Transitioning through to adult services when a young person with Dravet syndrome reaches the ages of 16–18 can be a very unsettling process for many families, as it brings significant medical, financial and legal changes in the organisation of care for your child. All these changes can make transitioning into adult services feel very uneasy and uncomfortable. There is currently limited help and guidance available to support families during this period – and it is not always easy to access and find. Being prepared, and arming yourself with as much information as possible, will help you to navigate through this challenging time.
You can apply to become someone’s deputy if they ‘lack mental capacity’. As a deputy, you’ll be authorised by the Court of Protection to make decisions on their behalf, including decisions about their personal welfare, e.g. medical treatment, how they are looked after, what schools and educational centres they attend, etc.
If deputyship is not obtained, legal responsibility for the young person with Dravet syndrome will revert to the local authority when they legally transition into adulthood at the age of 18. This does not mean that, as a parent/guardian, you will no longer be expected to care for your child. BUT it does mean that you will no longer have sole responsibility for decisions regarding their personal welfare.
Transition also ushers in significant changes to the medical care of the young person with Dravet syndrome. For example, after having years of working with the same medical team you they will move onto a new, adult-services team, who perhaps have less knowledge of Dravet syndrome than the paediatric team you were used to working with. Hospital appointments or A&E visits can become more challenging as they will be based in an adult hospital or unit that may not have the facilities that are appropriate to your young adult’s developmental stage. Hospital stays also become problematic as there is nowhere for a parent or carer to stay overnight on an adult ward.
The following two case studies provide insights and advice based on two very different and equally challenging experiences of coping with transition.