Llandau Kleffner Syndrome, email update regarding this being out of remit

18/12/25

Hi all,

 Following recent contact with a parent whose child has Landau‑Kleffner Syndrome, Anushri has advised that this sits outside our area of expertise and therefore we’re not best placed to provide casework support.

 She has outlined the reasons below in case this is helpful.

 It looks like with Llandau-Kleffer Syndrome, that the main symptom is a loss of language skills that can be mistaken for deafness. My opinion would be that a child needs to have a measurable level of deafness for us to be able to support. However, I can see that this child uses BSL, attends a deaf school, and identifies as deaf – but I suspect this is because the family have to make use of the existing structures for deaf children as there isn’t anything else available to support their child. 

 

There are central types of deafness where the auditory cortex can be affected by e.g. a brain injury or stroke but with Llandau-Kleffer, the area of the brain affected looks to be the language centre. I’m not sure we would have the right expertise to support this family and I’d agree with signposting to other avenues for support. Although this condition is rare and supporting children with this particular syndrome isn’t likely to draw hugely on our resources as a charity, there is a whole world of other language or auditory processing disorders and I would worry that this would blur the lines of our support. Children with central deafness will usually have measurable hearing loss, because some part of their auditory pathway has been affected, so I don’t think we’d be in danger of excluding them. I think measurable deafness is probably the easiest line to draw. 

 

For anyone who’s spoken with the parent recently, I’ll update the constituent record for the parent who has been in touch where the advice differed before. Please continue to signpost parents where possible and, if you receive any queries about why we can’t support in these cases, hopefully the information above will serve as a useful framework.

 

Many thanks,
 Claire