Transitioning to adult services, when a young person with CDKL5 deficiency reaches the age of 16 and beyond, can be a very unsettling process for many families. It encompasses significant changes in the organisation of care for your child, touching on all aspects of life with CDKL5 deficiency – including medical and social care, education, finance and legal rights.
Preparing for transition in respect of education and social care should begin at the time of the Year 9 review (when a young person reaches the age of 13–14). This might sound early, but it is important not to underestimate the time and effort involved. Being prepared with accurate information as early in the process as possible is essential to navigating the challenges of transition. This guide has been put together to help you do just that.
The first part is a roadmap setting out the most important steps in the transition into adult services. It explains the jargon in straightforward terms, provides helpful information and links to further resources. The second part looks at the potential
impact of transition on family life and provides practical advice from parents who have experienced this first hand and from experts in caring for young people with CDKL5 deficiency.