Focusing On Connection (Person-Centredness)
Person centred training at Northcott for various service providers, 2011
My name is Georgia Cranko. I am here to give my perspective on how to support someone in a person-centred way. I was nominated to be one of the ambassadors for last year’s statewide Don’t Dis my Ability Campaign. I am also one of Northcott’s person-centred champions. Even though, I don’t really feel like a champion per se, I have managed not to let my disability dictate what I do, or don’t do. Personally, I feel very privileged to be able to be here to share my experience. Yet, would you believe that although I have lived with a physical disability all my life, all 21 years of it, I still find talking about disability a bit unsettling?
Perhaps it is because I am so fortunate to have grown up in an environment, where although I knew I was different, I didn’t feel different. So in a sense, that has become the foundation upon which I live my life. I view disability as a part of being human, having the ability to admit weakness, and having enough humility to ask for, and accept help. I don’t necessarily think of myself as being particularly burdened, or being someone who deserves to be pitied.
My talk today will be about how essential communication has been in the development of my identity.
By way of explaining this, I will also be touching on the importance of choice and the importance of community, which are fundamental elements to living an ordinary life. Support workers sometimes undervalue or just forget these things. Hopefully, my presentation will give you some practical steps to follow in order to incorporate all three concepts - communication, choice, and community. So your new Yiprac service can be as person-centred as possible.
Personally, I find the whole concept of “person-centred approaches” a bit hard to get my head around, let alone to explain it to people. So I’ll try to make it a little clearer. Although being “person centred” is the new buzz word, I find it really basic, and to be honest, simply common sense. Person-centred approaches are designed to put the person in the centre of their life - to give them as much control as possible over decisions in their environment. This is something everyone strives for, regardless of whether you have a disability or not. We all want to have some control, or at least some say in what happens in our life. However, for people with disability, that isn’t always straightforward. The line between personal and public often gets blurred. Piecemeal government funding often determines when an individual should be showered or toileted, and people’s lives run according to other people’s schedules.
What the person-centred approach does, is initiate a power shift. It gives clients the authority to direct the care they receive. Services cater to them as a whole person, not just their disability and services are tailored to suit clients’ individual needs. This means listening to the client, learning their individual personality – getting to know what they like, what makes them laugh, and what they find distasteful. In a way, it’s not only about providing a service, it’s about providing an opportunity for a fulfilling life. It’s about not doing things for people, but doing things with them.
This is where one-page profiles can be incredibly useful. Basically, it is one of a number of person-centred tools, and it lists what an individual values and likes, and how best to support them. These profiles enable staff to offer age-appropriate choices tailored to the individual. In this way the individual can maintain an element of control over their surroundings, and at the same time be respected for who they are. Sue will explain how to compile a one-page profile later.
As I say, I am probably not the best to describe the impact of person-centredness on the disability sector, because I only started accessing disability services regularly over the past year. Throughout my life, I have been lucky to have people around me, who listened, respected, and valued my judgements and opinions.
My parents never talked down to me. They patiently played an extended version of “20 questions” until I managed to get my point across. At the time, it was incredibly frustrating. As the years have passed, I’ve come to realise how lucky I am to have been born to loving parents. They have nurtured and listened to me, and as a result it was a terrible shock to realise how often this is not the case - particularly amongst people who have disabilities.
This is a snippet of a home movie filmed when I was three, I am trying to express what I want and it shows how my parents have always encouraged me to have a voice.
So as you can see, although communication is by no means an easy feat, I was always listened to. Even if it took hours, (as you heard my mum wearily say). They took the time to make me feel that my desires and thoughts were valued enough to spend ten minutes searching for that one symbol, or to play a torturous game of charades to express myself.
I also have extraordinary friends, who just naturally do the things I cannot. They see me as an ‘average’ person, and they can’t see any reason why I shouldn’t do and experience ordinary things. But in order to do ordinary things, they understand that I need a bit of extra help.
Despite this, during my everyday life, I face situations where people regard my disability as a barrier: I am ignored and made to feel invisible. Often, when meeting people for the first time (and occasionally for the second or third time), they talk to me like I don’t understand, and most of the time they don’t even talk directly to me. It makes me feel like less of a person and upsets me, because most people treat their pets with more respect and common courtesy than they normally do people with disability. Luckily these encounters don’t happen all that often, predominately because I can speak up and correct people’s misguided assumptions. But what happens to those of us who can’t be clearly understood? What happens to those people who cannot ask for the best quality care for themselves? People get dismissed, people are not consulted on their wants and needs, people are left to their own devices, and become disinterested and unhappy.
Everyone can make decisions, regardless of cognitive ability. We all have things we like, and things we don’t like. Even when communication is difficult or stressful, it is worth it, it’s so worth it. It is worth taking the extra time to listen and hear about people’s individual choices.
The three essential and practical steps to support someone’s communication are:
1. Take time. Be patient.
2. Be interested.
3. Don’t let external factors get in the way.
Now, I am going to expand on each of these practical steps.
Taking time to communicate is vital. When anyone comes into my life, there’s a period of uncertainty and of hesitation. People often don’t feel comfortable talking with me initially, but I always say it takes time, and it certainly does. If the person is willing and patient, it really assists me to relax. It facilitates effective communication, because sometimes the sheer anxiety of not understanding impedes the actual process of communicating. I like people to trust my ability to make myself understood and I like people to give me time.
As you can imagine, without a method of communication, I couldn’t effectively conduct my life or get through the simplest tasks. Communicating is really just conveying a message to others, so whether it is speech, sign language, gesture, facial expression or even eye gaze, it all achieves the same outcome – it gives insight into who the person is and what they have to contribute. So, you have to be patient and perceptive, look for opportunities that you have time to chat with a person, like when you are feeding or toileting them.
Communication charts can assist you in relating to the person. As you can see, they display common situations, what an individual does, and what that behavior means.
When I say you have to be interested, I mean not only in how to help your clients, I mean being interested in your clients as people. By doing this you will have a tendency to want to know their preferences, their opinions and what they enjoy doing. This will automatically assist in developing a working relationship.
Seymour B. Sarason, a social psychologist, once stated that community is, in part, a readily available supportive network that an individual can rely on to get their needs met, as well as to be supported and valued. I feel this sums up what all disability services should aspire to be. A place of support and care, and a place where everyone can feel included, accepted, and heard. This means treating everyone with a sense of dignity and respect, and taking on the role of supporters instead of carers. Although, it’s only a slight paradigm shift, I feel that people need to be supported in doing the things that they enjoy. They need to be given choices, and opportunities to experience new and different things, above and beyond their basic physical needs.
It is also about prioritising time to converse with your clients and not letting other things get in the way. When you are rushing around, it’s easy to think you know what’s best and just do things for a client. In some cases, that’s okay. However, it’s important to differentiate between assuming and being proactive. While these two things can easily be confused and misinterpreted, the key difference is being informed about the preferences of an individual. Personally, I feel very uncomfortable, if say, a person I don’t know wipes my chin without asking. But if a friend sees I’m concentrating intently on something and therefore dribbling, I don’t mind if they lean over to wipe my chin.
So in essence, the simple solution is to ask, discuss and give choices surrounding what you are doing with the person involved. Tap someone on the shoulder if you are moving them somewhere else. It’s all part of forming a relationship and a connection. And after all, relationship and connection is the very substance of life.