Tribunal rules on care for vulnerable Caernarfon schoolboy

Hari Jones has X-linked myotubular myopathy, a rare condition severely affecting his muscle development, which means he requires supervision at all times and is unable to function independently.

But an Upper Tribunal judge found that core medical care for him cannot be treated as “additional learning provision” under Wales’ education law.

This followed Gwynedd Council issuing an “individual development plan” in Hari’s case; a decision which Hari’s parents, Ellen and Michael, appealed against to the Education Tribunal for Wales.

In turn, the council then appealed the Education Tribunal for Wales’ ruling that “Hari shall be supported at school at all times by two suitably qualified and trained carers”.

Hari, who was diagnosed with his condition at birth, is unable to breathe independently, and relies on others for needs including feeding and personal hygiene.

His condition has been stable since a tracheostomy was fitted and a community care package put in place at Aldey Hey Children’s Hospital in Liverpool.

The care plan stated that Hari he requires a competent carer, and a second responsible adult who is “trache-aware”.

Since September 2023, he has been cared for at home, where he lives with his father, who also has serious medical issues, as well as his older sister and mother.

Mrs Jones commenced legal proceedings against the council and Betsi Cadwaladr University Health Board (BCUHB) in December 2024 after she found the level of care being given to Hari “insufficient”.

Both authorities then made a joint offer, proposing a phased return to school for Hari, with a competent carer provided by the health board and a second, “trache-aware” carer funded by the council to accompany him to school, with that person being eventually replaced by a school assistant who had been trained to be “trache-aware”.

Hari’s mother then withdrew from legal proceedings, but subsequently appealed against the individual development plan arranged for Hari in March 2025.

This followed an occupational therapist, Rhiannon Stokes, assessing Hari, forming the view that the main reason for Hari not attending school was that “he does not have the suitable support in place to provide the care he requires at school,” and that, in her view, “if Hari had a suitable care package at home then the care staff could accompany him to school and provide the care”.

The Education Tribunal for Wales ordered the council to provide two competent carers to supervise Hari at school.

Gwynedd Council’s appeal against this ruling was based on its argument that the tribunal “erred in law” by concluding that the second carer at school should be a competent carer, as opposed to simply a responsible adult who is “trache-aware”.

Sir Gary Hickinbottom, the judge presiding over the Upper Tribunal hearing, found in the council’s favour, but acknowledged: “I am acutely aware that Hari is a particularly vulnerable child.”

He wrote in his judgment: “There was no evidence before the Education Tribunal for Wales panel upon which they could have concluded that Hari’s condition was not stable.

“It has been stable since 2019, and there was/is no evidence of any significant instability (e.g. a medical emergency requiring hospital admission) since then.”

The judge refrained from anonymising Hari in his written reasons, stating that his parents “made it clear that they wished the decision to be open”.

He added: “I have no doubt that, at all times and in all circumstances, Hari’s parents, from the most informed position, have Hari’s best interests in mind; and they clearly consider that anonymising this decision is unnecessary for Hari’s protection and welfare.”

An application to appeal this decision on behalf of Hari’s parents was also refused, as this was deemed to be “academic” and without “any real prospect of success”.