Jono
I want to share why I think it is important to be in control of your own supports. After nine years of experience, finding and choosing my own support workers for community access, I rarely pick someone who is unsuitable for me.
I really think that when you are working closely with someone daily personalities matter, and you need to be compatible with each other. It is hard enough to find that balance when there is just one person involved, and nearly impossible when you have a group of people living in the same complex who all have different personalities. Even though living in the big smoke had always been a dream of mine, it wasn't the reason I looked at moving out of my current place. I was over not having the choice and control over who supports me on a daily basis.
Let us talk about personal care. When I moved into my own place, I had experienced for the first time what it was like to have a support worker, a stranger provide personal care for me. In 26 years, only seven people were trusted with this deeply personal support. Only my mum and other close family members. I had at least seven new people assist with showers, toileting, and dressing me in just the first two weeks of living in my new place.
Now, four years later, approximately 40 people have seen me naked and washed my intimate parts. Imagine having to constantly ask complete strangers to take you to the toilet. Having choice and control is a fundamental right of every person. If I'm not happy with a support worker or a service provider, I should have the right to take my NDIS funding to a different provider who I think might have support workers that are more suited to my needs.
Everyone lives differently. However, when you are supporting someone, you should always ask how they would like things done and try your hardest to respect their wishes. I am becoming a [inaudible 00:02:20] in my home. Everything has a place and most people do not respect that. I can keep my computer files tidy myself. However, now one of my personal support workers must re-organise cupboards at the start of each shift, as this I cannot do. And the complex support workers then try to put stuff away in the right place.
I thought I had heard every excuse in the book until recently when I was left dumbfounded. I had washing that needed to be taken off the line as it was starting to drizzle outside. So, I called the support worker on duty at my complex and asked them to come assist me with this at my unit.
When they arrived, they told me that they did not want to bring my washing in for me as they did not want to get wet. I would completely understand if it were raining heavily, but it was an obvious case of laziness. After they left, I sat in silence for 15 minutes. And one hour later, a different support worker brought my washing in for me. They said to me that if it were brought in earlier when I had asked, it would have been dry.
I have been put in danger on so many occasions. Support workers have told their service providers that they are experienced with using a host. But they have come to assist me, they clearly do not know how to use it. Worse than that, is the fact that many will not follow my instructions properly. Frustrating, as I think I know a thing or two about hosting if Monash University trusts me to help train their occupational therapy students on how to operate a host.
Cleaning is another issue. For instance, many say that my floor is clean enough. But to me, things are either clean or they are not. I find that support workers cutting corners with most cleaning duties is unfortunately very common. I do not experience these issues with the support workers that I choose. They know that they must try to work with me to the best of their ability and that I ultimately have the choice in keeping them or letting them go.
I find it much better when support workers and I are on the same page with my expectations. I still require 24 hour on call support for unplanned support. And I am happy to not having the ultimate control over who are those workers because it is shared support. However, those workers shouldn't be doing my daily support. I should be able to choose who assists me with my daily activities like morning routine, lunch, dinner, and bedtime.
I am sure when I move to the city and am able to choose who support me on a daily basis, there will be less incidents. And I probably won't have 40 different workers in four years, which means I will feel safe and have more time to do what I want to do because I won't have to double check everything is done properly.