As the parents/carers/guardians of a disabled or medically fragile child we need to consider some key points when embarking on the transition from Children’s and Young Persons’ Services to Adult Services.
As some of you know, I have a profoundly disabled daughter and many of you have come to know her and witnessed many of her accomplishments and milestones. From first-hand experience with Elke, I would suggest that there are 5 main areas to focus on.
When Elke turned 5 and began school, several professionals made comments about how they "couldn't wait to see what would happen" when she eventually transitioned to Adult Services. While I must apologise that I haven't been able to solve this challenge for everyone, I am working to create resources that will help families feel better informed about what to expect, when to begin the process, and provide them with a roadmap and sense of control over what can feel like an overwhelming journey.
The transition process typically begins during your child's 14th year at school, initiated collaboratively by your child's education provider, their social worker (if applicable), and you as parents or carers. The goal is to work together to build upon your child's Education and Health Care Plan (EHCP), supporting them in becoming an independent Young Person while also helping you develop independence from your caregiving role. I realise this may sound counterintuitive, but your child's journey toward independence naturally involves both of you learning to navigate this new dynamic together.
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