Sheffield LEA to fund a place at Robert Ogden PDA hub for Edith

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Please sign this petition to support our daughter, Edith, and other SEND children in Sheffield that are being forced or left out of school due to a lack of suitable and accessible provision.

This is Edith's story...

Our beautiful daughter, aged 10, has a form of Autism called Pathological Demand Avoidance (PDA). People with PDA have difficulties in the areas of social and emotional communication and understanding, although these present very differently to those with more typical Autism Spectrum Disorders (ASD). Key to PDA is the unpinning extreme anxiety, overwhelming need for control and avoidance of even the smallest everyday demands. Strategies used for PDA are very different to those used for ASD’s - in fact, traditional ASD strategies can be damaging for those with PDA. PDA, if not correctly managed, can be debilitating and is often poorly supported by education and health authorities with recognition patchy across the UK (and world).

After years of trying to 'mask' her difficulties, and with no support or understanding from CAMHS or her school, Edith finally let the mask drop in November 2016 when she stopped attending school altogether. After years of managing to perform amazingly well academically and socially (on the surface at least), she was overwhelmed with exhaustion and lost all faith in herself and education. Given the sheer amount of instructions and expectations that she had to deal with on a daily basis with no support or acknowledgement, I am surprised she lasted so long. However, the impact on her mental health from internalising such extreme anxiety has left it's mark.

Since stopping school altogether, Edith has started to recuperate which has enabled her to build a new and positive sense of self. She has achieved so many fabulous things in this time including: making a video on her You Tube channel here to explain what it feels like to be a child with PDA; being interviewed by a PDA public speaker/blogger (which you can read here); fundraising over £1000 for the PDA Society (see her fundraising page here); contributing to a forthcoming publication by Dr Judy Eaton here; and next week she will be speaking on Radio Sheffield about her experience looking for a new school (watch this space!).

Being out of school has also been very difficult for Edith who has felt abandoned and socially isolated. She has missed the stimulation and desperately wants to learn! From the moment she could no longer access mainstream school, we started looking for the right school that would provide the specialised support she deserves while nurturing her creative imagination and entrepreneurial spirit. We were shocked to find that no such provision exists within Sheffield (the 3rd largest city, well according to Wikipedia!) for a highly intelligent child who cannot cope with mainstream school on an emotional and social level, especially for a child with PDA. Sheffield LEA were open about this themselves and suggested we look at private specialist schools and schools out of area, so that is what we did.

We were delighted and relieved to find an amazing school - Robert Ogden School with it's own hub for people with PDA! This would offer Edith a full package of psychological support with 1:1 teaching, her own personal learning space and a completely bespoke curriculum that reacted to her anxiety levels and not the needs of a group of children and planning constraints. We were over the moon when Robert Ogden confirmed that a room in the PDA hub would be free for Edith from September. So it was just the final funding approval from the Local Authority that was required.

Last week we were shocked and upset to hear that the funding request had been refused. The local authority made an alternative offer based on schools we have already explained are not accessible for Edith. They have disregarded her thoughts and feelings, which were submitted to the panel via a video. When we had to tell Edith of the decision her exact words were "it's cruel".  

We are now engaged in a lengthy and VERY costly legal tribunal which may or may not result in funding being agreed. However, it is not just us that Sheffield LEA are failing in this way. Last week I set up a Facebook group to identify just how many other SEND children within Sheffield are being left out of school as a result of lack of provision. Shockingly, the group already has 56 members and more people are joining daily. The experiences people are sharing are beyond belief, especially in the 21st Century. This is a massive problem which is continuing and, if anything, getting worse. It is not just Sheffield but across the UK. This cannot continue to go unquestioned as vulnerable children are being denied their right to an accessible education. Failure to deliver what they are entitled to during such an important developmental stage has big implications for their emotional wellbeing and future lives.

Please sign this petition to support Edith and all the other children out there who are currently being failed.

Thank you!



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