“Trying to access special educational needs [SEND] provision for your child has always been a stressful process and hard work for any family, because unfortunately you have to fight the system,” says UNISON member Graeme Stevens.
“But it’s gone from a fight for parents to an absolute war.”
Graeme is a family support worker for the North-East Autism Society (NE-AS). Over the past year, he has been running a campaign to raise awareness about the current crisis in the provision of SEND in the UK, and to influence the government to provide more funding for the sector.
The issue isn’t just one Graeme faces at work, but also in his personal life. He has a 12-year-old son, K, who has autism, ADHD and sensory processing disorder, and a five-year-old stepson, O, with Angelman syndrome, which causes severe physical and learning disabilities.*
Accessing SEND provision – ‘it’s awful’
Graeme joined the NE-AS around seven years ago, when his son, K, around five at the time, was transitioning into primary school.
“K was lucky in that his transition into the school was relatively smooth – compared to now, when everything is full to bursting. There were spaces at the special school, there wasn’t too much of a panic and there was enough provision for the paperwork to be done quickly and correctly. K was also one of the first to get an EHCP.”
An EHCP is an education, health and care plan, similar to what used to be called an educational statement, and is what Graeme calls “the golden ticket” to access to special schools. The three major steps of the process are diagnosis, applying for the EHCP and then actually getting a place at a special school.
“Nowadays you’ve got two-year waiting lists to get a diagnosis, then you’ve got your EHCP process, which is really long because of staffing levels and getting the appropriate professionals on board, then you’ve got to find and get a place in the right school,” Graeme explains.
“There’s pressure on every element of the process. I can sympathise with everyone that we’ve come across in those jobs, they’re obviously very overworked.”
These issues manifested for Graeme and his partner last year when K was transitioning again, this time from primary to secondary school. The local authority had allotted a school which they thought was appropriate for him, but, as Graeme explained, “he had a couple trial days there and it basically fell apart.”
“It was evident it wasn’t the right provision for him. The staff didn’t understand him. So, as parents, we obviously put our foot down and said he can’t go there, and began having fairly high-level conversations with the local authority while frantically looking for other schools.
“Even for an area, like North Tyneside, where you’ve got a decent number of special schools, they were all coming back and saying they were full. So the conversations carried on, and it was really traumatic over the summer. It was into the second or third week of September and we didn’t know what was going on.
“And for K, somebody with autism, it was really difficult in terms of it being unpredictable and not having a plan.”
Eventually Graeme and his partner found an independent SEND school, an option that authorities traditionally don’t like to use because it’s more expensive in terms of funding, but which was a perfect fit for K’s needs.
The couple experienced similar stress and anxiety all over again, when it came time for their youngest, O, to transition between nursery and primary school: a delay in receiving his diagnosis and EHCP, then the council denying a space in a special school before finally backing down.
Graeme reflects on the family experience. “We’ve been lucky with both lads, because eventually both the schools we’ve found are perfect for them. But it does take you a while as a family to recover from the trauma, because it is awful.”
A professional view
Graeme has also seen the same issues from a professional perspective. As a family support worker, he works with families whose children are still living at home.
“So we’ll go and do evening, weekend, school holiday support. That could be anything that the young person wants to do or anything that the family would like them to work on, from leisure activities to work experience, to attending dentist appointments.
“The kids I work with are funded by local authorities, and a lot of the time I am picking them up from schools. You can see the teachers are stressed when handing the kids over – and you can see there’s a lot more kids. Ultimately, you’ve got a workforce that’s incredibly stressed, incredibly overworked and underpaid.”
His personal and professional experiences are what led Graeme to start campaigning on the issue. “I was finding out that this is happening all over the four nations, and there are plenty of people who haven’t been as lucky as we have.
“You’ve got so many SEND children who can’t cope in the schools their local authorities have said are right for them and just aren’t attending.”
Graeme started a petition for the government to fund more specialist school places within SEND, which garnered just under 17,000 signatures, and has been pushing for more media attention to be given to the issue.
When asked why he thinks the situation has become so critical, he says: “Definitely chronic underfunding. For me, it probably all started when they started closing the Sure Start centres.
“Underfunding creates a stressed workforce, then you’ve got more absence through sickness and stress, and you’ve got less expertise because people don’t want to stay in the job and go to work elsewhere.
“We’ve sleepwalked into this, with vulnerable children being left by the wayside.”
Where do we go?
On 2 March this year, the government published the ‘SEND and Alternative Provision Improvement Plan: Right Support, Right Place, Right Time’. The report aims to build a roadmap to fulfilling children’s potential, build parents’ trust and provide financial sustainability in the sector.
However, UNISON and other bodies, including the Local Government Association (LGA), are concerned that the previous reforms to SEND provision, introduced in the Children and Families Act 2014, have failed to improve that provision in any meaningful way.
While the act placed children and young people at the centre of the SEND system, it did not provide sufficient funding or powers to allow councils to effectively meet the needs of those end users.
UNISON notes that the report’s emphasis on “up-skilling” and training in the workforce, while obviously a benefit to both workers and the sector, is not backed up by the level of extra investment required to a) kick start such development and b) recruit and retain the necessary staffing levels.
The LGA has also voiced its concern that £70m funding for the change programme will be “insufficient.”
UNISON national officer, Leigh Powell says: “There is a clear desire to build expertise, capacity and culture throughout the system, but we need to learn the lessons of the 2014 changes.
“Those changes had ambition and were going to change the lives of children and young people with special education needs. They have not worked. And if funding isn’t put into staffing, they won’t work again.”
*Name has been changed for safeguarding purposes.
The experience this parent and young person illustrates is one I have lived along with my daughter. We’ve also faced discrimination behaviour from professionals who are meant to care. The SEND system has been on the decline since the early 2000’s … CAMHS has become a distant hope with the lack of funding and professionals. Schools are reluctant to refer.. meanwhile parents and young people are suffering. Things need to change