Suzy was 10 years 4 months and her Statement of Special Educational Needs specified that she should attend a day special school which in reality catered for a mixed range of difficulties including ASD and behavioural difficulties. Suzy was also receiving emergency respite care and 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 5 nights a week and spent 2 days with her family at home. The LA had carried out a Core Assessment and acknowledged the unusually high level of support that Suzy required and the impossibility of her mother meeting her needs.
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 which 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 6 months old but this deteriorated to a severe and profound hearing loss when she was 2 years old. Suzy had dual sensory impairment associated with her diagnosis of Infantile Refsums Disease and had a cochlear implant at the age of 7 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 9 years old and she was fed all fluids, medication, extra calories and food substitutes through this tube.
- Being a wheel chair user and needing 2:1 support for all transitions and handling.
- Being unable to communicate but Suzy understood some body 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.
Given the extent of Suzy’s difficulties it was not easy for her mother to find an appropriate school placement. However a specialist independent school providing 52 week residential provision was identified – Chailey Heritage School which assessed Suzy and concluded that she would require 1:1 support at all times without which 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 that the school offered an appropriate peer group where Suzy would be safe, MSI qualified teachers were onsite, the curriculum was sensory based and had excellent onsite therapies including OT, SALT and hydrotherapy facilities in one environment therefore meaning there would be very few transitions and little car transport which in the past had unsettled Suzy. The school also provided easy access to a strong medical team.
The LA issued Suzy’s Statement naming a day special school and an appeal was lodged seeking amendments to Parts 2, 3 and 4 to Suzy’s Statement including the naming of Chailey Heritage on a 52 week placement. 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 that 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 felt that 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 with primarily extremely challenging behaviour and the provision was not 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.
We had hoped that the case would settle and that the LA 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 to a SEND Tribunal hearing seeking to have Chailey Heritage named and seeking amendments to Suzy’s Statement 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 and the LA were ordered to amend Suzy’s Statement 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 and the Tribunal could and should take into account costings in respect of care and that her medical, educational and social needs were totally interconnected. Given that her 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 has been attending Chailey Heritage since September 2011 and is reported to have settled well and her mum feels that her difficulties are being addressed properly.