Psycho-Social Disability is Different…
As a young person, I lived in a house with people who have sensory disabilities. In my work life, I have worked with people who experience physical disabilities, intellectual disabilities and psycho-social disabilities. I can safely say that psycho-social disability is different to all the other types of disability. The difference is important, especially if people experiencing psycho-social disability (‘PSD’) are to get the most out of something like the NDIS.
To understand how PSD is different, it helps to spend some time thinking about the term ‘disabled.’ It means that there are things that a person is unable to do. A blind person is disabled from seeing. A deaf person is disabled from hearing. An amputee may be disabled from walking, etc.
So, what is a person with a PSD disabled from? Well, let’s take the word ‘psycho-social’ apart. The first part simply refers to the fact that this disability has something to do with peoples’ minds. No confusion there, as PSD typically springs from what an experience of ‘mental illness.’ To understand how a person is disabled – and therefore to understand how they might overcome that disability – the key part of the term is really the word ‘social.’ A person with psycho-social disability finds some part of being with other people challenging. It is this challenge that disables people.
In my observation, one of the key social challenges is that a person with PSD often thinks of themselves as very different to other people – and not usually in a good way. The experience of mental ill-health is an ‘inner’ one. If a person has a hurt leg, other people can often see the injury, maybe with the help of an Xray or similar. But if a person has an injury to the way they think, other people cannot see it. So, the illness that leads to the PSD is a ‘hidden’ one.
What’s more, the injury leads to inner experiences that most people find very hard to describe to others. It is hard for most people who experience PSD to explain their experiences to other people. This can leave people experiencing PSD feeling alone and believing that they are very different to others. This can make it hard to simply be with other people. It can also make it very hard to ask other people for things that they need. This can be especially the case if the person has had some bad experiences due to their PSD – for example, if they have needed to live on a pension or similar, which makes for a pretty limited ability to spend and buy things they need.
This is obviously a real challenge for people experiencing PSD. It also creates a unique set of challenges for people working within the NDIS to help people experiencing PSD. A while ago I watched an inexperienced support worker sitting with a man in his 40s who experiences PSD. It was the first time they had met, and they were negotiating how often the support worker would come. Somehow they had arrived at one visit a month. The worker did not want to appear ‘pushy’ and so was reluctant to suggest he come more often. The participant was not used to asking for things and so was reluctant to ask that the worker come more often. As a coordinator watching on, I could see that neither of them thought that once a month was a good idea. Happily, I was there and was able to gently suggest more frequent visits (they ended up with once a week!)
But this is really the point: very often, a person with PSD has become used to being on their own (or at least feeling like they are). They find it hard to ask for “more” – even when they have received a very thoughtful and ‘generous’ NDIS plan. One key for those of us working with people experiencing PSD is therefore to take a quiet and patient approach that lets people feel safe with us. The major mistake that people make when trying to help people who experience PSD is to ‘come on too strong.’
In support coordination, this can be easy to do, especially is a person has a comprehensive plan and there seems to be a lot to arrange. But plans go for at least 12 months, and so it makes sense to prioritise those things that really need to be done immediately and then spend time getting to know the participant. This will ensure that the things that are done are done sensitively.
Sensitivity is the real key. Most people who experience PSD talk of feeling especially sensitive to other people. That is why we called our service Calm Consulting. It is a reminder to us as much as anyone to remain calm and take our time. That leads to better outcomes in the end.