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epilepsy 6 year old- need help re statement

3 replies

harvey45 · 13/08/2013 22:09

Hi, I am new here and need some advice as to how much support we are entitled to at school. Our dd was diagnosed with occipital lobe epilepsy 3 years ago and suffers complex partial seizures, photosensitivity, possible night seizures and maybe absences but not certain of latter. She suffers memory loss after complex partial. She had numerous problems at birth and as well as epilepsy has microcephaly, no 3D vision causing issues with depth perception and body awareness skills, found to have chromosome deletion and as a result being investigated for a form of rheumatoid arthritis auto -immune syndrome. she also has balance issues which has improved in time and now wears orthopaedic shoes with supportive orthotic inserts and has physio at school/home. She often gets tired whilst out walking and uses next size pushchair at these times. Our dd is taking lamotrigine for epilepsy which is not yet under control - she's almost at highest dose and if no improvement they will switch meds I think to Keppra.
School have her under school action plus and has a so called IEP and Care plan - in Foundation they had more 1:1. They have slowly taken this away although they say staff are aware of dd's needs and do keep an eye out for her I know there are times she's been left unsupervised . Because her seizures are not controlled I feel the 1:1 should be made available. Am I asking too much, surely they have a duty of care to dd. What are dd's chances of getting a statement. Has anyone else had a statement issued through epilepsy. Anybody got any advice please

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nennypops · 17/08/2013 11:39

Sounds like you should ask for statutory assessment - there's advice on this on the IPSEA website.

You will probably get more replies if you post this in the Special Needs - Children thread further down the main forum page.

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MrsAVB · 17/08/2013 11:47

Hi harvey. Young epilepsy have a helpline/ text/ email details here, they give advice re. Education among other things.
In my (limited) experience, statements won't necessarily guarantee you more support, and with epilepsy especially - since there are many kinds and different severities - it's more about showing how your Dd's daily functionality is affected by her conditions, rather than based on the condition itself if that makes sense.
Good luck x

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neolara · 17/08/2013 11:49

You need to look on the website of your local authority and find the criteria for statutory assessment. Then you need to see whether she meets the criteria. Criteria for medical needs are often quite wooly so you will need to show that her medical condition has a very significant impact on her life in school (attainment, social relationships, ability to learn, fine and gross motor skills, understanding and use of language etc).

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