Suzy was 10 years 4 months when her parents came to us at Education Lawyers (part of Langley Wellington LLP) Her current Education Health and Care Plan (EHCP) specified she should attend a day specialist school which in reality catered for a mixed range of difficulties including ASD and behavioural difficulties.
At the same time, Suzy was also receiving emergency respite care. She had 1:1 or 2:1 adult support to address her needs and ensure her safety at the respite centre and at school. She stayed in the care setting for five nights a week and spent two days with her family at home. The local authority had carried out a care assessment and acknowledged the unusually high level of support that Suzy required and the impossibility of her mother meeting her needs.
Severe and complex needs require a specialist school
Suzy had particularly severe and complex needs which included:
- Infantile Refsums Disease which is a genetic disease. The condition is life-limiting and degenerative, although some children survive into their late teens and early twenties. The symptoms of Infantile Refsums Disease begin in infancy with visual impairment often leading to blindness; as it had done in Suzy’s case. Hearing problems usually progress to deafness in early childhood and other symptoms can include jerky eye movements, floppy muscle tone and poor motor coordination. Suzy had a mild hearing impairment at six months old but this deteriorated to a severe and profound hearing loss when she was two years old. Suzy had dual sensory impairment associated with her diagnosis of Infantile Refsums Disease and had a cochlear implant at the age of seven-years-old in order to improve her awareness of her environment.
- Hypertonia i.e. decreased muscle tone
- Hepatomegaly i.e. enlargement of the liver
- A seizure disorder. An early EEG identified constant epileptic activity particularly over the front and temporal areas.
- A gastrostomy tube inserted at the age of nine, meaning Suzy was fed all fluids, medication, extra calories and food substitutes through this tube.
- Being a wheelchair user and needing 2:1 support for all transitions and handling.
- Being unable to communicate, although Suzy understood some body-related signs such as “stand”, “sit” and “walk”. She needed a carer with her at all times for daily living such as being fed, dressed, walked and toileted.
A specialist school is found
Given the extent of Suzy’s difficulties, it was not easy for her mother to find an appropriate school placement. However, an independent specialist school was identified, providing 52-week residential provision. Chailey Heritage School assessed Suzy and concluded that she’d need 1:1 support at all times. Without this, she would be unable to develop any skills or understanding. Furthermore, she required 1:1 support for her everyday healthcare needs.
Suzy’s mother believed the specialist school offered an appropriate peer group where Suzy would be safe. Multi-sensory impairment (MSI)-qualified teachers were onsite, the curriculum was sensory-based and had excellent onsite therapies including occupational therapy (OT), speech and language therapy (SaLT)and hydrotherapy facilities in one environment. This meant there would be very few transitions and little car transport, which in the past had left Suzy unsettled. The suitable school also provided easy access to a strong medical team.
The local authority named a day special school…
The LA issued Suzy’s Plan naming a day special school. Suzy’s mother felt that the school named by the LA was not appropriate because it did not have dual sensory impaired qualified teachers on staff and had no other pupils with dual sensory impairment. Suzy’s class had children with mixed difficulties including challenging behaviour who would bite and spit.
Clearly, Suzy was a very vulnerable child. Her mother felt Suzy would not have an appropriate peer group and that Suzy found the travel between home, school and the respite centre very confusing. She also believed the school proposed by the LA would not be able to meet Suzy’s medical needs when her disorder began to progress.
The respite setting offered by the LA was not appropriate either, as this was an emergency facility for children primarily with extremely challenging behaviour. The provision wasn’t set up or equipped to deal with children on a long term basis. The other children at the respite centre were very boisterous and the care setting did not have expertise in dealing with Suzy’s complex medical issues. As a result, she had to be taken home on several occasions.
Education Lawyers support Suzy’s family to appeal
We supported Suzy’s mother to lodge an appeal with the First-Tier SEND Tribunal. We sought amendments to Sections B, F and I of Suzy’s Plan including the naming of Chailey Heritage for a 52-week placement as her specialist school.
We had hoped that the case would settle and the local authority would accept that a day special school and respite care in different settings was not appropriate for Suzy. Unfortunately, despite the merits of the case, Suzy’s mother had to pursue an appeal all the way to a SEND Tribunal hearing, seeking to have Chailey Heritage named and seeking amendments to Suzy’s Plan to reflect her need for the following provision:
- To be taught by specialist teachers of pupils with dual sensory impairment throughout the curriculum.
- To provide a consistent approach to learning across all contexts in a modified, calm and highly structured sensory learning environment.
- Speech and language therapy
- Direct and indirect occupational therapy
- Direct and indirect physiotherapy.
- Close liaison between home, school and care settings to ensure consistency of approach.
- The provision of a full time classroom assistant on a 1:1 basis throughout the entire day with 2:1 support across the board.
The appeal was successful. The LA was ordered to amend Suzy’s Plan to name Chailey Heritage on a 52-week placement. The Tribunal also accepted that in a case such as Suzy’s, education had to be holistic in its nature. The Tribunal decided it could, and should, take into account costings in respect of social care and that her medical, educational and social needs were totally interconnected. Given that Suzy’s condition was progressive, they believed that all professionals working with Suzy throughout the day needed to continuously adapt to her changing abilities and requirements. The Tribunal accepted that a waking-day curriculum was necessary.
Suzy is now attending Chailey Heritage and is reported to have settled well and her mum feels that her difficulties are being addressed properly.
If you’d like to find out more about how we can help your family to secure the educational support your child or young person needs, please get in touch.