Pete Richardson is a parent of an adult daughter with a complex and profound learning disability (caused by a very rare gene mutation) “I have a daughter with a KCNQ2 potassium channel deletion, which effectively means that the synapses in the brain that fire the electrical signals across don't work for her. She has a profound learning disability because of this.” Pathogenic variants in the KCNQ2 and KCNQ3 genes are associated with a spectrum of genetic neurological disorders that include debilitating impaired neurodevelopment, characterised by developmental delays and intellectual disability and complex epilepsy.

Worryingly it is not just days out which have become increasingly expensive and hard to manage, the basic costs needed for her to remain well looked after within her own home have also increased. In addition to the more obvious issues, such as the huge increase in the cost of heating, it is the things that make her happy, that bring her joy and make her life meaningful that have become almost impossible to budget for. “While she doesn't need specialist equipment one of the things she's obsessed with is water play. We had bought her a hot tub to be based at the residential home, but now she has to pay something crazy like an additional £100 a month in electricity costs just to keep that going. Now, whilst for a family with neurotypical kids you'd say ‘well, that's a bit of a luxury’ for Rosanna it's essential. It's part of her routine. She likes to splash about, and she can splash about outdoors in a hot tub without flooding a bathroom.”

The impact that possible loss of this much-loved activity and indeed outlet weighs heavily on Pete as her Dad, because her options and the opportunities that are available to her are already so limited. “With somebody like Rosanna, who has very limited ability, she can't just join a theatre group for example, and so splashing around her hot tub is something for her to do, something enjoyable and safe.”

However, Pete feels fortunate that for now at least, some of the activities and groups that his daughter can access are still affordable as they are paid for through a continuing health grant. “That said, what we have noticed is there's just fewer of them. For example the group she goes to on Wednesday is struggling to find a venue that’s still affordable without passing the cost on to the clients.” It is hard, for families like Pete’s, to watch as their grown children struggle to understand and adjust to changes to their much loved routines, and to the very real impact that the cost of living crisis is having on their daily lives.