The family of a 10-year-old girl with a rare genetic condition say they feel like "a number on a list" as they struggle to find her a place at a special school. Rose Wright, from Bengeo in Hertfordshire, has ataxia-telangiectasia (A-T), an inherited disorder that affects her nervous and immune systems.
Her parents, David and Jenna, say she is unable to attend mainstream school due to physical and emotional needs, but have struggled to find her a place in a SEND (special educational needs and disability) school. Rose is on roll at Morgans School in Hertford but has not attended since the end of summer term in 2021
Ms Wright wants her daughter to attend Lonsdale School, a specialist institution that can better deal with her requirements just 20 minutes away in Stevenage. But they face a waiting list up to 12-months long, by which point her parents are not sure she will benefit from an education.
Speaking to HertsLive, Ms Wright said the family feel in a race against time to get Rose into their school of choice as her A-T continues to affect her coordination and increase her risk of serious illness. She said they have been left frustrated and claim Hertfordshire County Council has not provided them with adequate support or services during what has been a challenging time.
“She’s losing her balance, so she can’t walk unaided, it affects her immune system, so she’s quite poorly sometimes", she said. "We always knew a special school was on the cards and we tried to get people to listen to us last April, but there were no SEND officers left. After that, we were then put on the list to be discussed in September. We’ve got in writing that she can’t attend a mainstream school and she needs special provision, and our closest is Lonsdale.
"Since then it's been us contacting them to chase up, they don't contact us. In a couple of years, she won’t benefit from school. They are saying every special needs school is booked. The sad thing is we’re not the only ones in this situation, there’s lots and lots of children."
Hertfordshire County Council said it understands the frustration for Rose's family and is working with Lonsdale to secure a place for her. It added it is increasing its investment into SEND funding. Ms Wright said they have been waiting for answers for months with no suitable solution yet in place. She said: “They say they’re working on it but they don’t get back to us. We said ‘what about now – we’re desperate' and they found a place in Surrey. We were a bit disgusted really."
The family said Rose's current school has been very supportive, even offering the funding back to the council to help provide her with better home education. The Wrights want to see better funding and support for their daughter as well as other SEND children. Many families across the UK have spoken up about long waiting lists, quality of Education Health Care Plans and a lack of available specialist school places.
Ms Wright said: “I’ve been looking myself for school placements but I’m just at a loss because I don’t know what to do for the best. The worst thing is, Rose’s funding is still at her mainstream school and the school said can we give you the funding back to find provision but the council has ignored it."
Ms and Mr Wright work full-time as a children's nurse and travel industry professional respectively. They are concerned that due to Rose's condition she might not get the full experience of school.
“Our frustration is, that we don’t have time – we don’t know how long Rose’s life is and how bad she is going to get", Ms Wright said. "All of the children on the list face this, some can be maintained and managed at a mainstream school but Rose can’t. We feel like we are a number on a list. Nobody really knows about the SEND world, you have to keep explaining yourself and a lot of families just aren’t being heard, it’s just not fair.”
Hertfordshire County Council said it is working directly with Rose's family to secure a place at Lonsdale, which is currently full and working to find a space for her "as soon as possible". More generally, the local authority said it wants "the best possible outcome" for all people with SEND in the county.
A spokesperson said: "We understand the worry and frustration caused to this family and we are doing everything we can to resolve this issue as soon as we possibly can. There is a national shortage of special school places and, in common with many local authorities, we are experiencing an unprecedented level of demand for specialist SEND provision.
“In response, we are significantly increasing our investment into SEND funding in mainstream schools across the county from £9.5m to £17.5m this year. Our Special School Place Planning Strategy 2020-23 sets out our commitment and investment to create over 300 new permanent special school places, and the development of a countywide pattern of specialist resource provision in mainstream schools.”
