We need to do so much better than this.
We need to do better. I am writing this as an observation that in Australia we are failing people with disabilities on so many levels and this is not great at all to see and observe. I saw on the news stream that we on a federal level have a surplus and I understand that this is a good thing but we need to be aware that people need to do better for people with disabilities.
Those of us in the disability
community are waiting for the final reports from the disability royal commission
and we are still counting the cost the cost is just fiscal it’s the harm that
has been caused in people's lives and not only that how many people through the
impact’s of not having the care they need or the encouragement they need to be
better or to achieve what they are capable of, as we need to be aware that
people with a disability as we have seen are at greater risk of harm from the very
people supposed to protect them.
We are seeing that many disability service providers don’t pass
the burrito test this is a simple litmus test to see if it is a home,
residential service, or institution, It is simply a test to see if a person is
hungry in the night can they get up and microwave a burrito if they are getting
into trouble or questioned or simply prevented from this happening well it’s an
institution.
I can understand some things are common sense but we need to
be very aware of what this segregation does to the lives of people with disabilities
as for too long we have had providers dictating to us what we can and can’t do,
I can understand that some people who don’t have the cognitive ability to
understand the risks would need to have a different outcome to other people who
are higher functioning and can understand the risks but to have every inch of
our lives managed is not great for our mental health. Especially when staff are criticising what you
are doing getting mad at you for not being able to do things and not even doing
the basics like reading your file when they need to understand where you are
coming from and even favouring other clients and making you feel like you are a
less deserving person.
I am writing this as a weird combination of penance, therapy,
and venting as I am on good days able to do most things by myself but there are
something’s that I have had to experience and when I have spoken up to people
about it I have had a couple of responses that I didn’t expect.
One was from family telling me I am entitled and they would
love to have the care I have, ( but I don’t think anyone deserves to have it
served with a side of moral judgment and invasive questions about your personal
life to the point I outed myself this is dangerous on so many levels)
I got told that I was “ lucky” to still be in the service
and the house for blowing up at an objectively lazy support worker, who was
related to management so felt she didn’t need to do the work because she was
tired and we got into trouble by the real estate, for not having the house hygienic.
Thankfully I was given a fair hearing
and I was moved houses but in the same block of flats. But I blew up at this
worker as she would actively ignore me and favour another client who has severe
jealousy issues and she was pandered to because she would be difficult to
manage to the point that I felt I had no option other than to push myself and
to make myself sicker than I already am as well.
This has been resolved but this worker if she hasn’t been related
to the boss I feel that she would have
been fired by now I am still confused as to how it was allowed to get to the
stage where she was actively lying about what she was doing on shift and I feel
like I need to take a calculated risk and talk about it.
I also understand that there are much better workers out
there but organizations get so top-heavy they stop listening to the workers
that are on the ground and they then stop speaking up about it. I was constantly on high alert about what I
was unexpectedly going to get into trouble for next or get thrown under the bus
about next. So let's start listening to the people on the ground about this as
we need to do better to undo the trauma that disability can create. We need to not be creating the trauma in the
first place and this goes for both direct support workers and clients as we need
to move on from platitudes to real and honest solutions.
My suggestions are much better mandatory training.
Proper onboarding including client engagement and rules
around ethics in support.
Allowing friends who have provided informal support to become
paid caregivers
Having continuous education around disability is not a
suggestion but mandatory.
Having safe working practices and having a safe home for
both clients and support workers.
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