Kim Johnson comments on why we must fight to ensure families continue to have access to the proper diagnostic and ongoing SEN support they need.

I have worked for nearly forty years with young people who have Special Educational Needs in England and abroad. Lack of funding and strategic expertise in some Local Authorities has meant that it has never been an easy journey but I can’t recall a time when SEND students have been this far down the political agenda.

I recently read the very worrying story of a group of NHS commissioners in South West London who are considering proposals to reduce the number of children being diagnosed with autism.

As the National Autistic Society says, an autism diagnosis can be life changing. It is totally unfair to make it harder to get a diagnosis purely because local authority budgets are so stretched.

With waiting times as high as ten months many families are already facing unacceptably long waits for the help they need. Making diagnosis even harder to come by will certainly make a bad situation worse for lots of children and young people with a legitimate need for extra support.

In some of the Local Authorities I have worked in I have been staggered by the resistance of some officials to believe that such children and young adults are worthy of attention. Everyone realises that public service budgets are being slashed, but this is no excuse for denying treatment and support to the families that need it the most.

High profile Autism campaigners like Carrie Grant have said that they are worried that the approach being taken in South West London is being mirrored elsewhere in the country. In some cases a lack of a diagnosis will not merely be life-changing but life-threatening. It is not beyond probability that young people with nowhere else to turn when a diagnosis is denied to them will attempt to take their own lives. Visit any parent support group and they will tell you that pretty much all the teens and even some as young as nine are experiencing incredibly extreme behaviours.

Imagine how it must feel to be a parent who has struggled to access diagnostic support for your child. The thought of there being no door to push on for some parents leaves me feeling only despair. We should not be returning to a world that says "until your needs are severe enough, we won't intervene or help you". This is a deficit model of support which is morally, ethically and clinically wrong.

In last year’s Education For All White Paper, the government failed to make any references to children and young people with SEND. The 2017 Conservative Party manifesto once again ignored this section of our society.  I am left wondering just what we have to do in this education sector to warrant a mention.

My Specialist SEN Academy has just been cited Outstanding in every aspect of its performance, despite underfunding by the LA of £640k. The students prosper and have an ever increasing sense of achievement, self-belief and worthiness as future citizens.

One such student performed in a musical session with Brian May of Queen playing on his guitar. He told her that her voice was good enough to pursue a singing career. Her ability had always been there, but her withdrawn and shy manner in a mainstream setting had meant that she had not realised her potential.

I’ve seen her grow in confidence and achieve in a range of learning and social settings. She is now pursuing a training course at college to be a Teaching Assistant for children with autism and learning difficulties. Turning points like these are precious, but they should not be rare.

Increasingly we are finding that many young people are being referred to us for their Post 16 education having had a disappointing time in mainstream non-selective settings. We have helped so many students this way that I wish we’d been able to help them earlier on in their school careers. Imagine how they might have progressed if their diagnoses had meant we could have taught them from Year 7.

Schools like mine, I believe, have a responsibility to offer their expertise to mainstream schools to help them meet the needs of their SEND students.

The responsibility of the government could start with a condemnation of any proposals to make it harder for families to access the diagnosis and support they need. Fully and fairly funding the education system is another no-brainer because funding cuts will only harm the most vulnerable. Another step forward would be a designated Minister for Mental Health, Learning Disabilities and Autism.

Young people with special needs need powerful voices to stand up for them, to be their advocates and to guarantee that their lives are always viewed as just as important as any other.

About the author:

Kim Johnson is immediate past president of NAHT, having held the position of NAHT president for 2016-17. Kim has almost four decades’ teaching experience, including in mainstream and special school day/residential settings.  He is principal of Bradfields Specialist SEN Academy in Chatham, Kent, offering day provision for 300 students in the 4-19 age range with complex learning difficulties and disabilities.