Suffolk dad fears lack of SEND support is harming children’s future
As the new academic year approaches, they've said the lack of provision means anxiety is growing as they don't know what to expect.
A Suffolk father has spoken of the stress and uncertainty his family are facing as the new school year begins, after support for his children with additional needs was suddenly withdrawn.
"It's been very challenging"
Steven Wright, a full-time carer for his two adopted children aged 18 and 15, says the loss of provision has left him anxious about how they will cope in the months ahead.
"From my personal point of view, things have been quite chaotic just lately," he said. "A lot of provisions that are in their (EHCP) plans have been stopped quite suddenly. And so I'm sort of thrown into legal action with the (Suffolk County) council to try and get that provision back. So yes, it has been a very, very challenging time over the summer. I certainly haven't had a chance to relax."
Both children have education, health and care plans (EHCPs), which set out the tailored support they should receive. But Mr Wright says that, ahead of the summer, his son’s tuition was halved.
He explained: "My son should have a certain amount of home tuition or tuition as he's out and about engaging in the community, and half of that was taken away just before the summer."
The siblings live with foetal alcohol syndrome, a condition Mr Wright says creates complex needs. "Children who suffer with it can be very good at certain things, but then really, really struggle at other things," he said. "So it needs an element of training and understanding to deal with."
How lack of provisions is impacting them
Steven told us that the lack of support is already having a negative impact on his childrens progress.
"It's really been devastating for my son. He was doing so well, even though he didn't have all of his provisions in place. What was in place was proven to be very successful.
"He's had a few really difficult years, and we really felt that he was managing to make a lot of progress and now that's all up in the air. Nobody knows what's happening next week, next month. It's caused a huge amount of uncertainty.
"It's undoubtedly set him back quite considerably because he was in the middle of many different projects, even setting up his own little business, but also things to do with driving and gaining independent skills.
"So yeah, it's definitely been a a huge set back for it."
He says it's a similar story for his daughter.
"A couple of years ago, she would have been on track for some GCS ES, but with the disruption over the last year.
"I'm worried that she will have a chance to actually take those again. She's gone backwards in terms of progress.
"And what's really sad is that she didn't really need a huge amount of support, but what she did need, she absolutely needed, and so by not getting that support, which wouldn't have cost that much, it's has had a negative effect. So yeah, it's quite tragic."
Steven says that this is an issue he's seeing with other SEND families.
"I hear this from other familie al the time, obviously some children have highly complex needs and supporting them is very, very expensive, but a huge cohort of children just need a little bit of support at the right time, the right quality, and then they have a chance of thriving. And without that, there's just so much unnecessary suffering."
Time is running out
With EHCPs only running until the age of 25, Mr Wright says the clock is ticking to get the right help in place. "If I can't get the support by then, they'll be on their own, which is… worrying," he said. "There’s so much potential there. A number of very famous people suffer with the condition and go on to be very successful in their lives. But they will have difficulties in certain areas."
He added that the lack of accountability in the system leaves families like his facing huge pressure. "What we're really missing in the system is accountability," he said. "Laws without enforcement are meaningless, aren’t they?"
For Mr Wright, the coming weeks will be dominated by trying to secure the provision his children need but the strain is already being felt. "It has been hugely expensive and stressful," he said. "I don’t really have a choice."
Suffolk County Council has been contacted for comment.