As children with CdCS grow up, their needs change. They will move from primary to secondary education, and then from childhood to adulthood.
At this time, often called transition, the rules and allowances change, and the child’s well-being will be handed over to adult services run by the local council.
Keeping a record of all their needs will help with the various transitions.
There are a group of local information services, called Connexions, which can advise on how transition works for each different city/council. You can find your local one via Google.
Inevitably a time will come when the care will change from parents to siblings or other carers due to natural aging, accident or health reasons. You should looking at the available providers and services sooner, rather than later, so that any changeover can be gradually introduced.