To think it is ridiculous there is no help for us

[Edenviolet]

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.

The SW said the CWD team would not take on the case due to dcs having no learning difficulties.

She tried children in need team who said no they don't deal with long term health issues.

Also they are trying to say dd2 cannot have a statement due to no lds

Why are people going on about the car?
The car has nothing to do with a family in crisis with several children who need high level care

DLA is supposed to fund whatever makes your disabled children's lives easier; if respite would benefit you all, spend it on that.

Am I remembering correctly that your dd has diabetes? Why would she qualify for a statement? I'm probably wrong, but I thought they only covered special educational needs?
How would a statement benefit her in school?

Owl, I'm asking because massive financial issues aren't helping to reduce the OP's stress levels. The car (IIRC) costs £3K per year to insure, and that's before the loan repayments. OP can barely afford to take the DC to hospital appointments. Maybe the cash would be better spent on domestic help, or respite care, or a million other things.

Quite a lot of it is already 'spent' each month so there's no a huge amount left to use for respite.

We are self funding medical equipment for dd2 out of it and recently had to get a special bed for dd1 and ds1 due to their problems so realistically it might pay for ds2 to do a couple at most mornings at preschool when he has a place, with older three at school from sep that might help a bit.

Dla is supposed to cover the extra expenses involved with having a child who is disabled. It is not there for respite, nor is enough to cover hose costs anyway

Hedgehog, I don't know where you live, but this is eligibility criteria for one council, it clearly states regarding health
www.bathnes.gov.uk/services/children-young-people-and-families/child-protection/children-need-and-child-protection-ha-1

Yes she has eds and diabetes.

She needs a 1-1 as cannot test herself, treat herself, has no hypo awareness and dislocates joints a lot.

She needs so much help and supervision each day just to stay alive and I need her to have a 1:1

Look at your budget - incomings, outgoings, and see if you can spare any money to pay for a part time carer, even for one morning a week.

It's tough right now, budgets are being slashed left, right and centre.

Actually have you contacted Barnado's? In my area they run a scheme where a mentor trained in special needs will take a child out once a week to help them with socialization, etc. Or Family Fund will fund respite care.

Oh sorry I didn't see your last comments.

www.bathnes.gov.uk/services/children-young-people-and-families/child-protection/children-need-and-child-protection-ha-1

Sorry I forgot to convert the link
I actually don't think hedgehogs financial situation has anything to with this. Most people who find themselves in a situation with children with high level needs suffer financially. It's well documented by Joseph rowntree etc. :(

Definitely visit the carer's centre, asap. They'll be able to tell you what's available locally. Good luck!

It would benefit her in that she would have her blood sugar levels kept under control, avoiding lows which can cause confusion and feeling ill quickly followed (if untreated) by loss of consciousness, seizure, coma or fatality. High blood sugars if left untreated can lead to dka and fatal coma.

Moderately high sugars cause lack of concentration, tearfulness etc and she wouldn't be able to learn properly. That and her pain/fatigue and dislocations means she needs a high level of care.

Sounds grim . How are they managing her at nursery?

It has been very hard with her pre school but they have 24 children in one room and 7 members of staff, 6 of whom are trained to care for her so she can have 1:1 most of the time. She is there for 2.5 hrs each morning and in that time they have to do 2 blood sugar checks, snack, attend to her if her alarm (cgms) goes off and they frequently check the cgms to see what her bg is.

Owl, I appreciate what you're saying, but there is money to help the OP/DCs if the husband stops treating himself to solo holidays, driving an unaffordable car, etc.

Hi OP, I agree you should complain to the Local authority, or go to your MP- I don't know much about children's social services, but if they have identified that you (as a carer) or your children have a need, the LA can't decline to give you support just because you don't fit into the way they have set their teams up (or more accuratey they do use this as an excuse but are not supposed to).

God almighty! She certainly does need some sort of dedicated TA, but I don't know how you're going to manage it. Will she reach the stage of being able to manage it herself when she's a little older?
It must be mentally draining for you

Your situation sounds familiar, does your adult brother live with you? If he does is there a way that you, your DH and your DB could provide each other with a little respite? Could they look after your DC on a Saturday morning, for example, so you could go for a swim, or for some coffee etc?

No, Jumbo, I remember that poster. She had a tiny house, people sleeping in the living room, etc, and she insisted on having one of the bedrooms kept free for use as an office

I would try the family fund. They paid for my driving lessons as I needed to pass my test fast but didn't have enough funds. You could at least check on their website or give them a call or email.

Thanks, Molly. Op hopefully there is someone somewhere who can help you.

No db does not live with us.

I'm hoping in a few years dd2 may be able to do a lot more of her own treatment but she's just too little at the moment and doesn't have a clue what her bg level actually means and can't treat herself

It's a long term idea but could you get her name put forward for a insulin pump? It's helped my friends 7year old dramatically. Good luck with the respite