Gary Staerck is a parent of three daughters. He is a founding member of the REPAIR (Edinburgh) Network www.linktr.ee/repair.edinburgh and is also on the Board of Tailor Ed Foundation.
Formerly a theatre and events professional and now a full-time carer for his family and an ASN advocate. Gary has also written two books of poetry and short works inspired by his life journey. His books Back to our Future and It’s not really about a shirt are available on Amazon.
This is the second in a aseries of three articles in which he blows the lid off what it is like living with children with Additional Support Needs (ASN).
Around 47 percent of our school population in the City of Edinburgh have an additional support need.
So how have the numbers got so high? Let’s have a look at the common questions I get asked or things I hear people say.
Is there something in the water? You didn’t have these things in my day. Have you tried changing their diet? It’s just down to parenting. Is it not just laziness from the parents?
Well, if we were watching QI, the klaxon would be firing on all cylinders. Its not about diet, drinks, or parenting and of course additional support needs have been around for a long time. However previous generations either didn’t know what to do or were embarrassed. Those with more profound needs were sent away to private hospitals or care homes.
This stigma still lingers today. Sticking with the QI theme, its general ignorance that leads us to that misrepresentation. There is a huge amount of information out there on Additional Support Needs (ASN) or SEND in England (Special Educational Needs and Disabilities) SEN in Northern Ireland (Special Educational Needs) and ALN in Wales (Additional Learning Needs). So, it’s not the lack of information that is the problem, it’s the lack of understanding and sometimes the lack of desire to find out more.
An additional support need is where a child or young person is not able to learn due to a barrier, such as:
- having a disability or health issue
- difficult family or care circumstances
- struggling with learning or environment
- having social or emotional issues.
Children and young people can have an additional support need at any time. Being identified as having an ASN does not necessarily mean they will need that support for the rest of their time at school.
Your child might have an additional support need if they have any of the above and are struggling with their learning. This is not an exhaustive list but should give you an idea as to why the numbers are so high.
It could be disability or health needs such as having a hearing impairment, recovering in hospital, using a mobility aid such as a wheelchair or crutches, have an asthma or an allergy, speech and language difficulties or a neurodiversity such as Autism, Tourette syndrome or ADHD (Attention Deficit Hyperactivity Disorder)
Care or family needs could include family separation, being young carers, care experienced children, school age parenting or bereavement of close family.
Learning support needs include English as an Additional Language (EAL), Dyslexia, Intellectual disability (sometimes known as Learning disability) or learning at a slower (or indeed faster) pace than other learners.
Emotional and Social needs might include, behavioural difficulties, struggling to make friends, bullying, substance abuse (personal or at home) or risk of exclusion.
The Scottish government and schools use an information management system called SEEMiS that holds all pupil information. In fact, SEEMiS has 23 Categories of Additional Support Needs and additionally an undisclosed and other category.
This doesn’t answer the question as to why numbers are rising. Let’s have a look at that.
Rising birth rates would be a logical reason for an increase but the rise of the identification or diagnosis of conditions such as ASD (Autism Spectrum Disorder), ADHD could be accredited with a percentage of the increase. Displaced populations leads to the increase of English as an additional language support and this is significant proportion of the ASN population rise.
So why are more children getting a diagnosis? Is it just a quick way to get extra help? Is it not just putting a label on your child?
The guidance states that schools should support the need not the diagnosis. However, it can be hard to attribute the need to more than a behavioural issue without the diagnosis to back it up. Outside school, additional support is needed too and a diagnosis is needed for this as well. For example, a diagnosis of Autism can allow you extra support if you go to a job or university interview. In school an Identification of Dyslexia will allow extra support in examinations i.e. extra time, breaks or a prompt.
Getting a diagnosis is just labelling children, could you tell me otherwise? Is it not just a quick way to get extra help.
Getting a diagnosis is not labelling your child, diagnosis helps to open the doors to the support.
Its not a quick journey to get an identification of dyslexia or diagnosis of Autism or ADHD.
My eldest’s dyslexia identification took four years of monitoring and assessing in class to be complete. My youngest started the Autism journey age 4 and was diagnosed two years later. ADHD traits were identified at that stage too but we had to wait until she was eight to get her referred to CAMHS, a process that took about a year to be accepted. CAMHS (Children and Adolescent Mental Health Service) rejected the original referral from the paediatrician. We had to pull together a case and get it resubmitted. Finally, once accepted it was another few months before an initial appointment. From there she went onto the neurodevelopmental waiting list. A waiting list that is 4 years long. From beginning to end of the neurodevelopmental journey could be as long as ten years.
So, bear in mind, when you hear that 91.5% of patients start treatment from CAMHS in 18 weeks, that is to the initial appointment not to start the assessment process. After four years wait, the assessment process can take about 6 months and then if medication is required you could be 2 years or longer before you can see the dedicated medical team for that.
How do we make education work for all children?
There are some supports that are more individual that we have mentioned but some supports work for all children and don’t disrupt. For example, starting school later is being tabled in some European countries, in Scandinavia it is not uncommon for schools to have movement breaks every hour for all pupils. Smaller class sizes and more support teachers are proven options to help all but this comes down to budget.
Budget is always the biggest barrier perhaps it is the biggest ASN of them all.
Sign up here for the online Town Hall meeting organised by REPAIR on 26 February at 7pm.
