Meeting of the Parliament 01 April 2025
I, too, thank Daniel Johnson for securing the debate, which enables us to discuss the implications of not introducing a learning disability, autism and neurodivergence bill timeously and helps us to focus our collective endeavours towards immediate actions that must take place across every part of our public services, and indeed at the heart of our communities, our workplaces and society at large.
Karen Adam and others have listed many such actions that we can take. The status quo simply does not work for people with learning disabilities or neurodivergence. In turn, that means that it is not working for society as a whole, and we are all poorer because of that.
I stand here as a not formally diagnosed but self-declared middle-aged woman with ADHD. It came as quite a shock at first, when it was suggested to me by a specialist a few months ago, but, over the past few months, I have begun to understand myself through that lens better than I have ever done in my 50 years on this earth. However, my journey and my family’s journey to this time and place have been born of five years of immense struggles, tears, school avoidance, trauma and a colossal fight that seemed as if it was being fought on every front. It felt as if we were doing battle with the system and were taking on heavy casualties at every turn.
My husband and I are parents to a wonderfully unique, funny, kind and intelligent young person who is autistic and who has ADHD. When I look back, it amazes me that the world could not see early on what is so blatantly obvious now. That lack of seeing them for who they truly are, which would have enabled supports to be put in place, led us to a very dark place that involved complete school refusal and a retreat from the world at the age of 13. I cannot adequately describe the anxiety, the sleepless nights, the tears, the frustration and the palpable anger and impotence that we felt as parents.
Our child was totally failed by a system that shut them out from being able to participate fully in their own life. They are not alone. My inbox is full of families and adults crying out for support for themselves or their loved ones, whether that is the parents of a learning disabled young person on the cusp of transitioning into adult services who realise that there is little meaningful provision or opportunities on offer; parents who are in the situation that we were in of battling to have their young person’s needs assessed and acted on while trying to keep their own heads above water; or adults who, like me, realise that they are neurodivergent but find that waiting lists for assessment are either closed completely or require a co-occurring severe and enduring mental health condition—potentially giving rise to such a severe mental health condition, substance use or binge eating. I could go on and on.
None of that is in any way acceptable. However, the vast amount of work that had been undertaken on the LDAN bill gave me huge hope that the system could finally be made to change so that people with learning disabilities or neurodivergence or who are autistic—or, indeed, people who have a combination of all those issues—could live their best authentic lives. I was devastated when the bill was not included in the programme for government and when a commissioner role was not to be created.
I agree with Autism Scotland, Aberlour and others that creating a new commissioner would be a key driver for change and would ensure accountability through an independent role, with statutory powers and duties, that would champion the rights of all people with learning disabilities, autism or neurodivergence. It would be their role to challenge Governments, councils and employers and to drive the change that is required for rights to be respected, protected and fulfilled.
Imagine a Scotland where there is no disability employment gap. We have heard about how devastating that gap is. Such a change is not one that can be overseen by a single minister, a single committee, a Parliament, a council chamber or a sector. This is a multisystemic failure that requires a whole-system, whole-community and whole-family approach.
The human cost of the status quo is horrific, but it also has a cost to the public purse. We have a lot of good policies, but the implementation gap persists, along with the clear local accountability gap. That must change. [Applause.]
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