Making sure Laura’s voice is heard
Moving from children’s to adult services means young people and their families have to deal with new people, new ways of working and different professionals. Kate explains how she makes sure everyone who meets her daughter has the right information to support her properly.
“Laura has a rare syndrome called Cornelia de Lange; I discovered quite early on there were going to be many different professionals involved in her life,” Kate says.
“Having so many people involved with Laura’s care results in lots of different information to communicate. Each individual who works with her needs to know all the important information we collectively have learned about Laura, who she is, and how she understands the world around her. The challenge for me was: How do I convey all this accumulated knowledge to each person Laura will encounter?”
The answer was a communication passport – a 30-page booklet the family put together detailing every aspect of Laura’s life, likes and dislikes. From diagnosis and medication, through physical and personal care preferences, to how best to talk to her, Laura’s passport lets anyone see at a glance what they need to know in any given situation.
The booklet travels everywhere with Laura, but Kate also has a digital version she emails to support workers and other professionals in advance so they have time to get to grips with Laura’s needs and wishes before they meet her.
“It works across education, medical settings, in fact anywhere someone has to converse with Laura,” Kate says. “It gives her a voice and it’s an excellent two-way tool for everyone involved in her support.”
The communication passport has proved especially valuable at times of change.
“Transition of any situation is difficult for someone with a learning disability, but transition from children’s services to adult provisions is extremely challenging not only for the individual but for the whole family,” says Kate, “I started early, at least 2 years, and I still ran into many challenges.”
Kate’s advice to families planning for transition:
- Plan early.
- Aim high. Think about what an ‘ideal’ scenario for your son/daughter would be. Maybe not all aspects of this vision will be achieved, but at least some will be.
- Don’t give up if you encounter barriers – barriers can be overcome.
- You know your child’s needs better than anyone. Use that wealth of information in getting their needs met.