Leeds girl, 9, asks 'why am I different?' as family face 20-month council wait

Her parents said their child has been 'neglected' by the council

A Leeds girl with a rare genetic disorder has been “neglected” by Leeds City Council who are taking nearly two years to provide an educational assessment, her parents said.

“Kind and cheeky” nine-year-old Persephone ‘Percy’ Hassall, from Micklefield, has been struggling in school for years without vital provision that would see her progress. Parents Chris Hassall and Christine Casey, 46 and 37, believe she is at the same developmental age of her five-year-old sister, Calliope (Calli).

Percy was diagnosed with DiGeorge syndrome when she was six years old, which has resulted in: deafness, with 75 percent hearing loss in one ear and 25 percent hearing loss in the other; she struggles with speech, making it hard for others to understand her; and she has a ventricular septal defect (a hole in the heart) which means she gets tired quickly during strenuous tasks. Percy was also born with a cleft palate which was fortunately removed with surgery.

Percy is currently in normal classes in her school and last year was put into a reception class, in a class adjacent to Callie, for reading comprehension lessons. Her parents say their “warm and friendly” daughter has been "teased" by other children in her year, who don’t realise the upset they’re causing.

Chris, who works as a floorlayer, said: “It’s distressing and heartbreaking. She isn’t getting invited to parties and she’s asking ‘Why aren’t I being invited?’ She’s starting to notice the differences more now. ‘What’s wrong with me? Why am I different?’”

Alarmed about her progress, Chris and Christine applied to the council for special provision in the form of an Education, Health and Care Plan (EHCP) application in October last year. They added the school aren’t able to provide the support Percy needs.

Despite a psychology assessment being guaranteed only a month later, Percy has been given a provisional date of April to June 2027 to be assessed. The Hassalls only received this date, which comes almost two years after making the initial application, after many months of being “fobbed off” by council staff.

The parents had to make two formal complaints before getting any answers. On Friday, October 16, they demonstrated outside Leeds Town Hall.

Chris said: “She needs to be in a different setting that the EHCP that we’re fighting for will provide. We feel frustrated that every time we pursue an avenue, it seems to meet a closed door. It’s so difficult to actually contact anybody and have a conversation.

“We’re basically getting fobbed off at every turn. We went out on the streets with placards, as pretty much an act of sheer frustration and desperation. We’re just trying to feel like we’re doing something.”

Leeds City Council told the Hassalls there was a national “educational psychologist workforce shortage” causing the delay, in an email in June. Chris claims other children in Percy’s school with less complex educational needs had applied for an EHCP assessment later than them and had already been assessed.

Chris said: “Percy’s teachers who have done their best to support Percy agree her school is not an appropriate setting for. What effect is another nine months going to have on her education and social/mental wellbeing?

“She has been let down by the healthcare system by not being diagnosed until she was six years old, despite numerous visits, treatments to hospitals and doctors who failed to read the indicators. She is now being failed by the education and welfare system. We need answers, please as to why a child with complex needs is being neglected.”

A Leeds City Council spokesperson said: 'It is not appropriate for the council to publicly comment on the circumstances of individual children however, we know that some families have waited too long for their child’s Education, Health and Care assessment, and we recognise the uncertainty this has caused.

“We have invested additional resources to reduce waiting times and complete assessments as quickly as possible, while ensuring children continue to receive support based on their identified needs. The improvements we are making are beginning to reduce waiting times, although we recognise that families continue to experience delays.

“An Education, Health and Care Plan is only one part of the support available to children and young people with special educational needs and disabilities. Schools, health services and council services continue to support children and young people based on their identified needs while assessments are taking place."