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.

So the next time OP is on here moaning because she can't get the DC to hospital appointments because she can't afford a taxi, what good do you think the car will be doing her then?

This thread is not about the dcs hospital appts or our car??!!

It is about the fact I am unhappy that despite dcs being disabled the children with disabilities team will not take our case on and ss in general cannot offer any support so are just closing our case.

Dcs dla already goes on so many things as I said before we self fund medical equipment, buy special food, taxis etc lots of things.

For the poster who asked all dcs have eds, dd1 also has pectus excavatum, scoliosis and pots, ds1 also suffers from severe migraines and food allergies, dd2 has t 1 diabetes and ds2 also has pectus.

why dont you post on SN board,im sure thats what it is there for,with experienced posters who have loads of experience

And the good our car does us is as follows:

Gets dcs to school
Gets dh to work so that he can earn his wages
Gets us to (some) appts if dh can get time off for them
Gets dcs to hospital if needed in middle of night
Gets us around as a family at weekends if dh is not working.

Its a big family car that can fit all the things in we need,its not as if dh has insisted on a sports car that we can't even get dcs seats in!

To be fair, Hedgehog does post quite frequently about her difficulties in getting her kids to appointments; the car is parked outside her DH's workplace and off limits to her on weekdays.

I will, I was just so angry after the sw phoned me and couldn't believe that cwd team won't take on..... Children with disabilities

I cannot drive anyway,do not have a licence. Yes we have had problems in the past but that wasn't what today's thread was about.

Or should I not be allowed ss help/support/respite because dh drives the car to work??

Hedgehog if a middle of the night emergency dash to hospital is required, it's perfectly acceptable to call an ambulance. That's what most people would do, car owners or not.

Well, you might remember another of my threads ??? Dd2 had a severe hypo, we called 999 and had to wait an hour for the ambulance to arrive.

Since then we just drive as it was touch and go.

Or is it only convenient to remember threads I've started that You can use to criticise me?

Wrong category. All the helpful advice will get lost in the general AIBU stuff. I hope you can get things sorted.

Try Homestart for respite help and any charity directly related to the disabilities your children suffer from. They often have individual funds available for respite care as well as

I would firstly make a complaint to ssd. Sometimes people do fall into the gray areas, but ssd need to choose and allocate a team to work with you. This needs to be done at a higher lever as the indivudual teams won't do it unless they are instructed from above. So go through the complaints procedure. Secondly, I would contact your local MP explain whats been happening, and ask him to take this up on your behalf. Do this at the same time as making to written complaint. This should get you some results.

Hedgehog, I might not be as fluffy as some of the other posters, but time and time again you reject the advice given to you. We can all see that you are at the end of your tether, but I do feel that your circumstances need looking at as a whole.
So, for example, a cheaper car would free up some cash for a bit of help. Or save you worrying about appointments. Or any number of things that would make your life easier.

But what happens if you need to get to hospital whilst your dh is working? If you can't drive surely you would just have to call ambulance

I understand need for respite, truely ( have sister with Down syndrome, and know many families with children with additional needs)

However. I you really need respite and can't get for free, something has to give. The car. Your dh uses for appointments and emergencies I understand, but mainly for work. If emergency happens in the day he isn't there so you will call 999. If one happens and he is there you could just do the same. Sure a car is easier at weekends, but maybe just reduce distance travelled for a while whilst you save.

I understand you have lots of children with diff needs but if your really honest most are at school some of the time or nursery, and some ie food allergies aren't the 24/7 care that many parents have to give. Once your children are in bed you aren't taking turns with dh giving 24/7 care.
It might be harsh but when the government money pot is only x amount it has to be for those who really really need it. Ie ours friends have a child who is paraplegic and severely epileptic, a combination that means he cannot be left alone at all. Someone watches him 24 hrs a day. Even then they only get one night respite a week were a nurse watches him and medicates 7pm-7am on a wed night only. The resource pot is small and unfortunately can't spread out. Yes ideally you would get some help but as it is use the nursery and school time wisely to rest and recover

Can I ask, Hedgehog80, have you posted about having problems with your husband's family? They owe you cash?

I do not ignore advice.

I recently posted about dds problems and was offered advice about applying for a statement which I am in the process of doing.

I posted about financial difficulties and a poster pm me and helped me work out a budget and we went through finances, I was given v good advice which I am following.

It was suggested I learn to drive and I have been looking into grants to do so.

Dd1 needs higher rate of dla so I have re applied.

Dh family did in the end repay what they owed, it took years but finally got repaid.

Our dcs have many health issues and cannot be left unsupervised, dd1 is 12 and cannot even bath alone, they are all very unwell and we are constantly attending to their needs.
If they need to go to hospital during the day I either get a taxi or phone 999 but the last time we did it took an hour.

Food allergies are just part of the problems, obviously not a 24/7 thing but combined with everything else with four dcs and dh and I having our own health issues it is a 24/7 job.

Dcs do not sleep at night we a up constantly with them. Last night ds2 went to sleep at 2.30 am, dd1 woke at 3am, dd2 at 4.15 am having a hypo it is never ending.

And Dh's familiy?

They repaid in the end.

I really think you should look again at the child in need eligibility - can you get support from a local organisation to challenge the need for learning disabilities? I'm sure LAs can't have blanket policies in place. And yes, look at a carers assessment.
But it's tough. We applied to young carers a year ago; no response so far and camhs are still stalking on an appointment for ds, a year after referral.

I am trying very hard to get a statement for dd2. Have not heard yet if they will even assess her. The LA said they wouldn't but I have applied anyway and sent in supporting evidence and a strongly worded letter from her pre school manager as they have to offer 1:1 with o extra funding to do so.

Hi hedgehog

I know life is very tough for you right now. After reading the thread I don't really see anyone having a go at you. What I do see is a lot of frustrated people including you. I have read many of your threads the last few weeks. There have been threads where you want more help from DH, that he works too much. So posters advised you to look at him giving up work and supporting you to take care of the kids. Then you said no he needs work it is good for him. Then you were saying the car costs loads and he is not always available to take the kids to app or school or in an emergency (like when your sister had to help when your eldest collapsed in the street) So posters said get rid of the car or learn to drive. You again said non of this was possible. Now you are saying the car is important and DH is always available.

I am not saying this to have a dig at you honestly. I am trying to say that every time you post and are given advice it is the wrong advice for that time, it is deemed by you as impossible or you change the circumstances.

I think it is about time you look at what you can change and what you can do, not what you can't have or what ss won't help with.

After everything you have tried to get help with it is currently not been given. It is now time to change it for yourself because if you sit around waiting for ss to give you the support you need you will be constantly going in this terrible circle.
I agree that you should accept ss decision but while you are working on getting them to change their policies you and dh need to be sorting out what you can do in the now.

I hope you get the help you need and that your situation improves soon.

you should NOT accept ss decision

Missed out the not!

Likewise when I have said I want dh to give up work to be a carer for dcs the majority of posters have said he shouldn't.... Then I think ok, maybe he should keep trying to work and the majority of posters then say no, he should care for dcs as well.

I did not say he was always available now- I said he uses the car for appts when he can get the time off work.

What you don't see is the changes I make in between posting threads as I have listed above, I have taken advice and I have made some changes. Our circumstances are so difficult that I am however limited in what I can actually do. I have done all I can now, I was really just hoping that ss would come up with some solutions to things we can't do ourselves.