Cornelia De Lange
The Benefits of Communication Passports
Research has shown that many behaviours that challenge are associated with communication difficulties. Interventions for these behaviours often include teaching an individual new communication skills. One way to ensure that everyone who works with a person knows how the person prefers to communicate is to develop a communication passport. Watch the video and read one parent's account below about how having a communication passport has increased the quality of life of her daughter Laura, who has Cornelia de Lange Syndrome.
“Laura is 22 years old; I discovered quite early on that there were going to be many different professionals involved in Laura’s life.
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 about all the important information that we collectively have learned about Laura, who she is, and how she understands the world around her.
As Laura’s mother, through our experiences, I have learned what certain facial expressions mean; and what particular behaviours are likely to have been caused by. Additionally, I am the central point at which all reports regarding Laura’s care coalesce.
The challenge for me was: How do I convey all this accumulated knowledge to each professional Laura will encounter? Someone told me about something called a “Personal Passport” and gave me the address to a website that explained all about it. After checking the website I decided to make one for Laura. It has proved invaluable. She carries it with her at all times in the form of an A5 booklet. I also email a copy to anyone who is concerned with her care.
Here are some of the benefits that we have discovered since using it:
Empowers Laura: the passport is written in Laura’s voice. It allows her needs to be expressed in a way that reminds everyone they are dealing with a young adult who is trying to communicate with them in ways they might not have otherwise recognised.
Others have a clearer understanding of the way Laura would like her life to be. The passport shows how to let Laura be the best and happiest person she can be.
The size and physical nature of the booklet allows for the passport to travel everywhere with Laura: school/day centre/hospital/respite.
Having a digital copy means that it can be easily updated.
The passport has proven to be great tool in educating all those involved in her care. Especially for new staff or during transition.
Crucially, having the passport increases the accountability of those caring for Laura: those who don’t implement what has been written must justify the actions that have been taken.”
For more information on adaptive behaviour skills in Cornelia de Lange syndrome please click here.