By Gary Staerck, a parent of three daughters. He is a founding member of the REPAIR (Edinburgh) Network 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.
He writes exclusively for The Edinburgh Reporter about his ongoing journey as a parent of children with Additional Support Needs (ASN). This is the first of three articles to be published on consecutive days.
The games we play as ASN parents – to fight or not to fight? That is the question.
A question I find I am asking myself more and more often is “why is this so difficult?” I am talking about advocating for my children with Additional Support Needs (ASN).
Every day seems like a battle and its constant. There is not one single day the same. Information is not easy to find; the information you do find is often out of date and then there is the expansive waiting lists.
My three daughters are Neurodiverse and two of them are currently on the waiting list with Children and Adolescent Mental Health Service (CAMHS).
They joined the neuro-developmental assessment waiting list 18 months ago with a waiting list length of four years. The waiting list has only moved forward seven or eight months in that period. They went on the list when they were eight and probably won’t be seen until they are starting to choose their National 5 Subjects in high school.
My youngest has Anxiety and we had to choose between ADHD assessment and Anxiety treatment for her with CAMHS. You can only be on one list at a time. This feels incredibly messed up to me. What other department in the hospital would make you choose? As an adult you are not made to choose. As an adult if you had an anxiety attack and broke down you could be seen by the GP or by a mental health professional.
This is not the case for a child; you will get given some strategies to try and just play the waiting game. After a particularly bad anxiety attack before being accepted on the waiting list, The GP actually said that they couldn’t expedite a referral to CAMHS unless the child was going to harm themselves or has an eating disorder. The system is broken.
In England they have “Right to choose” where you have the legal right to be assessed for conditions including Autism and ADHD (Attention Deficit Hyperactivity Disorder) by recognised private healthcare providers, all paid for by the NHS. We don’t have this option in Scotland. We could go private and if by luck the diagnosis is recognised, you would still need to join another two-year waiting list for your prescription for medication if you required it as they don’t accept the private doctors’ recommendations. It’s beyond belief. We need the right to choose in Scotland.
Back to my youngest with the anxiety. We have a Child Planning Meeting (CPM) with the school and other professionals once or maybe twice a year. Last year my daughter was really struggling with the anxiety and we requested counselling through the school system. This was denied as only Primary 7s could access this service. We took that as the truth, and I approached the Centre for psychological therapies at the University of Edinburgh. They provide therapy for young people on a donation basis.
The waiting list was approximately nine months.
The waiting continued and it was around the same time that we were approached to accept a place for my daughter at the centre, that I was reading the reports for the Education, Children and Families Committee and found out that Edinburgh’s school counselling service begins at primary 5! How surprising was that?
The explanation from the school was that they prioritise Primary 7s for transition to high school so had no available space as they took priority and they apologised for not being clear enough at the time.
This was the same teaching professional who was very clear that when my daughters go to high school they will not receive anywhere near the support they receive now, probably won’t be eligible for a support base and they currently get a lot more that they would get anywhere else in the city.
Am I grateful? Yes. Am I horrified to be told this? Yes. Am I surprised? No.
So where do you turn next? Answer unknown. Where do you find out if you are eligible for advanced support provision (or base)? Well, you don’t find it on the council webpages, and the Educational Psychologist and inclusion staff can’t recommend you anything. It’s quite a mystery. I asked the question to the education team at the council and the next week I was summoned to the Headmistress’s office to be told how the girls needs weren’t high enough for a Base.
Quite a lot of educational resources are a mystery like this and nothing is common knowledge. For example, towards the end of last year one senior manager at the council told me my daughters should’ve been issued iPads when they received identification of dyslexia in primary four. They didn’t get their devices until Primary six in the standard roll out. In the two intervening years a device would’ve made a huge difference to them but we didn’t know to ask and school didn’t tell.
It’s always the same, we ask for support, we get told no, we push back, we get told they will look into it and then told no, we ask again, get angry and copy in a politician (or advocate) and then support is issued
In November 2024, myself and a few other parents made a deputation to the Education Committee about the lack of consultation with parents and carers over the review of the Inclusion service (formerly ASL Service). We successfully campaigned to pause the proposed changes until proper and thorough consultation had taken place.
In December of that year the same parents formed a small organisation incorporating several WhatsApp communities with a vision to work with the council to make meaningful change through proper engagement, consultation and collaboration with parents and carers. Our company is called The REPAIR (Edinburgh) Network. (Robust Engagement with Parents for ASN and Inclusion Reform.)
To date we have made deputations to council and Education committee. We are meeting regularly with politicians. Our stance is that we don’t want to fight anymore, we want to work together to make change. We don’t work on individual or personal cases and its always for the benefit of all children, not just those with ASN.
There are currently nine of us on the Steering group and its all voluntary. In late February we will be having a “Town Hall” style meeting to help understand what parents want and help shape the direction we travel in.
Is this the answer to all the problems? Not at all but is it going some way towards a solution? Yes. Giving parents and carers of children with ASN a place to air their thoughts safely is a start and helping to feed these views to council officers and elected members in a clear and meaningful manor is key to future engagement and the start of the process to rebuild trust.
https://repairedinburgh.wordpress.com
Sign up here for the online Town Hall meeting organised by REPAIR on 26 February at 7pm.
