Parent of a child with learning disabilities, Kate Sanger, has been on an interesting journey to create a Communications Passport which is changing the way professionals can understand the complex needs of people like her daughter.
Kate spoke to us about her journey creating the passport and her motivations behind it:
“Laura my youngest daughter is 25 and has Cornelia De Lange Syndrome. She has a severe learning disability, complex communication disorder and ongoing medical needs.
In the early days, my main worry was would she walk or talk or live independently. No one ever spoke about behaviour and how she would use hers to communicate her needs. At no point did I or those supporting her understand that every one of her behaviours had a function and if we didn't pick this up she would use challenging or self-injurious behaviour to escape from the situation. I was introduced to the 'Challenging Behaviour Foundation' and when they sent me a package with a DVD and information on understanding behaviours described as challenging it was like someone switching on a light, and instead of saying 'why is she doing this' I now say 'what is she trying to tell me'.
I discovered quite early on that there were going to be lots of 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 have collectively 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 be 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? Having been told about personal passports twelve years ago, my eldest daughter, Jennifer and I thought we could improve on what was out there. We wanted all those involved in Laura's life to look at Laura as an individual, see her for the unique person she is, not just meeting her needs but listening to how she communicates those needs. The Communication Passport we've put together has given her a voice. It is an amazing tool that helps educate all those supporting Laura, and it has definitely improved the relationship with all those involved in her care.
Our Passport was seen by Professor Chris Olivier who is an expert in challenging and self-injurious behaviour in children and adults with intellectual learning disabilities. He asked if we could make a template as he felt so many families would benefit from it. This led to Jennifer working hard alongside myself to see what we could put together.
At present some services use blanket approaches which serve no purpose, the Communication Passport is written in the persons own voice and make the reader look at the person as the unique individual that they are. It gives the client a voice and lets the reader know the best way to support and understand not only the needs of the individual, but the rationale behinds those needs.
Now we have fully editable template, complete with guidance and tips which can be accessed from our website which gives a step by step account of how to make a Passport like ours. We also include Laura's Passport and several others to see how each persons is completely individualised.
Since putting our experiences and resources online we have received lots of great feedback from professionals too: care workers who love the format and the ease of access to important information and specialists who are enthusiastic to see their in-depth reports translated into a small and comprehensive documents that cover the essentials.
John Swinney, Education Minister for Scotland, also arranged for Jennifer and I to give a presentation of our Communication Passport to thirty two key stakeholders which we hope will lead to further development of our Passport.
I look forward to giving a presentation at BILD’s PBS conference on the Communication Passport and explain why we made it, not only for Laura, but all those out there that struggle to make their voice heard.”
Kate Sanger will be speaking at our PBS conference which will be held on 9-11 May in Leeds.
Check out Kate and Jennifer’s Communications Passport at www.mycommpass.com
16 November 2017