Caring for children with disabilities does not stop at 18

Sir, – My son Jack, who has a profound intellectual disability and physical disability, is 18 and he is being faced with transition to a new respite service, from school to adult services, and from a children’s disability network team to an adult disability team, which is not really existent. Hospital transition is the biggest challenge because Jack is under the care of 14 medical teams.

A general paediatrician is instrumental in the healthcare of people with complex medical illness. They act like an umbrella doctor and coordinate all the care and arrange multidisciplinary team meetings between all the teams when necessary. For us, that’s usually every two years. Sometimes annually but it is so hard to organise, as it can takes months to do so. They are invaluable in the healthcare of a child with complex care needs. That doesn’t change as the child becomes an adult, and the truth is that things get harder and more complex. In many cases, their health may deteriorate as some have progressive diseases. The caring is also more difficult as the child is bigger, now an adult, and the parents are also older. Health in carers (mostly parents) decline quicker than in the general population because they don’t get to care for themselves and may not have the time or the means to attend doctor or hospital appointments. They are dealing with huge levels of anxiety and often living on the poverty line.

Who will be the coordinator now for my young adult? Me?

I’m already doing the job of so many others: 18 is not a magic number. The care needs are still the same.