent over a week ago wetaugust-I used the info from ipsea website that I think you linked to for me. I'm just waiting to hear back now.

OP posts:
JadedAngel · 12/02/2014 22:17

This reply has been deleted

Message withdrawn at poster's request.

GobbySadcase · 12/02/2014 22:19

Jaded that's exactly what it's like.
Perhaps people think if they don't see it or hear about it it doesn't exist or won't happen to them.

GobbySadcase · 12/02/2014 22:20

Hedgehog - well done on statement letter. I've been needing to do that for a whole but as you know stuff gets on top of you Wink

wetaugust · 12/02/2014 22:24

Great news about the Statement application - that's one thing that's going to get you help for your DD.

Have you made a formal request to SS for a care assessment under the Childrens Act?

Jaded Of course people should be able to post whever they want but AIBU is notorious for its lack of empathy and TBH the majority of posters on there really don't have much to offer in the way of practical experience.

Maryz · 12/02/2014 22:25

This reply has been deleted

Message withdrawn at poster's request.

wetaugust · 12/02/2014 22:38

It is so practically impossible to get any help at all that many people just give up.

Yes, many people do give up. Some fall at the first hurdle and some keep going despite the authorities moving the finishing line Grin

But I disagree with you when you say 'it is so practically impossible'. That sends out a very negative message to anyone scanning these boards who may be deciding whether or not to seek help.

Getting some support is possible if you are tenacious enough and have the energy to fight them every step of the way for it. Part of the problem is that people do give up at the first hurdle because they still trust those who are in responsble roles not to lie to them. Another reason is that they don't know how to complain or who to complain to.

That's where this littel board is useful because it can act as a sounding board to tell parents, yes, school / LA / SS have lied to you. Yes, there are ways of complaining and here's how to do it.

It's the people who bleat on constantly without doing anything practical at all to improve their situation are the people who bug me. They are the people who are letting their children down.

Hedgehog thought that school couldn't/wouldn't help but now she has applied for a Statement she has taken a practical step towards getting her DD the help she will need. Hedgehog shouldn't be left thinking that 'it is so practically impossible' to obtain any support.

Original poster
Edenviolet · 12/02/2014 22:38

No, we were referred via CAF form from dds diabetes team.

OP posts:
wetaugust · 12/02/2014 22:39

Good - because that means you have another channel open to you.
Hang on while I find the right link.

GobbySadcase · 12/02/2014 22:43

What about those of us who have fought - bloody hard - yet still don't get much to the point where we pay for respite?

How DARE you say I let my kids down. I don't. We struggle to the detriment of me and DH but the kids DO NOT MISS OUT.

wetaugust · 12/02/2014 22:45

Ok Hedgehog

This tells you all about it.

www.nhs.uk/CarersDirect/guide/assessments/Pages/ChildrenActsassessments.aspx

If your child has a disability (which she does) the LA has a duty under the Childrens Act to assess her needs and also to separately assess you own, as her carer.

So, again it's a case of writing a short letter to the CWD team making your formal request, as the carer of a child with disabilities for assessment of the child's needs under the Childrens Act and an assessment of your own.

They must carry out an assessment. They will then respond to your request in writing. Make sure you get their response in writing.

If they refuse to assess come back here. You can complain.

If they assess and refuse all support - come back here. You can appeal.

These are practical steps to get your child help.

Original poster
Edenviolet · 12/02/2014 22:47

Have just realised I've got an email from dds diabetes nurse saying they won't support statement application.

I think they are just pissed off we walked out of appt last week and have been referred elsewhere due to the appalling level of care they've provided.

Hopefully new hospital will see us ASAP and support us.

OP posts: