Until the age of 18, the long-term health care of your child is the responsibility of child health and social care services. From 18 onwards, adult services usually take over.
Between the ages of 16 and 18, there is a period of transition during which your child will start to have contact with the adult services relating to:
Planning for this transition should really begin whenever it starts to become clear what your child’s needs are likely to be from aged 18 onwards. The timing may be different for each person, but it typically starts at age 13 or 14 (year 9 in school).
Transition planning should be an ongoing process rather than a single event and should be tailored to suit your child’s needs. The first step should be a ‘transition assessment’ carried out by your local authority to see what help your child is likely to need and benefit from.
You can read more information about transition planning and assessments on the nhs.uk website and Contact a Family’s website.
You can also talk to our specialist adviser on Juvenile Huntington’s, Helen. She can help answer any questions you have. You can reach her on firstname.lastname@example.org or 01279 507656.