As a parent carer every time you think you’re getting the hang of life, a new challenge smacks you in the face. 

Things get particularly fruity as your child approaches 16, for as a family you are now entering The Transition Zone.

The warnings had been there. L’s consultant had flagged when he was 15 that we needed to think about applying for guardianship. Without it, in the event that he were to find himself in hospital (and knowing that as a non-verbal person he cannot advocate for himself), medical professionals could refuse to consult us on his care. Then a letter arrived from Social Security Scotland similarly highlighting that action was required to continue to receive his disability child benefit post-16. While at school the spectre of transition had first been raised when L was barely halfway through secondary. 

Many young people and their families have a dreadful experience (and worse outcomes) getting from one side to the other. 

You might be aware that there have been various policy and parliamentary inquiries and campaigns around the transition from childhood to adulthood for young people with disabilities. And if you know that, you know it’s not because things are going well. Many young people and their families have a dreadful experience (and worse outcomes) getting from one side to the other. 

I’ll write more about some of the component parts we’ve experienced thus far, including planning for post-school education and guardianship. For now, what strikes me most is that classic public policy problem – the lack of a holistic, joined-up approach. Each process has been designed in its own moment in time, with good intent and input, but not road-tested to interact with other processes that have to be done at the same time.

That Social Security Scotland letter? That resulted in an official from SSS having to visit our house (for which I was told I’d need to set aside 2 hours – albeit it ultimately took 15 mins) to essentially confirm who L is, and that I – as his mum – could be trusted to continue to manage his money. The form preceding the visit asks if you have guardianship in place but as you can’t start the guardianship  process until 16, then you couldn’t possibly have it in place for the young person turning 16. In fact the whole process is redundant once you have guardianship in place, as it trumps the SSS process. So in the space of 6-9 months we’ve gone through two separate processes – with all the wasted resource and stress – to approve money management. I’m sure that’s one inefficiency in the system that we could fix.

As for the rest of it, I dunno. Maybe it helps if more people share their stories. Maybe not. There are so many families who’ve gone before us who’ve long since given up sharing. I’ll settle for getting it off my chest.