Mum recounts fight to have son given specialist support

A mum has described her family’s torment over a fight to have her young disabled son given the educational support he needs.

Nicola Sayer’s four-year-old son Phoenix was born prematurely and suffered from health complications, only taking his first steps just before his third birthday.

As well as global development delay, Phoenix is non-verbal, and has sensory problems including difficulty with solid food. He also has mobility issues and needs an adult to physically support him when walking. According to doctors, he has the same level of development as a child under 12 months.

Nicola, 42, was told by medical experts he would need to attend a specialist school, but to do so would need an education, health and care plan (EHCP) – a legal document which describes a child’s special educational needs and the support they require.

But this is where she said their struggles with Cheshire West and Chester Council’s special educational needs (SEN) team began.

Last April, Nicola said she requested an assessment which would lay the foundations for being granted an EHCP, but faced severe delays.

She said, “The local authority was legally obliged to have completed this entire process by the end of August 2023. That is their statutory time frame. But it took nine months for Phoenix to get an EHCP instead of the statutory 20 weeks.”

But once the EHCP was put together, Nicola was shocked to find that instead of a specialist school, Phoenix was instead recommended to attend resourced provision – specialist support but delivered in a mainstream school.

She said, “Despite all professionals and us as parents recognising that Phoenix needs a specialist school, the special educational needs team panel – a group of people who have never met my son – recommended a resourced provision for him.

“We were devastated.

“At a specialist school, Phoenix would have access to therapy he requires, such as on-site physiotherapy, access to a swimming pool to build his strength, on-site speech and language therapists and continence support.

“In a resourced provision, the aim is that children will work towards integrating into a mainstream class. This would be so detrimental to Phoenix, who cannot cope in busy, noisy environments and who needs specialist care.”

From then on, she said it became a case of ‘to-ing and fro-ing’ with the SEN team.

Nicola, from Upton, said, “It is hard to describe how stressful this period in our lives was.

“We were very scared – scared a system that should be supporting my son seemed so set on misrepresenting his needs, scared our son was going to be shoved into a school that was going to be traumatic for him, scared we’d have to go to a tribunal we didn’t have the financial resources or emotional energy for.”

She added the experience “changed her as a person”, from a happy, confident and outgoing person to someone who was ill, withdrawn and could not sleep.

She said, “As a parent, I knew what my son needed and my wishes were being disregarded because of the decision a panel of strangers had arrived at, professionals who had never met my son.”

Nicola said, in the end, both resourced provisions the SEN team consulted with said they could not meet Phoenix’s needs, and he was allocated a specialist school he needed.

She said, “Although this tale has a positive outcome this happened in spite of the SEN team, not because of them. Looking back, I am furious that, at such a vulnerable point in our journey as parents and at a key point in my son’s life, we were treated this way.”

Nicola said she will be supporting a demonstration by CWaC SEND Accountability – a group recently set up by parents from across the borough who are campaigning for more support for children with special educational needs and disabilities.

The group is planning a protest outside Cheshire West and Chester’s HQ at The Portal in Ellesmere Port on April 30, from 10.30am to 1.30pm.

Cheshire West and Chester Council will not comment due to local government elections pre-election restrictions, but a previous response stated that a group of lead council members, officers and the chair of the Parent Carer Forum had met with representatives of the CWaC SEND Accountability group and were currently planning further face-to-face meetings to provide responses and actions to address concerns raised.

Image: Nicola Sayer and son Phoenix

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