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“ Charities and care providers are struggling to recruit enough staff to keep services at current levels, let alone expand to meet growing need.

Ten years ago this month, I wrote my most personal and difficult article for Life and Work, and also the one that got the biggest response from readers.

It was a piece about living with my autistic and learning-disabled son, Luke, who was then eight. I described some of the challenges but also talked about the positives: the people who helped, his school, and our amazing church community at Dunfermline: St Ninian’s. I wrote that unknowingly moving near to a church with a mission to the learning disabled was ‘a reminder… that it will never be too much to handle’.

I can’t pretend that there haven’t been times over the past few years when that felt naïve in hindsight. Not because having a disabled child is so onerous in itself, but because from our experience social care systems have been so eviscerated that, far from helping, they actively make life more stressful for disabled people and their families.

The Scottish Government’s website says ‘We recognise and value the 0.5% of the population who live with a learning disability in Scotland and contribute to our communities and to our country’. I wish I could say it felt like that.

Luke is now 18. At the time of writing, he has three weeks left at school and, despite us repeatedly asking for the last two years, we still don’t know what is going to happen to him next. The local college used to run a course that would have been suitable, but that has stopped. The one suitable local daycare facility that has spaces may be closing in a few months, as its building is being sold. If we can’t find somewhere else that can take him, either my wife or I will have to resign ourselves to life as a full-time carer, with all the emotional and financial implications of that.

Social services do their best but are obviously massively overstretched. We weren’t allocated a social worker until we got desperate enough to write to our MP and MSP. Charities and care providers are struggling to recruit enough staff to keep services at current levels, let alone expand to meet growing need.

I’m no expert. I don’t know what is at the root of all this, although I’m sure it’s a complex combination of factors. I do know that we have got to do better. 

Thomas Baldwin Deputy Editor