Human Integrity & Disability Rights
File notes. I’m over them.
How would you feel to have every millimetre of your life documented? When you eat and drink, all your bodily functions including toileting, when you roll over in bed at night, even if you place heat packs on your body. Well I have a special piece of paper where this is all documented for me daily. A total invasion of privacy.
Then in my ‘big folder’ I have my whole day recorded with biennale commentary. Yes, a file note is written as an absolute minimum three times a day, and these document anything from my health happenings to my private daily activities, even conversations I’ve had. Also assumptions are made about my mood, my feelings, my health (without even talking to me). Plus, there is another log that documents my visitors, their names, what time they arrive and what time they leave.
Literally there is not one single part of my life that isn’t recorded.
This is ‘apparently’ life in care.
And why is this all written down? Well, it’s because I’m disabled and unable to live at home, and I’m subject to the assumption that I’m unable to direct my own care. I’m seen as a lesser human being in the eyes of the NDIA and I’m treated as if I have a brain injury. I don’t have the same rights as the average person.
Which really this is the big issue, why don’t I have the same human rights? Ones of privacy and dignity. It’s like there’s always a ‘yeah but’.
‘We have to document this to cover our asses’ they say.
Well, at what cost to me?
Like to use two examples, here are two file notes that I’ve seriously had written about me 1) Mark went to the movies, and 2) Mark is happy. The criteria and guidelines are an absolute joke!
The guidelines should read more like:
Is this file note necessary? Does it invade privacy? Does it respect the client’s dignity as an adult human being? Is it appropriate or documenting a private life? Are you doing it purely to look productive? THIS IS NOT A HOSPITAL
And don’t get me wrong either, I’m okay with medically related file notes, even sharing other important information within them, it’s just the banalities. My private life should be my private life, not written down like a soap opera for public consumption. Something never taken into account when disability related policies are written.
‘Oh list the daily activities’ they say. But what does that even mean?
Nevertheless, what I have is a folder constantly growing with useless bullshit by the day, getting fatter by the hour. And really, documenting all of this, all it’s doing is diluting the efficacy of a file note. For now, if there is something important there for staff to read, it will often be lost within the mountain of nonsense.
This system is broken. It’s gone too far.
And what needs to happen, the people that these file note policies affect, they need to be consulted before any sort of re-write occurs – because a re-write is what is needed. This is a must. New policies need to be created that uphold human rights, and we need not to continue with this discrimination and assumption that I’m a lesser human being who can’t manage his own life.
Because at present this model is not one of person-centred care (individualised care) whatsoever. It’s a messed up regression into an old hospital mindset when this is community living.
Again, how would you feel having your whole life documented in every detail??
I know I feel violated.