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Here some suggested organisations that offer expert advice on SN.

To think it is ridiculous there is no help for us

(280 Posts)

MNHQ have commented on this thread.

Edenviolet Wed 12-Feb-14 14:08:23

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.

Sparklymommy Wed 12-Feb-14 14:15:34

Have you tried applying to charities? Ss are stretched quite tight and as I understand it until there is a crisis they don't tend to do much. You don't say what the disabililties involve but I would definitely see if there is a charity that could help you with some respite.

WooWooOwl Wed 12-Feb-14 14:16:59

What type of support do you need? Do you at least have good school places?

AwfulMaureen Wed 12-Feb-14 14:18:00

Is there some kind of Ombudsman? I reccomend you ask about this on the special needs children section here on MN...it's an ongoing and unfair problem for many sad

Edenviolet Wed 12-Feb-14 14:18:19

I have tried to have a look but charities associated with dcs disabilities don't seem to offer much in the way if financial help/respite/support.

Home start shut here last year, family fund I don't think give grants towards medical equipment/respite etc.

I just don't understand why the children with disabilities team wouldn't take the case on?

AwfulMaureen Wed 12-Feb-14 14:18:31

WooWoo OP wants respite. A rest!

Edenviolet Wed 12-Feb-14 14:20:15

School places are ok. Dd1 at an independent school, ds1 at a good state school where (hopefully) dd2 will start in sep but we are trying to get a statement for her.

What I really needed was support and some respite. The three hours a week sounded a good start but then we were told we "didn't qualify".

We have had lots of meetings and they were just pointless.

Stinklebell Wed 12-Feb-14 14:20:37

Have you got a Children's Rights Officer within your Children's Services?

I've had a lot of dealings with ours and he's been brilliant , I'm a foster carer so I deal with LAC social workers so different circumstances, but they should still be able to help you

Edenviolet Wed 12-Feb-14 14:21:50

All the meetings just seemed to be hours of going through all the dcs problems, asking what was already in place and then us being told that this team or that team can't help and to come to another meeting.

Patchouli Wed 12-Feb-14 14:24:02

What about Direct a Payments? Employing staff.
Is that a way you could go?

ifyourehoppyandyouknowit Wed 12-Feb-14 14:24:02

Does your local Carers Centre support parent carers of children with disabilities (not all do), might be worth asking if they can offer any support?

IAmNotAPrincessIAmAKahleesi Wed 12-Feb-14 14:24:20

Can you use some of the dla money to pay for respite?

WaitMonkey Wed 12-Feb-14 14:24:30

I remember your previous threads. Unfortunately there are many people in similar circumstances these day's. There just isn't the funding, must make life very difficult. thanks

ginmakesitallok Wed 12-Feb-14 14:24:52

Have you tried your local carers centre? Ours can provide some respite for carers where the cared for person isnt receiving sw services

OHforsSUCKSfake Wed 12-Feb-14 14:25:02

Im going to sound pretty useless/clueless so I appologise in advance blush

What is the difference between respite and childcare?

For example, if 3 kids are in school (or all 3 will be soon) could you not use the DLA to get the smallest one to a childminder/in nursery?

Would that give you respite?

Edenviolet Wed 12-Feb-14 14:25:31

There is a local carers centre I will try them.

Just feel really let down, went through lots of appts had to fill in a lot of forms, go through all our financial stuff, sw had to meet members of our families, we went to meetings and for nothing. No help at all.

ifyourehoppyandyouknowit Wed 12-Feb-14 14:26:50

Can I ask what area you are in hedgehog?

Stinklebell Wed 12-Feb-14 14:26:56

Also, would you be eligible for an Advocate if your having problems with Social Services? I've used NYAS - www.nyas.net

Purplepoodle Wed 12-Feb-14 14:27:55

Im so sorry your in this position. I can't offer any advice as I don't know much about this but found this on the web

http://www.nhs.uk/CarersDirect/guide/assessments/Pages/Carersassessments.aspx

Gladvent Wed 12-Feb-14 14:29:40

I'd try your local MP, you have tried so many avenues already and there must be something that can be changed so you get some help.

Edenviolet Wed 12-Feb-14 14:30:20

Nw London

I'm hoping to get ds2 ( our youngest) into a pre school soon, even if its just one morning a week to start.

I just had hoped maybe there was a group or scheme similar to home start or some support with getting dd2 a statement but it seems like all doors are firmly closed.

It just seems so pointless to have gone through all the assessment process, paperwork and meetings for nothing. It was time consuming, stressful etc for nothing.

PurpleRayne Wed 12-Feb-14 14:30:38

Carer's assessment - you are entitled to one, ask for it.

gobbynorthernbird Wed 12-Feb-14 14:30:51

Is most of the DCs DLA still being spent on your husband's car?

Owllady Wed 12-Feb-14 14:33:51

That can't be right?
Have you seen the eligibility criteria fir the children with disabilities team?
You must fit it. It really is not just for lds, cos weirdly when you have a child with lds they pull the pd line...
Where do you live?

I had he'll of a game when I moved here. Nothing was done until my gp wrote a very strong letter. After not being able to help for years, they rang the next day and reassessed. I also got my no involved too, they have a legal team that will help you

Edenviolet Wed 12-Feb-14 14:34:47

Our income also consists of ctc and dh wages as well as dla.

It all goes into my account.

Out of which we pay for the FAMILY CAR. The car that is big enough for all four dcs, a double buggy, sometimes a wheelchair and all the medication we have to carry. Its the car that is used to take dcs to school each morning and the one used to take them to hospital sometimes in the middle of night etc.

Dh does use it to get to and from work as well that's true but we are not 'using dcs dla to pay for dh car'

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