KLS Support UK - Helping families affected by Kleine-Levin Syndrome

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Secondary School

Kleine-Levin Syndrome can seem devastating to a young person and their family because it mostly strikes at a crucial time in a young persons life, namely GCSE and A' level study and exam time. Former 'A' grade children are often suddenly described as school phobic or lazy although between episodes they work harder than ever to try to catch up. Most of us KLS parents have had our children described this way and our motives questioned too. A diagnosis will help considerably. Although none of us wish to have our child 'labelled', being able to explain the illness is often the first step to getting further help. Due to the cyclical nature of the illness it can wreak havoc with education although some children do manage to keep up during their out of episode times, sadly this is not the case for some. It can feel like being trapped in a no win situation for the child and their family.

Other groups have worked diligently in the area of special needs and have been around for much longer than KLS Support UK so we will point you in the right direction for help. One us will of course be here to talk to should you wish. We are not trained counsellors but hopefully will have some experience of your problem or will aim to find an answer. We all have/have had children with KLS so have some experience of schooling (private and state)/further education with a KLS child. Contact us here and one of will get back to you as soon as possible.

Department for Education have produced a letter titled

Dear Parents 1 September 2014


It can be found here

Please take a look at
Helpful Links and scroll down to the Education section.
which includes schooling links for England, Scotland, Wales and Northern Ireland, home education and help and information on special educational needs.

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Further Education.

One of us has a KLS child heading to University, one at University now and one who has graduated from University. This shows that one should never give up hope....KLS children can and will get there in the end but it may be a few years later than their peer group in some cases.

For students with KLS applying to University there is a Disabled Students' Allowance which is a supplementary allowance to the student loan. There are links for DSA information for England, Scotland, Northern Ireland and Wales in Helpful Links under Further Education, Finance. The allowance is provided in the form of hardware, support and some specified things can usually be claimed back at the end of the year and are agreed in the assesment. It is best to apply as early as possible and see the assessor early too since it can get very busy later in the summer near to enrolment. The assessment is to decide the individuals needs and how much support will be needed to be given by the University. The DSA can fund mentoring etc. through the University so there will be an interview with Student Service/Enabling Services at the Uni too to see how they can help. It is best to let the University Accommodation Services know about KLS since a room with an en-suite and near to lectures is usually essential. It has been known for the difference in cost between a standard room and en-suite to have been paid back at the end of the year as agreed at the assessment for DSA. Make sure that the KLS sufferer asks for what they need at the assessment because it will be determined then. We know from experience that many young people do not even want to admit they have KLS let alone talk about their needs but it is essential that their needs are known, it is much easier to have things in place just in case than have to deal with problems while in an episode. All of those people are there to help.

UCAS recommend

If you have a disability or specific learning difficulty, we suggest that you contact individual universities or colleges before submitting your UCAS application to discuss the support you may need. When you apply, you'll be asked if you have any disabilities - you don't have to disclose your disability but we suggest you do, because it gives the universities time to prepare.

Changes to the DSA delayed, council for disabled children information 12/09/2014

Link here

Funding higher education for disabled students 2014/15 - Disability Rights UK Factsheet F33

link here

Please make contact using KLS Support UK's Contact Us form. Thank you.

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