CHARGERS

Person-centred journey, by Ellen Howe, June 2013

Hey, I am a 27-year old CHARGE adult turning 28 (in 2013). I attend community participation at Northcott Disability Services and would like to talk about my person-centred journey.

In 2010, Northcott took on a project which allowed clients and staff to become person-centred champions. What is a champion? – you might ask. As a champion we help clients and staff and other people who use Northcott and other services have a stronger voice, a better choice and more control.

I undertook the champions training in February and March 2013 along with 8 other people from Roselands (NSW) and Casula (NSW). In the training we learnt about various tools and different ways to help us and others. One of the tools we use is the assertiveness tool so we can say, “when you do this…, I feel like this… because…” and it is really helpful in getting our point across.

We also did ‘what’s not working, what’s working’. What this does is helps us to focus on the positives. We often focus on the negatives but when we think of ‘what is working’ we will find that a lot is actually working; we just don’t think of it. With the ‘what’s not working’ we can turn it into a positive and improve. There are many different tools we can use and all of them can be used everywhere.

How can this benefit people with CHARGE syndrome? Well to start with – think about when a CHARGE baby is born and you find out its CHARGE. You have doctors everywhere saying, “no no no no”. Well you can say, “She wants to do this”, or “I’d like you to try”, because we all have a right to all the things that there is to offer. By allowing the kids to guide you [and your decisions], you are giving them control.

You can even try it with therapy. Here is an example I read in the US Facebook group; well actually a kind I’ve read often in all our groups. A therapist gives you a selection of toys. You pick the one you want and the therapist gives you another toy instead. This is a great example of someone not having their own choice, voice and control.

Even if they can’t communicate, it is very important that we help them to understand at a young age that they can do this. We all know CHARGE kiddos and adults have their own timeframe and way of doing things. We have all heard Tim Hartshorne, David Brown and George Williams at all the conferences talk about “in their” time. So what you are doing when you allow them to choose their own toy or their own way of communication in “their” time is giving them control and a voice. When they get older and get to my age they will then be able to inform others.

Being a person-centred champion at Roselands has allowed me to do so much. Just the other week I made my first medical appointment without my mum’s help. I now have the confidence to speak up to people and tell them what I want.