long term sick children

[AGujiMum]

Hi All,

This is my first post and I'm not sure If it will help.

I'm at a loss as to how to help my daughter she has a long term illness but no diagnosis as yet. Its not a life threatening illness but a very dibilitating one.

She has been off school for over 6 Months and only making it into school for 3-4 hours a week.

Can anyone point me in the direction to get her some more educational support? currently trying to study GCSE and is on the G & T register.

What help is available from the local authority. Grants etc.

Thanks

i dont know abt grants but i do know you can see whoever is your DD's specialist and there is a form ive had one for my DS to fill out if shes medically unfit to go to school to get her a home tutor i heard a friend b4 had this for her son who couldnt go out at all and they helped him still sit his GCSE's

Have you claimed DLA and Carers Allowance? That might help moneywise to fund private tutors if you chose.

I believe if she can't attend school the LEA do have to provide a tutor for her - normally they provide 5 hours a week.

But that's just what I've learnt on here. I have no more experience of it than that .....

thats prob the minimum my son had 2 hrs a day she was fantastic came from a company called the complete works a charity the local council deal with their patron was the actor Art Malik

Hi - if she is unable to attend, for a period ofmore than 15 due to ill health then she is entitled to support at home.

Info here

The link editedfirclarity gave is key to knowing what your rights are. If you are unlucky your lea will try to fob you off with only 5hrs per week which is the statutory minimum. However the only restraints should be those imposed by your child's ill-health so if your dd's consultant recommends she can cope with more you should be able to ask for more. Children who are off school with medical needs are entitled to access to a "broad and balanced curriculum" similar to what they would receive in school.

You should be able to get info on the children out of school service from senco or education welfare officer.

My D has side effects of the medication and stomach problems so has dizzy spells and diarrohea aside from the constant stomach cramping. so while she is able to some extent attend school sometimes we are not comfortable sending her in.

At 13 having an "accident" can cause more trauma and the school will not take responsibility if she falls due to dizzziness, but they are keen to get her in if we sign a disclaimer.

I'm not sure what to do?

Thanks editedforclarity iwill do some serious reading this weekend.

Thanks all for your prompt support,

I got a much better response that i expected.

Its very difficult that while the docs say its nothing serious wait and see my d's in pain and missing a big chunk of crucial education.

We have seen a phychologist and are looking into alternatiive therapies too.

Thanks again.

My DD was admitted to the royal free which have a hospital school. Having spoken to the teachers, at the Royal Free, most education authority's have a policy the LBR one states that if a child is absent from school from for more that 15 days in a row then the education authority must provide home education support. this means a minimum of 5 hours a week. you will probably need a consultant's letter stating your child is too ill to attend school but this should be enough to get some help. YOu will need to push for your childs rights. My DD school never mentioned anything eventhough she had missed months at a time.

If you feel she could atend school, would it be safer for her if she was to use a wheelchair to get around, and therefopre reduce the risk of falling?

Completely understand your concerns re her other 'accidents'. This I would imagine would be very distressing and traumatic for a 13 year old.

Sorry not much help otherwise. Hope your daughter feels better and that you can access good educational support for her.

xxx

P.S.: Something to consider, which I hope doesn't transpire is: She is on the G & T register. If things continue and she does not manage to achieve her gcse's due to the lack of support regards her education, get her to get legal advice and sue them for failing her educationally and therefore limiting her life chances in relation to employment etc. Maybe if you let them know she will go down this route if that hapens, they will be more inclined to provide more appropriate support now.

They say ignorance is no defence when you're breaking the law. The same should apply when schools and leas fail to follow statutory guidance. We also experienced blatant disregard for the guidance which states the support offered should only be constrained by the child's medical needs - ie how much they can cope with, whereas the minimum 5 hours per week offered as standard is presented as all that the child is entitled to. I only found this out by extensive research throwing up the relevant guidance. I'm still investigating whether this amounts to contravention of the disability discrimination act but I suspect the comparison may be whether they are treated worse than other sick children who are not disabled. There may still be comeback via judicial review for failing to follow statutory guidance - perhaps other posters have experience or knowledge about going down this route?

I'm glad to hear your dd is now gettign support via the hospital school - do you feel thelevel of support she is now getting is adequate?