complex needs and getting an education

[angelsfly]

Hi i am new to mums net, so if i get the link wrong please advise me?
My daughter is 14 years old and was going to sit her GCSEs this year. Unfortunatly she suffers with Complex regional pain syndrome, which effects mainly her ankles legs and hands. This means she is in constant pain and can on some days make it impossible for her to weight bare at all and use her hands to write. because her condition has deterioated since september she has been unable to attend school. The school which she attends and social services want her to be classified as unfit to attend school in order for her to access home tutoring.
Dispite me highlighting my conserns; that she would be totaly house bound, socialy isolated and cut off from her friends because she lives in a rural area; they took no notice. They could not tell me either how many hours she would be tought. all my daughter requires to get an education is an appropriate wheelchair which the NHS can not supply and we can not afford, someone to help support her in school and someone to teach her at home on the days when she can not weight bare. because this type support is not available in the county of devon, my daughter lays on the sette each day socially isolated cut off from her friends and unable to access an education. Can anyone advise? :)

Hello
I have moved this thread for the OP -
Thanks M Towers

If you move this to SN Children many experienced posters will see it.

Am cooking tea so being quick:

Physical disabilities should not be bar to mainstream school.

The law states that a child should 'receive an education suitable to their age and abilities'.

As the mother of a child who was too ill to attend school while about to sit GCSEs I can tell you that some subjects cannot be taught in the home i.e. science (or rather that's what our LA decided and refused to provide home-tutoring for it).

When a child is too ill to attend school the LA are obliged to provide home tuition, normally about 5 hours per week but more when the child is facing public examinations. The home tutoring should be as much as the child is able to cope with. having said that, you'll probably have a real struggle to get anywhere near the full curriculum taught at home.

She should be at school with the necesary help that would permit her to be. To disbar some one on purely physical disabilities is illegal.

I would write to the LA and also complain to my local coucillor, as well as taking legal advice.

Keep a diary of everyone you speak to and what you were told. It will be useful if you have to take matters further.

IPSEA (google for their website) can also advise.

Thanks WetAugust - have done.

Try whizzkids for the wheelchair help (surely the NHS has to provide her with some sort of chair that is suitable though?).

She should be able to get support for school as well - statemented if need be.

Might also be worth talking to the hospital school - I know people who have found the one at Derriford helpful if you're the Plymouth side of the county (not just when their kids have been ill, but when they've been out of school for other reasons).

And yes to IPSEA.

You could try the charitable organisations like Cauldwell kids?They provide specialist equipement to families who need it.

You shouldnt have to...its a bloody disgrace how your daughter is being treated.

Good luck x

Just an update and thank you to all whom have offered advice. However over the past two years, i have approached CAB for a solicitor no joy to complicated for them to sort out, contacted my local MP; The LEA; Social services,the Health Authority, GP, health visitor, ACE, charities, probably every person you can think of apart from going public and taking her story to a national paper.
We have a meeting at the school next Tuesday,with the head teacher;the school nurse; SENCO; her specialist (pediatrics);social services; her occupational therapist; and the educational welfare officer.
However i have been on the phone today to both the Occupational therapist, the SENCO, Social services and told my daughter will have a wheelchair in the next five weeks, so could they sort out an enabler. i told them she required a person to help her to get to and from school to help out at school with wheelchair assistance, doors; but also she required someone to write for her when her hands are in pain and swollen. And to collect work and go over it with her on the days she is unable to attend.
as soon as i asked for this help they all started to say it was not there responsibility to provide an enabler. one says its social care the other its educational; they continue to pass the buck.
I told them i was sick of them sitting on the fence of what is and is not legal; and if nothing is sorted out in the next meeting; i would be taking my daughter to school myself and stand outside with the press until they find someone to help my daughter get to school and get an education.
if anyone has any advice, which i can use at the meeting please advice me?

However on a positive note a very big thank you to the Boparan charitable trust whom gave us the extra funds we needed for a wheelchair. This means in five weeks time we will be able to get my daughter out of the house for the fist time since last September. She is very happy and very grateful thank you!